tag:blogger.com,1999:blog-59232962480069412292024-02-20T05:39:35.599-05:00Move along, nothing to see hereDay to day life, coping with single-handedly running a small business while being sole care-giver for a disabled and borderline dementia spouse.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-5923296248006941229.post-77374511520571463062011-10-08T15:14:00.000-04:002011-10-08T15:14:39.103-04:00What a long strange trip it's been<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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</style> <![endif]--> <div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">So.</span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Spent a solid week frantically cleaning so I would have at least a civilized space to greet the incoming horde of friends and family.<span style="mso-spacerun: yes;"> </span>They had all made their own housing arrangements, except for one aunt who took S up on her offer, so I didn't have to worry about them. </span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">In that week I went into a minor meltdown - so scared I would 'lose it' when they all started offering sympathy. But ultimately it went better than I possibly could have hoped. Some of it was a bit of a blur, as I failed to take the detailed notes I had during those final days at the hospital, but that's OK.</span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">The next day we all had breakfast together, then lunch, then my brother turned up at his motel so I allowed myself to be dropped off and spent the rest of the day with him. We all had dinner together, then 'home' to dress. </span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">The memorial was highly irregular, but went very well, with just about everybody contributing some story and lots more laughter than tears, just as I had hoped. The digital frame I ordered worked perfectly,<span style="mso-spacerun: yes;"> </span>showing a good selection of the pictures I had chosen. There were also about 6 or 7 framed prints scattered about, but I kept it simple. When it ended the funeral director commented that, based on the stories he'd just heard he wished he could have gotten to know him too.</span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Since my car had gone into the shop the Saturday before the Wednesday memorial I got rides everywhere with family or friends, but toward the end mostly with my brother.</span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Oh it was so good to catch up with him! It didn't take long at all for us to fall into something close to the old comfortable relationship, even after so long apart. He stayed on almost a week, only leaving when, he did because he had to set his business on track, as he had to prepare for jury duty. We made the most of<span style="mso-spacerun: yes;"> </span>the time we had - talking, going to a movie, eating out,<span style="mso-spacerun: yes;"> </span>spotting stars at the Woodstock film festival, eating in, going to the drumming circle in Woodstock. Finally, on his last full day, Monday we did the zip-line tour at Hunter Mountain, along with my best friend.<span style="mso-spacerun: yes;"> </span>Great fun, and my only regret was that hubby wasn't there in person, as he had wanted to do it, but he was there in my mind and heart.</span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">After he left on Tuesday morning I firmly set myself to following my 'new life resolutions' starting with delivering an overdue bill to the plumber in person - walking the mile each way -<span style="mso-spacerun: yes;"> </span>thus both getting past procrastinating on important stuff and starting my new exercise regimen. </span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Then I read a beautiful letter from another recently bereaved lady and cried -<span style="mso-spacerun: yes;"> </span>and it eased the nagging lower back pain I'd been dealing with for weeks. Apparently I'd been holding everything in so hard I nearly crippled myself!</span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">Been doing a bit too much drinking in the evening to help me get to sleep, which backfires when it wakes me up at 3AM. So Thursday night/Friday morning I decided to put in a DVD since I couldn't sleep anyway, and my brother had performed the miracle of hooking it up so it actually works. Part way into the movie I suddenly remembered how it - The Voyage of the Dawn Treader - ends, but I couldn't stop it,<span style="mso-spacerun: yes;"> </span>and after that it was like a slow motion train wreck.<span style="mso-spacerun: yes;"> </span></span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">I cried. I wailed. I howled. I nearly suffocated because my nasal passages got so inflamed from the force of my grief I couldn't breathe through my nose.<span style="mso-spacerun: yes;"> </span>It went on for what seemed an eternity, but was probably about 15 minutes. The longest and hardest I've ever cried in my life. It was savage, totally uncivilized, scary, and probably not for the last time. I still feel twinges in my chest. When the storm finally passed I turned off the alarm clocks, put on my sleep mask and went to sleep. Didn't wake up until 11:30AM and felt positively hung over - and not from the cocktails - just the force of that storm of grief.</span></div><div class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";">So I have started cleaning house, giving away a lot of his cold weather clothes to T, as most of his old clothes are positively ragged, and some to S just so she has something for the cold weather that is coming. He would approve - stuff is only of use if it is of use, not kept as a memorial. Whatever I don't get rd of now will wait until Spring when his summer wardrobe can be distributed to thrift stores or what-have-you. Bit by bit I'm getting rid of unnecessary stuff and organizing what is going to be kept.</span></div><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">I know it will not be easy sometimes, but several years of planning for this - widowhood - has prepared me as well as can be expected. 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<div class="MsoNormal"></div><div class="MsoNormal">transcribed without editing from notes taken at the time</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Monday Sept 12 - his belly and legs are grossly swollen, and the doctors say they are putting him on a stronger diuretic. He is fairly alert, if not entirely lucid, but also in pain. Skinn stretched that far almost overnight is exceeding sensitive.</div><div class="MsoNormal">Wednesday Sept 14 - Got the bad prognosis - maybe a week to go before the shutdown kills him. Stayed the night, all day Thurs. As of 11 his meds finally kicked in - drowsy and incomprehensible. Dozes if I speak more than a couple words. </div><div class="MsoNormal">Called D - almost both lost it. Called T & S - held it together. J then K called me - he wants to fly out to help and be supportive. I asked him to hold off - I will probably need him after, but for now I just want to spend my available time with (my husband). </div><div class="MsoNormal">11:15 - asked for and received a dose of morphine - the gastric tube is unplugged so they can x-ray to confirm it is in the correct position. Once that is done it can be hooked up and start reducing the gut pressure again. One thing, sadly, has not changed - when he gets pissy he can put an intonation on the simple phrase 'oh please!' that turns the words into a curse. He may still be mostly lucid, but I sense the toxins are doing their work in his brain and I don't know how much longer the essential 'he' will be here. </div><div class="MsoNormal">11:25 and the doctors still haven't stopped in so I have not been able to ask questions. As always, it's a waiting game.</div><div class="MsoNormal">In an odd side note, last night on the trip back to the VA I left the CD/radio off - I didn't want a 'sound track' attached to my later memory of these events. Likewise, although I brought two books with me I have not read from them either, opting to write instead so as not to taint my memory of the books with these events, or the events with an emotional overlay from the books. So I talk to him when he is capable, I watch the 'Care TV' - all beautiful nature scenery with serene 'ambient' - as in mostly unrecognizable but peaceful music. Very restful and soothing, as it is designed to be - kudos to C.A.R.E. (healing healthcare systems).</div><div class="MsoNormal">11:55 just had the x-ray so soon the tube should be getting reattached to the suction, which will relieve the pain and pressure and maybe make him less grouchy. The morphine should have kicked in long since but with the pressure he is still seriously uncomfortable. The one downside to watching the video channel is that considering why we are here watching it, the cross reference to the end scenes in Soylent Green is, to put it mildly, unnerving. I think that might explain in part the weird dreams I had in those brief sleeps I actually had last night.</div><div class="MsoNormal">About 3 PM, with approval of the doctors, I set off and returned with an ice cream soda float, a ginger ale and ice tea! He enjoyed the strawberry and vanilla very much, but it was weird watching it come right back out via the stomach suction tube. He was able to savor the taste and texture, but since his gut has shut down all they can do is pump everything out so his gut doesn't over fill.</div><div class="MsoNormal">6:15 I had thought losing him would be the hardest part. Watching him descend into constant pain while his mind still works is proving much harder. He still knows me, though sometimes he's not sure just how bad his situation is - still thinks he's coming home. That hurts, but until his mind starts really going I am being honest with him, as he asked. When he asked why this was happening to him I choked - half laugh, half sob. I asked him if he seriously wanted an answer to that. He looked me right in the eye and said yes. So I reminded him of the years of smoking that led to the emphysema, the years of heavy drinking that had destroyed his liver and very nearly destroyed our marriage. He thought about it, agreed, and apologized. I know he knew all this, but to have it laid out plain like that made it simple and real and he was able to accept responsibility for his actions and on the outcome for the first time in his life.</div><div class="MsoNormal">However, as his body shuts down, the uneven process is causing him increasing pain. He's had morphine three times today, and has a patch of Fentanyl <sp?> that will kick in tomorrow, but is still in such pain they also gave him an IV shot of fast acting Fentanyl to tide him over.<span style="mso-spacerun: yes;"> </span>He is getting both a rectal tube, to ease the gas in his gut, and a catheter to drain his bladder - between them he will suffer less distress and the staff will have to deal with less mess. Though his peristalsis has pretty much stopped, some loose stool still seems to make its way out irregularly - the rectal tube will take care of that as well as venting excess gut gas. </div><div class="MsoNormal">I was sent to the day room while these were installed and I didn't argue; I've been there for several of his prior catheterizations and they are never pretty, and I don't imagine having the rectal tube will be any more 'fun'. I already see him in unavoidable pain - I'll pass on seeing the added discomfort caused by attempts to free him of some of it.</div><div class="MsoNormal">6:50 Fetched back - all done, and between the pain killers and the new pipes he seems to actually be 'resting comfortably'. It's hard to see him with three different tubes running out of him, but since none constitute anything but p<em><span style="font-family: "Calibri","sans-serif"; font-style: normal; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-font-style: italic; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-latin;">alliative</span></em><i style="mso-bidi-font-style: normal;"> </i>measures both of us are OK with them - they all are simply venting toxins, not feeding him or breathing for him. They simply keep him from hurting too intolerably as his body dies. <span style="mso-spacerun: yes;"> </span>He is still complaining of pain but there isn't much more to be done. </div><div class="MsoNormal">The sun, behind a veil of rain clouds all day, just made an eye-stabbingly sudden appearance on the horizon at exactly the level to blind me with gold in our west-facing 6th floor room, strangely cheerful ending to an otherwise grim day - not sure how I feel about it. Maybe simply coincidence, maybe a sign of better things to come, maybe a reminder that the troubles of two little people etc etc.</div><div class="MsoNormal">7:10 The glorious gold has turned into shades of pink and purple clouds, though the clear sky of the western horizon remains a delicate dusty gold. The pink bears an unsettling resemblance to the remains of the strawberry soda shake still slowly working through the gastric tube.</div><div class="MsoNormal">Made a bunch of phone calls while on my hour long 'dinner break', which entailed another walking trip, as it seems the VA cafe only does breakfast and lunch. Had I but known that I would have bought something like a sandwich and salad and let it sit until I was hungry. As it is I had a 15 minute walk for over- priced but decent chili. </div><div class="MsoNormal">Sky is now again pale gold with slate blue/grey clouds - a good color combo for business clothes and evening skies.<span style="mso-spacerun: yes;"> </span>A couple of calls didn't go through as planned for differing reasons, but I'll catch up with them tomorrow. He has grumbled a couple times and even spoken angrily at someone I could not see, but mostly seems well sedated. I have no real hope this peace will last all night, and will probably have another oft disturbed night, but what is one more after so many, when soon he will only disturb<span style="mso-spacerun: yes;"> </span>my sleep in dreams?</div><div class="MsoNormal">8PM Finally quiet after 10 minutes of madness. He woke abruptly, once again complaining of pain in his feet and legs. I tried to gently rub lotion on them but the skin is too distended and tender. Suddenly, in a move that I thought was just scratching his nose again, as he has off and on all day, he grabbed the tape on his nose and ripped out the gastric tube. Again. He then proceeded to make moves to rip out the Foley but finally calmed down and, after muttering unrelated things for a while, fell back to sleep. The tube can be left out for a while - it needs cooperation for easy insertion, so they hope to persuade him to allow it's reinstallation later. </div><div class="MsoNormal">However, in his ranting I detected the onset of encephalopathy, and this time there will be no bouncing back. I am watching the man I know gradually dissipating like HAL in 2001. To keep him from ripping out other tubes they took my suggestion of the 'mittens' rather than restraints. He still has most of his freedom of movement, but the 'boxing mitts' keep him from using his hands effectively. The nurse made the mistake of putting the right on first, and when she turned to get the one for the left he had already taken the first off. She hadn't reckoned on him being a lefty. So she installed the left one, with no resistance oddly, then put the right back on. He was smiling faintly, as if at a joke only he knew, and muttering obscurely as she tucked him in, after which he dozed off. I was crying a little, because every moment that passes takes the man I married further out of reach, forever this time.</div><div class="MsoNormal">8:40 More tears - I had to request fresh bedding - someone had 'cleaned' the room and mine from last night was gone. The nurse or aide (not sure) who responded is one we've dealt with many times over the past few years. She remembered him well, both the good and bad, and was so sympathetic when she realized how close to the end he is I was undone.</div><div class="MsoNormal">Mow, in a freshly remade bed, with an unknown quantity/quality of night ahead I'm not sure whether to stay awake and be ready when he starts waking up and acting up or take a chance and go to sleep early in hope of getting a little more shuteye than I got last night. <span style="mso-spacerun: yes;"> </span>The TV options are dismal and I still don't really want to read either of the books I brought with me. The one is too bizarre, the other too vital to my continuing growth. Each serves its purpose but neither was a good choice for here and now. I could walk down to the day room and snag something but am not sure I am up to the task of running both the gauntlet of eyes and choosing from the mess of a collection of reading material I glimpsed.</div><div class="MsoNormal">Before he began his slide into nothingness in earnest two things happened worth noting. He mentioned a lot of people he wanted to find and apologize to. I grabbed a pad and pen and offered to make a list and track them down to do it on his behalf, but he just muttered<span style="mso-spacerun: yes;"> </span>about 'too many' and drifted off to sleep. When I realized I was starting to lose him I asked him if he could hear me, and when I was (pretty) sure he was listening I told him I forgave him for everything he might have ever done to me. I wanted him to carry a sense of my love into the void, not the 'I know I've been an asshole' guilt he'd been randomly spouting all day. I don't know if I got through, or if I did if it was in time to stick, but I had to try. He had been making an effort to finally take responsibility for all his acts of foolishness, stupidity, selfishness and, yes, pure assholery, so it seemed only right to absolve him as best I could. Neither of us is religious, but this is a concept we both understand, if not follow 'religiously'. </div><div class="MsoNormal">I'm going to try again to get through to him if there is any sign of 'him' still at home tonight or tomorrow. It seems important for both of us to have closure on the bad times and focus on the good. Like when he was waiting impatiently for his pain meds to kick in - I got him thinking about the time we went parasailing in the Keys. I hoped the memory of thrill, and soaring weightlessness and glee would simulate and stimulate him to feel the euphoria and then the meds. I think it did help - I know he enjoyed revisiting the memory, even if I could barely make out some of the comments he made - the smile said it all.</div><div class="MsoNormal">9:15 just looked over - he has somehow wriggled out of at least one of the 'mitts' already, but is sleeping so I don't know whether it is worth it to call for someone to replace it (or them - can't see the other but if one is out the other is or will be).</div><div class="MsoNormal">10:15 He has worked the second mitt off and he is muttering to himself 'come on!' a sort of mantra ha has when something is thwarting him, though what is annoying him I don't know. I did make that walk finally for a book and to warn the nurse who had mitted him that he had gotten one off already, but so long as he doesn't do anything worse we decided to leave well enough alone. I've read the first chapter- a mere 25 pages - and like it so far - very different from anything else in my current collection, and it will do. Going to try to get some sleep now,.</div><div class="MsoNormal">7:50AM Friday Talk about famous last words. If I got 3 hours of sleep altogether spread out from 11PM to 6AM it is an overstatement. Part of the night was spent in a chair at his side holding his hand, part doing Reiki, pat going to the nurse station for water or more meds. He was loudly proclaiming his pain between bouts of arguing with some ghosts and apologizing to others. At 4 the aide told me I needed to request the doctor raise the dosage as they can't on their own. So I went down and formally requested that the doctor be asked for something stronger. As of 6:30 not only had no new stronger meds appeared but it was 7:30 before he finally received a dose of the same inadequate med. Apparently the 'on-call' doc got caught up in something in the ER and never returned the call. Now I wait for the doctors to make morning rounds to make my demand for relief.</div><div class="MsoNormal">Oddly, between howls of pain and 'help me' he has the occasional flash of clarity. When the aide finished cleaning him up this morning and I came over to hold his hand he opened his arms wide and pulled me down for a kiss, saying 'where have you been?' and when I told him I had been here all along he actually seemed to understand that yes, I had been answering his calls in the night, giving him water and doing Reiki. It seemed to help his mood. I promised I was not going to abandon him - I would be with him to the end. </div><div class="MsoNormal">So now I need the doctors to get here. <span style="mso-spacerun: yes;"> </span>I do have to make that trip home, but will come back with fresh changes of clothes and be here another two days uninterrupted. I find myself wondering if the equivalent of an epidural is possible to block pain in a similar way for patients in this much pain. If it was done below the spot on the spine controlling the heart and lungs it might help a lot!</div><div class="MsoNormal">8:20 Someone needs to be beaten senseless! Apparently, despite orders, it turns out he was <u>not </u>being given his prescribed pain meds! No wonder he was in such pain! So he is about to get a dose, and if that doesn't do the job he'll be put on a morphine drip in a couple hours. I asked about the epidural/nerve block idea for terminal patients and both of the doctors were clearly surprised - nobody had ever asked them about that idea. It will be brought up in their 'rounds meeting' as an option. Meanwhile he is still waiting for the kiss of painlessness.</div><div class="MsoNormal">8:45 AM Friday Just got his new higher dose of Fentanyl. If he doesn't feel significantly better by 9:45 they will start the drip.</div><div class="MsoNormal">9:05 the pain management specialist just checked in on us and he is finally looking and sounding less in pain. Not completely pain free by any stretch, but as she put it his pain had been 12 on a 1 - 10 scale. This dose only knocked it down to maybe an 8, so in 2 hours he'll get another to knock it down further and every two hours from there on. </div><div class="MsoNormal">Now waiting to talk to the doctor about what happens next and what to expect. The doctors are in a 'discharge meeting' which will break up into rounds in about 15 minutes. <span style="mso-spacerun: yes;"> </span>Once she and I understand each other I will make my way home and back.</div><div class="MsoNormal">9:20 Just had talk with doctor about what will happen. Liver already has stopped working, kidneys still shutting down. <span style="mso-spacerun: yes;"> </span>With no way to filter toxins and no way to eliminate them the brain will gradually be poisoned but by then he'll be on a morphine drip and far beyond pain or fear. He will finally pass when he stops breathing as his lungs fail. No exact time line, but the staff has been given hell over not helping last night, and she is getting him another dose now to bring his pain levels down still further. Even as we were talking about him doing better he let out a loud groan - clearly 8 or 9 is still too much pain. Once this second dose has kicked in I'll hit the road. Just need to gt a 'watcher' ready to take over while I'm gone. When I get back, if he cooperates, I may give him a manicure - his nails are such a ragged mess it will be more for the safety of myself and his other caregivers than neatness.</div><div class="MsoNormal">One thing I hadn't counted on was her hope that with the continued antibiotics his gall bladder would cease being so inflamed and his digestion might temporarily kick start enough to move his bowels and give him a little more time clear-headed. As long as he is still even slightly aware of me I am staying with him!</div><div class="MsoNormal">10:15 The second dose still not given because the IV blew out and so far a new viable vein has not been found. After so many years of being poked, stabbed and otherwise jabbed he doesn't have any left - they've all been used and abused and cannot be reused. Hoping he can get this dose sub-cu until the new IV site can be found, so still waiting.</div><div class="MsoNormal">11AM They called in a second IV installer, but apparently she had no better luck - his veins are shot. Happily, when I got back from my coffee run (direly needed after so little sleep) an alternative med and method had been found. I didn't catch the med name (will get later) but it is administered 'bucally' - in other words injected in the cheek (face) to absorb there. Can be given hourly at need. On the plus side at least he'll get his pain meds. On the down side they may have to shave him to find his cheeks! Given the options, clean shaven and pain free beats a full bush and pain!</div><div class="MsoNormal">1AM OK, Roxanol (morphine solution) is the new med - no puncturing needed - it gets sprayed on the inner cheek (my misunderstanding) so he will probably be 'out' until I get back, as he got a double dose. Back on the pain management track, and I'm hitting the road finally.</div><div class="MsoNormal">7:10 PM Friday This morning when I left it seemed everything was as good as could be expected. I went home and fed all the cats and attentioned them a bit. Exchanged info with S and T about our respective days, I packed fresh clothes and headed back. </div><div class="MsoNormal">Shock 1 - he was not in the old room, but now shares a larger room next door - roomie is blind and also a 'no contact' patient, so sharing is OK.</div><div class="MsoNormal">Shock 2 - everything about his condition had been changed. Instead of the cheek spritzes he is now on a continuous feed of Dilaudid which keeps him free of pain, but out like a (snoring) light. My first reaction was anger and pain - he is so under that we don't have any likelihood of further conversation - effectively they <span style="mso-spacerun: yes;"> </span>stole our last moments together. But then, thinking about it - he had not been particularly lucid before I left, and besides we had already said just about everything important, especially the apology and forgiveness, which had left both of us renewed and re-bonded. We had shared old memories and funny stories. Still, it hurt - too abrupt. </div><div class="MsoNormal">Then the doctor came in to see me and explained. It seems the cheek swab med would have quickly destroyed what's left of his kidneys - effectively euthanasia - so they had brainstormed and found this automatic Dilaudid feed was the ideal solution, as it won't have peaks and valleys - just constant relief, and won't destroy him prematurely. They had started him on a 'normal' dose, and he had promptly dropped asleep. They lowered the dose but he sleeps on. They just readjusted it to the minimum possible dose. I will stay tonight with him one last time, and if he does wake up without pain great. If he wakes up but is in pain I'll kiss him and tell him I love him and let them raise the dose again. It is far more important that he be <u>not</u> in pain. In that case, once he is once again comfortably asleep I will pack up all our varied effects and go home start making arrangements and wait to hear that he is nearing or at the end. I can't be angry, though I'm still a bit saddened, because so many people lose loved ones without our chance to set things right.</div><div class="MsoNormal">When the doctor was explaining it to me she counted his breaths - 12/minute then the dose was lowered and an hour later his respiration is down to 8/min prompting the nurse to say that it's just as well<span style="mso-spacerun: yes;"> </span>the dose has been lowered; this stuff can suppress respiration. Not a side effect I'm in favor of, so I hope once he adjusts to the lower dose his breathing will bounce back to 12/min or they may have to rethink this yet again or they might yet be guilty of euthanasia! I want him out of pain but not prematurely dead!</div><div class="MsoNormal">So I'll probably teach myself to count his breaths and check a couple times over the course of the night.</div><div class="MsoNormal">12:05AM Was wakened a bit past 11:30 by an alarm from his area. It turned out the pump for his meds had not been plugged in and was low on battery power. Once it had been plugged in peace reigned, but of course now I was awake. I had gotten irresistibly <span style="mso-spacerun: yes;"> </span>groggy and given in to sleep at 10:30, but once awake it proved elusive. So I went to the bathroom, chatted with the night nurse, listened to his breathing - now a fairly steady 12/min - and when she came back to go over what was needed with her successor shift I gave up and decided to read a while.</div><div class="MsoNormal">The Hydromorphone <span style="mso-spacerun: yes;"> </span>seems to be doing its job - he is sleeping soundly but breathing well and even when disturbed to be checked his eyes barely flick open. He will grimace briefly in pain but is already snoring again moments later. I feel OK with going home tomorrow - he's in good hands, caring and competent.</div><div class="MsoNormal">1:55 It's over. I was still reading when I heard his breathing change. I fetched a nurse who said it was fluid high in the throat, but a cough would clear it. I was dubious, but with the DNR there was nothing to do. A couple minutes later he stopped and I thought it was over. I kissed him and he gasped another breath. Another long wait. Another gasp. I went back and called the nurse to confirm what I already knew. At 1:45 he was gone. A doctor will come shortly to declare him, then I'll talk to an AOD (?) who will answer my questions.</div><div class="MsoNormal">I'm numb, but not grieving yet. At least I was able to keep my promise to be with him to the end.</div><div class="MsoNormal">2:20 Sept 17 Spoke with AOD, received info on available benefits toward the funeral. Got enough info to go forward, though I'm not looking forward to any of this. At least he is finally at peace. Now I get to dress, collect our scattered 'effects' and go home.</div><div class="MsoNormal">Saturday 11:30 AM Got home about 4:30AM - T saw headlights and knew it was bad news - gave me a hug that undid me. Left all the 'stuff' in the car to deal with later. Checked phone - nothing that needed dealing with. Poured a bit of Tully in a snifter and sent out a few email notifications then S showed up and 'invited' herself to toast him with my Tully. OK, got her out and went to bed. Slept deeply - no dreams I can recall. </div><div class="MsoNormal">Wakened at 11:30 by the resounding crash of the new town dumpster being dropped in front - must be a new guy coz the regular one is very gentle. </div><div class="MsoNormal">Called the funeral home in town and arranged to meet. S invited herself along to pick up a couple things (beer and vodka of course) but she had the sense not to come into the funeral home at least.</div><div class="MsoNormal">Happily I had all the necessary info either in writing or in my head and M was extremely pleasant and helpful. I only cried a little and we were able to settle things with a minimum of fuss at a price I could handle. The memorial will be a separate issue to be dealt with next week once I have an idea of what will work easiest for those travelling the farthest. I'm thinking weekday evening. The hardest thing is not having rooms for anyone. S has offered use of her room - that would work for two of them, but I don't want the rest sleeping on roll-aways . At least in mid week the local places won't demand a two night minimum. Still haven't eaten yet so that should be my next priority I suppose.</div><div class="MsoNormal">Sunday 9:30 AM Spent the rest of yesterday in<span style="mso-spacerun: yes;"> </span>fog except for a few hours. I wanted pictures of him for the memorial, one in particular of him under the flower arch in his tie dye. The search turned out to be both practical - I had to crate a folder and copy every picture I found into it - and therapeutic, as each picture brought up memories. I was stunned at how few I actually have of him, but then I only took up photography a couple years ago. I need to get that new all-in-one set up and see if the scanner will work wirelessly do I can download other pix from photo albums. </div>slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-74073571418702338552011-09-14T18:09:00.000-04:002011-09-14T18:09:23.596-04:00It's just about over<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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</div><div class="MsoNormal">When I went up to see him this morning I knew the news was not going to be good, but it was worse than I expected. His body has gone into catastrophic failure - the liver has basically stopped working, kidneys are failing, gall bladder is infected and inflamed which has caused his entire digestive system to shut down. His limbs are so swollen as to barely be recognizable. <span style="mso-spacerun: yes;"> </span>He was barely lucid enough to recognize me when I arrived, but that was partly because they had just given him Oxycodone for the pain in his belly.</div><div class="MsoNormal">The doctors were very kind, but very clear - there is nothing further they can do but keep him pain free. <span style="mso-spacerun: yes;"> </span>They offered to feed him intravenously, but there is no point, as it won't make him feel any better and will not extend the time he has left, which is measured in days. Besides, we had long ago discussed the options and he wants no feeding tubes, no breathing tubes, and now that it is so clear he is dying the DNR is in effect. </div><div class="MsoNormal">I will be going back up tomorrow to spend as much time as I can with him, and every day we have left, so I will probably not be in touch except sporadically, as they may well give me either a cot in the room or a room in the hotel next door so I can stay near him.<span style="mso-spacerun: yes;"> </span>It's all I can do now - just hold his hand, rub his poor sore feet and keep telling him I love him. I may even go back up tonight - I haven't decided yet, because I am so shaken by the suddenness. I don't want to risk the trip if I can't be sure of driving safely. I forgot to eat today, so I suppose I should do that before trying to drive two hours again.</div><div class="MsoNormal">According to his wishes there will be no funeral - his remains will be cremated, with parts distributed in several places, including the family plot. Later there will be a memorial, but probably a small one as he really had almost no friends left except me - most of the guests will be there for me. I wouldn't even bother, but it seems like the right thing to do - I'm still too lost to be rational about that at the moment. </div><div class="MsoNormal">I seem to cope very well one moment, then fall apart the next, only to gather up the pieces and move on the next. I suppose that is normal? Anyway, that is where things are for now, and the next few days will be rough. I knew they would be when the time came, I just wasn't expecting them so soon. </div>slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-71426406779085221352011-09-13T20:32:00.000-04:002011-09-13T20:32:02.982-04:00This just keeps getting worse<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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</div><div class="MsoNormal">Since my last update he has been in the VA - the nursing home would not take him back. They are set up for your basic Alzheimer's and/or dementia senior, where the biggest problem is mopping up spills and keeping them from swiping each others desserts - rather like pre-kindergarten. They simply were not prepared for a man in his 60s who is lucid and rational - if very unsteady - one minute, and powerful enough to do damage in a childish fit of rage the next.<span style="mso-spacerun: yes;"> </span>I can't say I blame them - the fact that I had been dealing with him single-handedly at home for the past couple years doesn't make it their kind of case.</div><div class="MsoNormal">In the meantime his health has been deteriorating precipitously. <span style="mso-spacerun: yes;"> </span>The apparent reason for the latest round of mental deterioration seems to have been a blood infection. Probably acquired it at the little community hospital where he was taken for his second set of staples, but who knows. The VA has had him on antibiotics ever since.<span style="mso-spacerun: yes;"> </span>His mentation has been erratic - rising and falling with no apparent reason. Last Tuesday he was barely lucid, and his legs were getting swollen. Last Friday when I went to see him he was grotesquely bloated in the belly, and his legs were worse than before. He was in such pain from the pressure - apparently gas in the gut as well as fluid - he was begging for a sharp something to stick in his belly to relieve the pressure.<span style="mso-spacerun: yes;"> </span>I wouldn't do that, obviously, but I did put one of his favorite CDs in the little personal CD player I had brought along, plugged in the headphones and put them on him. Immediately his whole body relaxed and he got a slight smile. His 'watcher' was astonished and said a heartfelt thank you on both of their accounts.</div><div class="MsoNormal">Monday I went in to talk to the doctors and the social worker (she had found an alternative nursing home in MA), and to sign some paperwork. <span style="mso-spacerun: yes;"> </span>The paperwork included his health care proxy, and power of attorney. The notary was very good about accepting his 'chicken scratch' - all he is capable of anymore, as sufficient 'evidence of intent' . Happily, also - he was lucid enough to concur vehemently that I should be in charge of both. <span style="mso-spacerun: yes;"> </span>So that makes it easier for the doctors to discuss everything with me directly. <span style="mso-spacerun: yes;"> </span></div><div class="MsoNormal">My first test came when I was called about a procedure they had wanted to do, involving putting a tube down his throat to have a look at the back side of his heart - they were concerned that the blood infection might have affected the heart. However, the test would have involved him lying on his poor bloated belly - not good - and further he would have needed partial sedation, which in his case would have also required intubating him so he could breath - with the distinct possibility that they would not be able to un-intubate him afterwards. Not good!!! One of the big no-nos when his dad died was his determination never to allow himself to be put on long term life support with tubes. If he came out of the procedure, even if his heart was found healthy, being stuck with the breathing tubes would have rendered him suicidal. <span style="mso-spacerun: yes;"> </span>The other option - changing antibiotics and keeping him on those for another 10-14 days to eliminate any chance of infection was far preferable. I explained the situation to the doctor succinctly and she agreed that I had made the best choice for him. Round one of my newly 'official' duty as health care proxy was a win.</div><div class="MsoNormal">However, he had called complaining that his personal CD player had died, so before I hit the road I stopped at Walmart and picked up a replacement. Unfortunately when I got to the hospital the bloody thing didn't work - wouldn't even turn on. <span style="mso-spacerun: yes;"> </span>Aggravated beyond belief since this had been his one solace in all the pain and confusion, I took the players - both the old and the new, and all the batteries & CDs with me when I left. <span style="mso-spacerun: yes;"> </span>Once back at the store I took the precaution of buying fresh batteries, just in case somehow old batteries had been mixed with the new. The thing still didn't work, so I took it, the receipt, the new batteries and That receipt and got my money back. Then I went to another store where I found a player that actually works, (I tested it in the parking lot to be sure).</div><div class="MsoNormal">Today I was so worn out - I never sleep well after that trip, and him calling at 10:30 and waking me up didn't help. He must have sounded rational for the nurse to call me at that hour, but once he had me on the phone he made no sense, babbling on about me bringing<span style="mso-spacerun: yes;"> </span>pound or two of raw shrimp and a bunch of colas and something else, for him to share with his 'roommate'. He has no roommate - only an orderly or some such to keep an eye on him. I yessed him so I could get him off the phone and called this morning to confirm - no roommate. <span style="mso-spacerun: yes;"> </span></div><div class="MsoNormal">My friend had told me she had the day off, and I was welcome to come hang out with her so since I couldn't focus on my own needed work I decided to go visit and play hooky.<span style="mso-spacerun: yes;"> </span>We talked - some about her troubles, some about mine, then got busy cleaning out a shed that badly needed it. Funny how I wanted to dodge my own work, but helping her with hers was fun ;-)</div><div class="MsoNormal">Unfortunately when I got home all H E double hockey sticks had been breaking out. I missed the one doctor (she got off at 4 I only got home at 5:15 - but I did call the ward and got a little caught up. Then one after another other doctors called. Apparently the scan of his gut was inconclusive. They were trying to determine if there was a physical obstruction blocking him, and thus preventing passage (hence the huge swelling) but the contrast dye they needed to really see is bad for hid failing kidneys, so they went without it and didn't learn anything useful. Meanwhile he can't eat or drink, because his intestine isn't moving. That means the usual buildup of toxins is getting worse, because the meds that usually force him to a constant state of diarrhea are not able to do their job. Then the surgeon called to say that a surgical intervention was out of the question - both his liver and kidneys are too compromised. The best they can do at this point is 'keep him comfortable' and hope the enemas and other medical options free up the blockage on their own.</div><div class="MsoNormal">Then he called, sounding down. He was semi-lucid again and aware that this is not a good turn of affairs. The last time doctors talked about 'keeping him comfortable' they were sending him home with a quart of liquid morphine to die. That time I had good health insurance through my job and I got him into Mount Sinai in NYC and he made a comeback. This time it is all different - I have no insurance, and he has run out of options except what the VA can offer. He knows it and is finally really facing the idea that he might not make it to his 61st birthday in December.</div><div class="MsoNormal">Tomorrow I will probably get a call from one doctor or another before I hit the road back up with his new CD player, and maybe they will have some kind of further suggestion or option. Otherwise I am simply going to continue to be honest with him when he is lucid enough to understand, keep him in batteries so he can enjoy the last pleasure he really has - his music - and be there for him. What else can I do? </div>slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-87873951128424226662011-08-24T04:13:00.001-04:002011-08-24T04:14:37.060-04:00Another Sleepless night...I had meant to get an update out yesterday, but since I am now awake at 2:45AM I might as well do it now. <br />
The doctor followed through on my suggestion and did an ultrasound - his stent was fine, in position, and working. They also determined that his gut fluid levels were not what they had feared and passed on doing the needle test. Instead they raised the dosage of his meds and kept him under watch.<br />
<br />
Once his ammonia levels were back to a reasonable level and he no longer required constant medical care, just the constant supervision, they located a relatively local nursing home about half way between me and the VA, with both a dementia ward and rehab facilities. When I had spoken to the social worker I had made it clear that if he was given rehab and he improved enough that he could be safely left unattended for periods of time I wanted to bring him home. This sounded like an ideal 'half-way house'. <span class="moz-smiley-s1"></span><br />
<br />
Except that the day after they transferred him there, as I was en route to sign the admittance papers, he took a fall, cut his head again, and was transported to the local ER - 4 more staples in his head. He seemed reasonably alert and cheerful, though still a bit confused, so once they were ready to release him I personally drove him back to the nursing home. He was not at all happy when we got there - he clearly thought that my being there had meant he was going home. I felt lousy leaving, but he seemed to understand what I was saying; if he works well at the rehab so he can move around better I would bring him home. <br />
<br />
However, when I went back up to get the papers finally signed the next day it seems there had been a miscommunication. The VA was putting him there long term, and unwilling to pay for rehab. As nearly as I can figure it they know that with every new encephalopathic episode he would 'lose' everything he had relearned, so it made more sense to simply put him in the dementia ward. I was unhappy, and questioned the wisdom of doing it this way, so they were going to set up a three-way conference between the staff, the social worker and me for some time this week, to discuss the situation.<br />
<br />
He called tonight, around 8PM, sounding agitated, angry and confused - he wanted me to come get him. He hates it there - the other patients - all full-fledged dementia and Alzheimer's patients drive him crazy. The staff doesn't do anything he wants them to do. They tell him what to do. I tried to soothe him. <br />
<br />
I also reminded him that even at home he hadn't done the walking exercises the physical therapist (at the VA months ago) gave him. He also had refused to do the mental stimulus exercises - puzzles, reading etc that he was supposed to do to boost his mentation. So if he still was having trouble walking and reasoning he clearly needed 24/7 watching, which I couldn't do at home. He got angry - to the tune of 'thanks for nothing'. I know I was right, but it didn't make me feel any better. He also complained that he didn't like the food - they kept bringing him hamburgers, and he is supposed to be on a very low protein diet. That upset<u><i> me</i></u> and I promised I would be on the phone first thing in the morning to find out why he was not being kept on the proper diet. That seemed to help calm him a little.<br />
<br />
So - at 2:45AM the phone rang. I was annoyed and muzzy-headed - I had finally gotten deep into the most healing sort of sleep - but it was neither a wrong number nor some touron looking to book a room. It was the VA social worker. He had just been taken back to the local hospital after another fall. More telling was that his mental status had taken a nose dive. He had gotten up to go to the bathroom, which happens several times a night, but he neglected to remove his pants first; needless to say he managed to make quite a mess . The staff tried to help him and he became aggressive, combative. Then he fell. <br />
<br />
I explained to the social worker, who clearly thought this was some radical new symptom, that no - this has happened before, while he was still under my care at home (fun to be me, huh?). It meant he was having yet another incident and his ammonia levels were probably through the roof either because he was not on his proper dosage or due to his diet. I wanted him moved to the VA, where they know his history. She recommended calling the ER and filling them in on both his condition, and my request for the transfer. So I got the number from her and called. The nurse said she would inform the doctors of both the reason for his condition - encephalopathy (I didn't get into the diet as the most likely cause, as it wasn't relevant to the situation) and my request for a transfer. No promises - but at least I had given them a starting point for treatment. I'll call again in the morning<br />
<br />
So here I am - once again awake in the middle of the night due to his condition, even though he is supposed to be getting proper care by competent staff. At least I know it wasn't anything I was doing wrong now, but I am very unhappy with the nursing home and the VA at the moment. I don't know how many miscommunications I haven't yet discovered. First being put there for long term care in the dementia ward rather than getting help in rehab (though as I said, I think I understand why), then not keeping him on a low protein diet. I need to talk to the staff and find out if they were even informed of that - and if so why wasn't he being given the correct food? If not I want to know who briefed them on his needs. <br />
<br />
Even at the VA there were miscues about that. When I first saw him after his gall stone incident he had been given chicken with cheese over it for dinner - not exactly low protein in my book! When I questioned the nurse at that time she said 'oh no, he's on a low fat diet for his gall bladder'. So apparently the gall bladder doctor rules over-rode the liver doctor rules when he really should be on low sodium (blood pressure) <b><i>and</i></b> low protein (liver) <u><i>and</i></u> low fat (gall bladder). Not an easy diet, or particularly palatable without careful thought, but doable. I was doing it as well as I could at home, but here they don't even seem to be aware of the need. <span class="moz-smiley-s2"></span><br />
<br />
Yet even at home, even with me keeping on top of his meds <u><i>and</i></u> keeping him on the prescribed diet, he still fell back into this state, so maybe he has gotten past the point where anything is going to help for any length of time. One of the doctors did say that as the disease progresses his liver is going to do worse and worse, and no matter what we do his ammonia levels are going to rise. The rest of his organs are already compromised - his kidneys are already struggling with the strain; not yet to a point of needing dialysis, but they are watching them. <br />
<br />
So how am I supposed to go back to sleep after all this? It's almost as stressful as if he was still here. The only difference is that I didn't have to be the one cleaning up the mess or driving him to the hospital, and I am home rather than sitting up in the glare and noise of another ER. It never stops. However, when I think about what it will take for it to stop, I bite that thought back, because with his condition only two options will make it stop - a liver transplant or death. The odds of him getting a transplant now are remote due to the advanced damage to his brain - what kind of quality of life would he have? Why make him healthy enough to spend 10 years in a dementia ward instead of just one or two?<br />
<br />
I reiterate what I said earlier. This sucks.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-19676725374497771982011-08-09T12:11:00.002-04:002011-08-24T04:20:31.583-04:00OK, now what?This stinks. I would say it sucks, but that doesn't cover it either and I never liked the phrase, pithy though it is. I wrote the following and meant to send it out a couple days ago, but mental inertia left me unable to follow through.<br />
<br />
<div class="MsoNormal"></div><div class="MsoNormal">The last time I picked hubby up at the hospital I had told the social worker I wouldn't 'warehouse' him until I looked in his eyes and didn't see him there.... Well, yesterday I called in time to catch the doctor. I asked how he was doing and if I could pick him up. Instead of the usual yes, he's ready, come and get him I heard Come on up and evaluate him to see if you want to bring him home. Uh oh.</div><div class="MsoNormal">I figured OK - new ward, different doctors, not familiar with him. Maybe they just weren't sure what his baseline behavior was and were worried. So I packed sweat pants (easy on, comfortable for a long rife), socks, sneakers and a t-shirt. Loaded them into a small backpack that could hang from the handles of the wheelchair for ease of transport, and off I went. </div><div class="MsoNormal">When I checked in at the nurse's station I realized I had been wrong about one assumption - it was, in fact, the same ward he'd been in the last two times he'd been kept. Then the nurse, one I had spoken with on previous visits, told me again that I needed to assess whether I could handle him. Still optimistic I said OK and trotted on down to the room she told me. There was, as last time, a 'watcher' on duty - usually this has been to avoid falls. This time it was more urgent. He had apparently ripped out his IV, so they were now giving him his antibiotics in pill form. He was lying partially sideways on the bed, legs hanging off the edge. When he saw me he barely reacted except to say "OK, let's go!". For a long, hopeful moment I thought it was his usual anxious desire to get out of the hospital, but it quickly became obvious he was not right. </div><div class="MsoNormal">He couldn't focus on my face when I tried to talk to him - his eyes were constantly flicking here and there. I asked if he knew who I was. I had to ask three times before he finally said my name, and even then he couldn't hold my gaze. He wanted to know when we were going to leave. I said he had to get dressed first - he didn't want to leave in pajamas, did he? He said "I don't give a shit!". </div><div class="MsoNormal">I said "But I do!" and gave him the socks I had brought. I was already having serious doubts at this point, but I told him if he could get dressed we would go. Five minutes later he finally finished putting on the first sock, in between bouts of laying on his back repeating his mantra 'OK, let's go!". Apparently he had been saying that all morning, not just since I arrived. I asked to speak to the doctor. I was left alone with him for about ten minutes while the watcher went off to find the doctor and nurse. During that time he asked me to come closer. When I did he grabbed my arm hard enough to leave a bruise. I jerked out of his grasp, but resolved to keep my distance after that. I tried to help him with the other sock, and accidentally hit his foot in my crotch. That set him off on a round of 'inappropriate' talk - demanding that I drop my pants. When I declined he repeated it several more times, and when I still refused he said that maybe he'd 'get the black nurse to drop hers too'. </div><div class="MsoNormal">When the doctor and nurse finally arrived I told them what had been happening. He was worse now than he had been when I brought him in! The doctor said maybe it was partly the environment - some encephalopathic patients improve more quickly in familiar surroundings. However, he admitted that they wouldn't demand that I take him if I felt it wouldn't be safe. I explained that I couldn't possibly spend 24/7 watching him - I have a business to run, sometimes needing to be away for anywhere from a few minutes to a couple hours. How could I possibly handle him considering they didn't dare leave him unattended? They understood, and called the social worker I had met last time.</div><div class="MsoNormal">She explained that he would have to be kept there at the hospital until they could find, possibly, a sort of half-way house, a real rehab where he might have enough stimulation that his mental status would improve, unlike in the tiny room with a watcher. If he improved sufficiently I could still take him home. If he didn't they would find a long term facility. </div><div class="MsoNormal">It is one thing to know 'that day will come' but you always keep hoping it won't, or at least not yet. As they said, they are going to up the dosage of the meds to bring his ammonia down, and maybe in a few days he will be improved enough to bring home... However, it is guaranteed that he has suffered still more brain damage, and even if he gets better, each time this happens he loses more of what makes him himself. Clearly the normal dosage has not been helping enough, or he wouldn't have been so bad when he arrived - so obviously his liver is doing worse than ever. What scares me is that he is worse now than when I brought him in! I had told them he had been on a regular dosage except for the couple days he was short because their pharmacy didn't deliver on time. Why didn't they raise the dosage immediately?</div><div class="MsoNormal">There had been talk about a liver transplant, but as I said to the social worker - what is the point of a transplant now, if his brain is so far gone? What kind of quality of life is that? Her response; that's a decision you'll have to make. I know, but it sucks! We had discussed the choices of being kept on life support - NO! Somehow the idea of being basically brain-dead but relatively healthy physically never came up. We never arranged a health care proxy, or power of attorney. If he doesn't improve radically in the next few days it is going to get a bit complicated, as well as heart breaking.</div><div class="MsoNormal">I feel numb. Yesterday I didn't dare cry until I got home, but even then I only cried briefly. I guess I still feel it is too soon to go into mourning... he isn't dead yet...<br />
This sucks. </div>slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-73303176609319243492011-08-06T14:49:00.001-04:002011-08-06T14:51:16.688-04:00Another week, another crisis<div class="MsoNormal">Sleep deprivation caused by care-giving is strange. On the one hand you stumble through your day with gritty eyes, heightened sensitivity to noise and light, and emotions alternating between frayed and raging to numb and muffled. On the other hand when night comes you are torn between wanting to crash early to get what little sleep you can before the nightly round of interruptions begin and taut wakefulness waiting for that first shoe to drop...<br />
</div><div class="MsoNormal">Last week I was stressed - one of his most important meds was not scheduled to be delivered in a timely fashion, another needed a refill that required talking to the prescribing doctor, who I couldn't get in touch with. Being without one starts the spiral into mindlessness, lack of the other could allow the seizures to return. I made what phone calls I could to set things in motion, even made a 4 hour round trip to pick up a partial refill of one to tide us over until the 'real' refill arrived.<br />
</div><div class="MsoNormal">Unfortunately a couple days on short rations of the anti-ammonia med allowed him to slip into another round of encephalopathy, which is both scary - each new round does more brain damage, from which there is no recovery - and frustrating for both of us, as it makes it hard for him to communicate or understand. This caused stress, and the stress caused the ammonia to rise still more. Minor falls increased, and his temper with it.<br />
</div><div class="MsoNormal">He always gets up hourly to potty but I was so exhausted that when he started getting up every 15 minutes I was too out of it to realize it was a new symptom. By night three he was getting up every five minutes, heading for the bathroom, seeming to forget why he was there (coming or going?) coming back, often needing help to get back onto the bed (still more sleep loss for me) then getting up again almost immediately. </div><div class="MsoNormal">Finally Thursday night he stumbled and took a bad fall. Half asleep, I actually heard and recognized the stutter-step that meant he was about to go down, but there was no way to get to him in time. Down he went, hitting his head on the corner of his nightstand. I flew out of bed - this could be serious! Scalp wounds are a bloody mess at the best of times - ever watch a wrestling cage match? - but with all the damage his poor head had already taken I was in a panic, though I had to hide it so he wouldn't get agitated. I cleaned him up as best I could to get a look at the gash, but it was really hard to see - at 60 he still has most of his hair, and it was blocking clear view of the damage. I got on the phone with the ER for advice, and sure enough he strongly urged me to bring him in ASAP.<br />
</div><div class="MsoNormal">So after less than one solid hour of sleep, at 3 AM, I downed a 5 hour energy, got him at least partially dressed, plopped him in the wheelchair and got him into the car. I kept him talking - I vaguely remembered something about keeping concussion victims awake - and it didn't occur to him to ask where we were going until we were almost 1/2 an hour down the road. When I told him we were going to the hospital so they could check out the cut on his head he suddenly realized it hurt. Poor baby hadn't even remembered he had hit his noggin until I reminded him. He complained briefly about the headache, then got sidetracked by a random thought and forgot about it until we got to the hospital.<br />
</div><div class="MsoNormal">So we arrived - thanks to my pre-calling they had all his records and new wrist band waiting. The cut required a partial tonsure so they could evaluate the damage, 4 staples (painful even after they sprayed it with numbing stuff ) and a CAT scan to confirm that he had not, in fact, suffered serious new damage. I took advantage of the presence of the doctor to inquire about the concussion victim being kept awake theory, and apparently what I had heard was partly right. If a possible concussion falls asleep it is OK, but they have to be wakened every two hours. If they cannot be awakened, then they have to get special treatment. Note to self...<br />
</div><div class="MsoNormal"> They had tried to get him to use a urinal - no luck, though he painfully needed to pee. They tried a bus-mans friend, but nothing came out. Finally they catheterized him, and he got relief - and we got our first clue as to the third issue - he had a UTI, and his prostate was slightly enlarged - which explained the potty shuttle and another cause of his loopiness. I felt guilty - if I hadn't been so exhausted maybe I would have recognized this increase in bathroom visits, with scant results, as a new symptom. But they soothed me - I was doing a great job, and as tired as I was this was easy enough to miss. Between his muzzy-headedness and the stink and mess of his constant diarrhea, noticing cloudy pee and changed odor would have been impossible, and the extra visits could have been him forgetting why he was there.<br />
</div><div class="MsoNormal">So they put him on antibiotics and found him a bed, and by about 11:30AM they had enough info wrung out of me I was released to go home. Between the bright sunshine and the relief that he was in good hands I made it home in one piece. I fell into bed about 2PM, was rousted twice by phone calls, but mostly slept till 6. Got up, ate, puttered in the kitchen a little - dishes mostly - then back to bed for a good night sleep.</div><div class="MsoNormal">Called and spoke to him Friday evening. He was convinced he was coming home today, and had his young nurse believing him, so I went to bed sure I was getting my last sleep for the foreseeable future. Happily, today his day nurse set me straight; he is in no state to go anywhere yet, and will probably not be cut loose until Monday - maybe Tuesday. She completely understood the way I was torn between relief and guilt at that relief - she wanted to know how it was I managed as it is! Honestly, I said, I don't know - I just get from one day to the next as best I can.<br />
</div><div class="MsoNormal">So now it is raining, and I should be doing some of the cleaning and organizing I keep promising to do on a day like this - can't weed in the rain. But my head is still too muzzy to do much more than set this down so I have a record of the sequence of events - the primary reason for this exercise.<br />
</div><div class="MsoNormal">Before I left the hospital, clearly knowing the whole history of what had been going on, and how hard this all was on me, and that there had been a search on for a 'home' for him, the doctor asked if I was planning to take him home again once he was back to 'normal'. He seemed surprised, impressed, puzzled and concerned when I said yes. </div>slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-60377668451728826202011-07-07T12:50:00.000-04:002011-07-07T12:50:28.860-04:00not looking good<div class="MsoNormal">As hard as it is to write this, it looks like things are coming to a new crossroads with hubby. Some of this I have copied from an email I already shared with a couple of you, to save time, but there are new matters as well. </div><div class="MsoNormal">On July 1st I had to take him to the ER again because I feared he had sprained an ankle in one of his falls. He was unable to walk, or even crawl properly on his way to the bathroom, and was apparently in pain, but couldn't clearly tell me where he hurt. They discovered a broken toe, possible wrenched hip, and a CAT scan showed several small bleeds in his brain - probably from hitting his head in falls, rather than new strokes, but damage is damage.</div><div class="MsoNormal">Even though I have ensured that he has been taking his meds on schedule, which the VA blood tests affirm, his mind and body are continuing to fail at an accelerating pace. He has flashes of lucidity where I still see glimpses of the man I married, but they are getting fewer, farther between and less clear each time. </div><div class="MsoNormal">Between the stroke, the damage done by his failing liver and the falls, he has trouble with everyday stuff like dressing himself, eating, walking, communicating clearly - you name it.<span> </span>For example; in the course of being a cabinet maker he used to be able to calculate just about anything in his head - now he cannot come up with the square footage of a room, given the numbers and a pad and pen. Even simpler tasks - sorting a box of his socks - are beyond him.</div><div class="MsoNormal">The fact that he knows what he used to be able to do, and now can't, eats at him, obviously. On his good days he is cheerful, tries to be helpful, and is a joy to be around. On moderate days he spends much of his day sleeping, then comes outside to watch me work. On bad days sometimes he gets cranky as a 6 year old. For example, he'll start demanding beer- which, obviously I cannot give him, though I do get him Busch NA as an occasional treat. Sometimes he is convinced he should be able to get his driver's license back and take off on his beloved motorcycle - this despite his huge balance issues and depleted strength. Often he just wanders around mumbling to himself until he loses his balance and falls and I have to fetch the wheelchair and help him up. He often feels sorry for himself, which I can understand, but his bad attitude becomes hard to tolerate sometimes. Usually he'll rant a while, then fall asleep, remembering nothing of it when he wakes up. Essentially it amounts to early onset dementia.</div><div class="MsoNormal">The VA had been on the verge of considering whether Wayne is a good candidate for a liver transplant,<span> </span>but as his doctor already told us recently, the ammonia in his blood has given him permanent brain damage. Between that and the trauma from his frequent falls I find it hard to believe they will push for such a risky, not to mention expensive operation, knowing that his quality of life afterward will be so poor.</div><div class="MsoNormal">As of this morning the VA doctor I spoke to is concerned about the practicality of sending him home, as even in the closely monitored confines of his hospital ward he managed to take another fall. I just got off the phone with a VA social worker who went over what our recent home life had been, and it is clear he will not be coming home soon.<span> </span>She said the physical therapists and doctors will be conferring with the other team members and will get back to me later today with some options. </div><div class="MsoNormal">One possibility is a temporary stay in a rehab facility to try and improve his physical strength and balance enough that he can come home, at least for a while. In the long run, however, it begins to look like a nursing home may be the only answer, and that scares me. He gets so moody and difficult, and I've heard horror stories about the abuse<span> </span>endured by mentally incompetent patients either from other patients, <span> </span>through malice, or simply frustrated, overworked staff. I told her (the social worker) about my concerns, and <span> </span>I'm afraid I broke down in tears but she was very understanding, considerate of all the stress I've been through.</div><div class="MsoNormal">With all I've had to deal with I my own health has finally also suffered - I am in the throes of the worst summer cold I've ever had, barely able to get out of bed for the past 3 days - thank goodness for my laptop - it kept me from feeling completely cut off from the world. This cold hit hard, despite eating well, and taking a carefully selected bunch of supplements. A big part of the problem has been sleep deprivation, as the nights are frequently disrupted (he falls on his way to the bathroom at least 4 times a week).<span> </span>It was a blessing in disguise that he had to be hospitalized when he did, as I could never have taken care of him in my depleted state.</div><div class="MsoNormal">I am blessed with a great support system, however - at least once a week I take off for a couple hours with one or another of my three girlfriends, or just by myself to Woodstock, to the flea market, or to join the Sunday drumming circle. <br />
</div><div class="MsoNormal">Also, since I have had to face the possibility of losing him so many times over the past 9 years, I have had time to accustom myself to thinking ahead to a life without him. It is actually harder to deal with 'losing him' while he is still alive, but not really aware. That is what triggered the tears.<br />
</div><div class="MsoNormal">However, though I wish it could have come out differently, I am prepared mentally to carry on alone. I love my little motel and my area, and have no plans to pull up roots or do anything rash. If he does wind up in a nursing home I may take a vacation, but that's about it. Living in such a beautiful place, while there are drawbacks (bears raiding the dumpster for example), is living the dream for me. </div><div class="MsoNormal">Anyway, I won't know for sure until I get that call later today, at which point I'll post a follow up, but I wanted to send this out while my head is relatively clear. If the news is really bad later I may be too flustered or upset to state this so lucidly.</div>slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-56076121591182116812011-05-28T07:55:00.000-04:002011-05-28T07:55:29.022-04:00Getting badThe last few weeks have me scared. Two visits to the VA ER in as many weeks, and he's just getting worse. The ER trips were his idea, so I know he was hurting . The first one was Saturday two weeks ago. He was having acute abdominal pain and, it turned out when we arrived, a fever. They kept him for two nights. Me they kept for one, on a gurney in an exam room. That way I was accessible to sign permission paperwork if they needed to operate. Also they were concerned about me trying to drive the two hours to get home at 4 in the morning.<br />
<br />
Two days later, after multiple tests and no food, just a glucose drip, they still didn't know what was wrong but he wasn't hurting, so they finally fed him to see if he could eat without ill-effects. When he not only ate it enthusiastically but it caused no pain they sent him home with a bottle of antibiotics for the infection causing the fever, apparently connected with his gall bladder. <br />
<br />
During the follow-up with his gastroenterologist everything seemed back to 'normal' and he was even given a scrip for a new sleeping pill for his chronic insomnia.<br />
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The day before he was due for the follow up with his primary he was once again in pain and so we went off to the ER again. This time I had a few minutes to call ahead so they had his records pulled and appropriate doctors on standby.. They appreciated the courtesy, since it gave them time to prepare before we arrived.<br />
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This time I was able to head for home by 2:30AM while they admitted him. Two more days of nothing to eat because this time the ultrasound had them fearing a blockage in the intestine. Finally they determined that he had simply managed to pass a gallstone, on his own and probably before we even got to the hospital. The pain that sent us there had probably been that passage. No fever this time, no infection. Nothing new to deal with - just a formerly discontinued pill added back to his regimen to help him pee, and another adjustment to his diet. (sigh)<br />
<br />
He was already restricted. No alcohol of any kind - a no-brainer, since that is what destroyed his liver in the first place. Low sodium for his blood pressure - easy - we don't use salt much anyway . Low protein to protect his liver - a little tougher since he was raised on meat and potatoes. Happily I had been widening his acceptable food range for years, so it could have been worse. Now, however we also have to go low fat, particularly the high cholesterol type, to avoid triggering another gall bladder attack. He does enjoy the occasional greasy slice of pizza or a hotdog from the local vendor (yuck), but when I described the sort of foods I already customarily serve him - the primary oil I cook with is olive, and he's almost vegetarian already - they approved. So at least I seem to be doing my part in keeping him healthy.<br />
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I do feel a tiny bit less guilty about some of his falls now. He needed assistance every time he had to go to the bathroom, which with his meds is approximately hourly. Even with a professionally trained nurse or orderly helping he managed to take a nasty one, hitting his head on the tiles. Nothing tripped him; as he put it 'all of a sudden I just went down'. They were all set to take him for a head scan but apparently decided he wasn't damaged. <br />
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The scary thing is that I've been watching him, observing patterns, and they don't bode well.<br />
<br />
When he eats, using the utensils with big rubber handles the VA provided, he does everything with his left hand. That <i><b>is</b></i> his dominant hand, but he used to use his right for things like helping to cut food, holding the edge of the plate or pushing food with a piece of bread. Lately it just lies there.<br />
<br />
He had been having trouble writing - even unable to sign his name. I made him a printout of the alphabet, like back in grade school, as a guideline to help him relearn. His handwriting did improve a bit with practice, but he only gets through his first name and the first half of his last before he forgets how it goes and I have to help. <br />
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Getting up for a middle of the night potty run is never easy - that's when he takes most of his falls - but tonight was scary. He went down almost as soon as he got off the bed, but needed to pee so badly he didn't want to bother trying to get to his feet, refusing any help - he preferred to crawl on all fours. I gave in in the interest of keeping the peace, simply standing close by to help if he required it, however I noticed that his right arm wouldn't support him and his right leg seemed to not cooperate either. I also had to help him aim his butt when he finally made it to the bathroom, or he would have shat on the tub bench instead of in the toilet. <br />
<br />
I'm really afraid he had another stroke at some point and has now lost still more of his already limited physical ability. :-(<br />
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If he hasn't started improving by the follow-up with Gastro on June 1 I'm going to ask that he be tested. If he is going to require round-the-clock assistance I am going to need help, or he is going to have to live in an assisted care facility. I can't run the business and be full time caregiver at the same time. Thank goodness the powers that be determined that yes, he is completely unemployable, and he has been bumped up from 50% to 100% disability. That should guarantee good care wherever it is going to happen.<br />
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Another bit of good news is that the new sleeping pill seems to work. Even though he slept most of the day away yesterday, when I gave him his evening meds, including the newly arrived sleepy pill, within an hour he was out like a light (at about 11PM) and seems to have slept right up to 4:30AM when he needed to go potty. Once that ordeal was over and he was back in bed I held his hand and he fell back to sleep quickly.<br />
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Wish I could say the same for myself. After tossing and turning for 45 minutes I gave up in favor of updating this. So here I go, into another day on 4 1/2 hours sleep. Oh joy. Sleep deprivation is such fun.<br />
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On top of all that, I had no sooner sat down to take a leak a few minutes ago, when the phone rang at 6:45AM!! It was the woman who had been beaten up by her spouse. She's doing much better, and has been looking after the cancer guy's dog while he is in the hospital with diverticulitis (yep, it's been a busy week). She had managed to lock herself out of her own room and needed to get ready for work.So I used my key ring to let her in.<br />
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Now it is 7:15 - no hope of further sleep, and it promises to be a real warm one, so I need to get busy potting up my newly acquired plants. I may have had to cut way back on the garden this year, but I still need to grow some of my usual, for decoration and food. So lots of tomatoes, basil, one eggplant, and a whole bunch of petunias and geraniums.I'll throw a bunch of nasturtium seeds into the mix, and maybe add some other plants later, but this will do for now.<br />
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The room renovations are 2/3 done, but clearly not to be finished today, so the big holiday weekend is a bust. Oh well, at least they will be finished in time for summer business. The inspector checked the electrical work yesterday morning and signed off on it, so today the sheet-rock starts going up. Once that is done and painted we call back the electrician and plumbers to finish hooking everything up and I can add shelves, stock the flatware and plates etc. I already have a table and chairs for one room, and with flea market and yard sale season now in full swing, finding a second set should not be too difficult.<br />
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I'll also be getting queen size beds - one per room - to replace the two doubles currently in each. I can always bring in a rollaway if someone needs extra bedding for a child. Two beds were going to be too much for the rooms now anyway. with almost 1/4 of each room now kitchenette. Most folks prefer queen anyway, so that's the way I'm going. It will also help discourage families with multiple kids - a plus, since historically I get less trouble with dogs than children.<br />
<br />
So a bit more work - maybe a weeks worth, and voila' - mini-efficiencies. Small steps to self sufficiency. My personal art room will get done eventually, but right now there is simply not enough hours in the day or energy to worry about that. Soon, but not now.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-14309853278048657752011-03-02T18:42:00.000-05:002011-03-02T18:42:12.507-05:00Things are thingsWell, he is taking his meds without complaint (well, mostly) and we are waiting for the new batch of nicotine patches to arrive because he is finally willing to give up his little Backwoods cigars. Next week he starts a round of physical therapy that will hopefully help him regain some of his balance and strength. His attitude is much improved as well.<br />
<br />
The problem is that his mental faculties are still slipping. He cannot remember things even five minutes after we have discussed them. He loses his train of thought at the slightest distraction - even just my turning down the volume of the radio in the car so I can hear him better will cause him to completely forget what he had been about to say.<br />
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He found some paperwork yesterday from after his last DWI was over, telling him he could get his license back. This dated back from before the incident of him driving without said license. He couldn't understand why I kept telling him he was not going to be driving again. The only thing he was thinking about was getting out on the road on his motorcycle - but he was forgetting how heavy it is, and how weak - not to mention unbalanced - he is, and all that on top of being on two different anti-seizure meds. He was frustrated by my inability to 'see reason' - he had the paper saying he could - why did I keep telling him he couldn't? :-(<br />
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Somehow I finally got through to him, but chances are we'll go through this again several more times. My best bet is probably to file the paperwork where he won't keep seeing it, triggering another go-round <sigh> <br />
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He still doesn't sleep well at night, which means he sleeps away a sizable chunk of the day - a vicious cycle. I'm tired too, because his nocturnal restlessness often wakes me. He's only 60 but looks like his old man did at nearly 70 a couple years before he died - it is scary. I'm not ready to lose him, but....The notion of not having to watch him deteriorate any further, not to have to clean up his messes (he spills things constantly due to inattention and hand tremors that just keep getting worse) The idea of sleeping through the night without being wakened by another crash as he falls on his way to the bathroom again... Sometimes it is so tempting to just wish it was over :-(<br />
<br />
Then he pulls me into his arms and it feels so right I know I will just keep trying as long as I can.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com1tag:blogger.com,1999:blog-5923296248006941229.post-48612814603322765422010-12-14T12:02:00.000-05:002010-12-14T12:02:39.303-05:00A Second ThanksgivingLast Monday evening we finished off the last of the Thanksgiving leftovers, but with a brand new sense of counting blessings. We had made plans for a trip to the nearest hardware store to pick up a few items followed by a visit to a friend who has a small couch she wants to get rid of that might be useful. Because of that detail we were in the Ford Ranger pickup instead of my Sonata when we hit a patch of ice. <br />
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By the time the world stopped spinning our truck was totaled, another truck was damaged, the axle had been ripped from under the U-Haul trailer the truck had been towing, and both of us and the driver of the other truck were loaded into two ambulances to be checked over. <br />
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Amazingly all we suffered were minor bruises, facial abrasions from the airbags, soreness from the seat-belts we both were wearing and a bad case of the shakes. The other driver was a bit more banged up, according to the EMTs at the scene, but will make a full recovery. <br />
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Thank goodness for those airbags and seat-belts. <br />
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The merry-go-round started at 3:30 PM - we were finally cut loose from the ER at 9PM. Being suddenly pedestrians we called a friend to come fetch us home - 15 miles is too much of a hike on a 20 degree snowy night for two banged up survivors of a major wreck, especially since hubby can barely walk across the driveway these days. <br />
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I spent a chunk of today dealing with the aftermath. First we went to the yard where the truck was towed to retrieve all our stuff, then treated ourselves to breakfast at the Phoenicia diner. Then we filled the prescriptions for the weeks worth of pain meds and went home. I spent quite a while on the phone with my insurance company - they were great! We didn't have collision on the 10 year old truck, so that was a total loss, however all our medical bills and the cost of repair or replacement of the other vehicle will be covered. <br />
<br />
<br />
Another thing to be grateful for - since I made him sign that slip of paper W has been good - no drinking. I know he still thinks about it, and as his strength improves it will get harder to resist temptation, so the time of trial is really still ahead. However, at least for the moment, he is keeping his word.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-68822315439357422542010-11-30T18:04:00.000-05:002010-11-30T18:04:17.777-05:00shattered againAfter all his promises, and my agreeing to give him this last chance he did it again. He said he wanted to go shoot some pool and have a cranberry & ginger ale, so since he has been good I gave him $5 and drove him to the local place for an hour of conversation and a friendly game or three. When I arrived to pick him up, there on the bar in front of him was a very tall glass with about a half inch of beer left in it. The barmaid had no way of knowing he was supposed to be permanently on the wagon, so I wished her and the other folks a Happy Thanksgiving and waited till we got to the car.<br />
<br />
I asked why and he said he'd just wanted a taste and had only had a little. BS! If he had asked for 'just a taste' it would have come in a short glass - why waste a quart glass for a sip? I confronted him about the return to lies and shattered trust. I blasted him for doing it to me <u><i><b>AGAIN</b></i></u> - why should I expect him to keep his word this time? In the past 5 years I've given him so many opportunities to do the right thing, and in the last two I've given him entirely too many 'last chances'. I hate to give up after 30 years, but why should I keep trying if I'm the only one trying? He begged for one last chance.<br />
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I typed up an agreement, stating that if he breaks his promise and drinks again he will immediately grant me an uncontested divorce. He read and signed two copies - one to keep in his wallet, one I put in an envelope and put away. I don't want his pension - I'll settle for survivor benefits. If he breaks his vow and we divorce, chances are I'll collect them all too soon, since he has never had to take care of himself for more than a few months at a time in his entire life. I've told him repeatedly that if he wants to kill himself with alcohol or anything else that he will have to do it someplace else. Like Etta Place, I don't intend to watch it happen - I'll skip that part. <br />
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A couple of betrayals back I had made a sign "Once an alcoholic Always an alcoholic" - I even showed it to him a few days ago to show how close it had come then. It is now posted on the door. Maybe I'm just a soft sentimental fool for even bothering to try again, but if he fucks up this time he can pack his meds and a few changes of clothes and come back for the rest when he finds a place to stay - I will not go through this again. Never, no nevermore, never again.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-51344632882740035502010-11-25T17:51:00.000-05:002010-11-25T17:51:45.756-05:00Happy Thanksgiving.... well sorta anywayMy old range oven decided to crap out just in time for Turkey day....<br />
Happily I think it will be a relatively easy fix - a new thermostat most likely - but the placard with the model info fell off during the move so I have to call the plumber in to look at it, order the replacement and install it - more $$$ I'd have preferred not to spend. Oh well.<br />
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I had the range originally meant for the residence sitting in the garage, and went through all the *&^%$ effort to unhook the old and drag it out side and bring in the new....only to find it was factory set for natural gas, and I can't decipher the instructions to switch it over to LP. <sigh><br />
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So my old fave now sits outside covered in a tarp, awaiting the ministrations of the plumber while the new Tappan sits in the middle of the kitchen, useless. I'll have to drag it back to the garage once the weather clears. I <b><i>will</i></b> have the plumber do the switcheroo on the gas type while he is at it so we can install it in the room T will be moving into - he deserves a good stove, and I like my old Magic Chef goldurnit!<br />
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Anyway, for Tday W had an English muffin and I had leftover Zatarain's Dirty Rice warmed in the nuker - and I'm going to bed early. Didn't get a lot of sleep last night due to a phone call about 11:30. It was just a fishing expedition for room prices which came to nothing, but it woke me up about an hour after I had fallen asleep. I wound up awake until 3 after that, partly due to stress, partly to W being an idiot. First he wouldn't keep his hands to himself while I was trying to get back sleep - I compared him to Boris the Spider - and then he wouldn't STFU. Too many sleepless nights are brought about by him getting diarrhea of the mouth at the darkest part of the night :-(<br />
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I'm so tired!slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-53874530741725545412010-11-20T17:32:00.000-05:002010-11-20T17:32:41.654-05:00So far, so good....so farIt turns out he hadn't gone off looking for a way to turn that $20 in his pocket into beer after all. He was walking around outside thinking about what I had said - in particular about the ultimatum I had given him; get straight or get out. He came in and asked if it was OK to be inside. I said yes, as long as he hasn't been drinking - he hadn't. He still doesn't quite grasp how totally appalled I was by this latest betrayal, and how it left me sick inside - I don't want him touching me, even non-sexually, because it makes me feel ill with regret for the loss of trust. However, he is giving me room to recover, and I am giving him time to prove himself. As long as he continues to behave I will give him all the help and support I can, but I made it very clear - this is the <u><i><b>LAST</b></i></u> last chance. One beer and it's all over - no more please, no more I'm sorry, no more it won't happen again. <br />
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So now I am attempting to rearrange everything (again!) to allow a path to remove the old stove and bring in the new one from the garage. We had bought the new one for the upstairs residence that never got built, like the cabinets. The old stove is the one we had bought over ten years ago in the old house. It still works for the most part, but I had trouble with the oven the other day. When set for under 350 degrees it doesn't seem to work properly, and with Thanksgiving and then baking season coming I need a reliable oven that can function at any temperature I need. So out with the old, in with the new. Chances are the oven is an easy fix - the thermostat replaced or some such - but I just don't have time to fiddle with it right now. The old one will get a good steam cleaning and get stored in the garage until I have time to tinker with it. If it can be fixed I'll put it in one of the two efficiencies and the antique currently in that room will go up for grabs in Freecycle. <br />
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In the meantime all the stuff I had taken out of the kitchen so I could re-do the floor is all over the front room in the way of progress, so I have to lug a chunk of it back into the kitchen to make a path. After the big switcheroo I get to lug it all back into the front so I can finally do the floor <sigh><br />
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Oh well, at least I see some progress - the floor is a lot cleaner, and I'm starting to get an idea of how to rearrange all the cabinets, the freezer, the china hutch etc to make a functional kitchen. Thank goodness I have all winter - I may need it!slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-2717436015579071192010-11-17T16:34:00.000-05:002010-11-17T16:34:12.704-05:00Ducky, just duckyThe past two days have largely revolved around D and the funeral for her ex, and her re-connecting with the family, so pretty much nothing got done. W is still refusing to sit, so I had to wash the rugs again yesterday, and still wakes me up with stupid stuff in the middle of the night, so I'm more sleep deprived than ever. What's worse is that now that he is out of the hospital and starting to feel better he is back to his old tricks. Apparently, in the guise of comforting T, he went down to visit, but his real purpose was to try to score some beer. T refused, knowing the new rule is zero tolerance. He tried it twice, once with a witness present, so despite him trying to tell me (with the sad puppy eyes) that it's too bad I believe T rather than him, I have corroboration. Not to mention this has been his pattern for the past three years.<br />
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After this latest hospitalization I told him, as soon as he was lucid enough to understand me, that I refuse to go through this again. If he wants to kill himself he had better find someplace else to do it. I still have the number of not one but two lawyers, and if I see that nothing has changed, and he is going back to the old pattern of drinking behind my back every chance he gets, lying to my face about it (and everything else) I will have no choice but to file for divorce and bankruptcy. This has happened too many times, and no matter how much love there has been in the past thirty years I need to save myself - I refuse to go down with him! He is a classic alcoholic, with many of the markers for a sociopath as well. Lies without compunction, blames everyone else for his problems and refuses to grow up and take responsibility for his actions. I think after all this time supporting him, protecting him from the consequences of his stupidity and taking him back "for love" it is time I finally did what I should have done before he had the stroke - force him to face what he is and either change or take a hike.<br />
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For almost two years before the stroke he was on a constant buzz, going through a bottle of tequila a day, and putting me through hell. If I argued with him and begged him to stop and grow up he threatened to walk. I should have let him then. Now that his health has deteriorated so much I'm chewed up with guilt at turning him out, and he knows that. Of course he swears he isn't trying to guilt me, but I'm not sure he knows the difference between his delusions and reality anymore.<br />
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Now he has taken off - probably to hitch to a bar with that $20 in his pocket, and will probably show up sometime late in the evening begging to sleep on the floor or the recliner, then if I allow it he'll take that advantage as leverage to get into the bed about 3AM. Not this time. There is a foldaway bed in the utility room, which is much warmer than the garage - he can sleep there if he comes back drunk. I've had it.<br />
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I just have to wonder what flaw in my character made me put up with his shit for so long?slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-6307608965956411382010-11-15T11:09:00.000-05:002010-11-15T11:09:13.383-05:00The business, as usualWell, they can't say I didn't warn them. For that matter W can't say I didn't warn <i><b>him! </b></i>I got a call from the ward about 10:30AM, and the nurse said that since W had been rather out of it when brought in they were not sure what was 'normal' for him. I must have sighed, knowing what that meant.<br />
<br />
'Well, when he is all there he is witty, astute, a great conversationalist with a dry sense of humor, and probably very cranky because he <u><i>hates</i></u> being in the hospital. Sounds like he's feeling better, eh?'<br />
The guy at the other end gave a sound that was half laugh and half sigh of relief because clearly I understood the situation. I went on;<br />
'I understood that the staff wanted to keep him here until Monday so the weekday doctors could check him over. I take it you want to cut him loose today?'<br />
'Well, he certainly wants to go home today.'<br />
<br />
That was a clear admission of defeat - W had bullied or given enough grief to someone that they just didn't want to deal with him any longer than absolutely necessary. I don't blame them - BTDT. Besides, by now it was pretty obvious that he was on the mend - the beer had been the problem, and the old yucky liquid med was the answer.<br />
'No rush - after lunch is fine' he said, trying to be nice, but not realizing that with the 2 hours it takes to get there, even if I left right then I'd only get there just about lunch time. <br />
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OK, so I had just started thinking breakfast, having let myself sleep in, went for the papers at 9 and hadn't read them yet. I made a hearty brunch - eggs and ham - and settled down to read the papers. Then I got dressed and was on the road by noon. I was more than a little concerned about his attitude when I finally arrived - last time he started griping right off to the tune of 'what took you so long'. However, this time, in an effort to placate him, they had told him I was coming, and about what time, and he was magnanimous in his victory, allowing them to shampoo and bathe him without too much fuss. For that I was grateful - when he is depressed one of the first things to go by the wayside are little amenities like regular showers. His last was almost two months ago. I can remind, and show by example, but while you can lead a man to water...<br />
<br />
It took about 10 minutes to get him dressed - first he tried to put his foot into the sleeve of the long-john shirt, then was going to put his briefs on over the hospital jammy bottoms, but eventually he was sorted out. I even dragged a comb through his still damp hair before he could clamp his trusty denim hat on it and ensure it would dry kinked and snarled. They delivered paperwork to sign him over to me, and a big bag of the liquid med to take home. From now on he takes both the pill and liquid version.<br />
<br />
Since I had brought his personal wheelchair, getting him back to the car was easy. The rest stop visit he requested not so much. Unfortunately I didn't see the handicapped/family restroom door until after he had disappeared into the depths of the regular men's room. I did my own thing and took up station outside the door and waited. And waited. And waited. Finally I asked a gentleman leaving if there was an older bearded man in denim who seemed to be having difficulties. He looked startled but said yes, but there was someone helping him - he thought they were together. I said no, he's with me. He said I could go on in if I wanted - the two were the only ones left. I thanked him and went to the end of the access hall.<br />
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It turns out one of the workers at the rest stop had either been asked for help or had seen his difficulties and offered assistance. By the slightly wild-eyed look on the kids face (he couldn't have been much over 18) he was close to panic, afraid of doing something wrong and getting himself sued. I told him I'd take care of this and gave him a big smile and thanks, and once W had gotten to me the kid's face was a picture of relief. He had been trying to put his arm into the wrong arm of the jacket - I'm almost afraid to think of what stuff might have fallen out of the pockets in there, but since the worst would be a bit of money or a lighter I decided not to ask to inspect the premises - just cut my losses and got him out to the car. <br />
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We made it home without incident, and much to my surprise D was already there. Apparently her fiancee had shown uncommon foresight and suggested she come back Sunday to give herself time to get her head together and get some sleep, rather than taking the bus straight to the viewing and being totally wiped from the trip. After I put together a quick supper and got us both fed he began dozing, so I told him to go ahead add sleep, but I was going next door to give D a chance to vent, cry or reminisce. He was OK with that. D did a little of all three and an hour later felt enough better that I was able to excuse myself and head back to bed myself.<br />
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Of course just because he was sufficiently better to come home didn't mean he was together enough to be left unattended. One full cup of milk spilled all over the floor and everything on it in from to his nightstand (a perpetual problem area) and at 2AM I was awakened by him thrashing his way to the bathroom and proceeding to pee on the floor. I yelled at him to open his eyes and turn on the light. He muttered 'I'm OK' - I said 'No, I can hear it hitting the tiles - nothing is going in the toilet'. He ignored me, as usual. <sigh> I had just cleaned that bathroom floor (again) and put down the freshly washed rugs (again). I just hope this liquid med works quickly enough that the rugs survive daily washing until he can think clearly enough to sit rather than stand.<br />
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The final analysis is that his options now amount to drink his beer, get divorced and die much earlier than necessary, or quit drinking, live as long as possible and continue to bust T's chops and make my life interesting a while longer. He has accepted the new mandate (so far), and has promised to follow doctors orders. No more beer or alcohol of any kind - period. I have some small hope that as his brain gradually de-pickles he might even get back some of the motor skills he lost over this last binge. If so, great - if not, so be it.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-41382821151219712272010-11-13T21:37:00.001-05:002010-11-13T21:41:31.255-05:00Who needs sleep anyway?A week ago yesterday W was lucid, actually making plans with me for the winter projects. Then he took a fall in the bathroom, landing on the edge of the tub with his ribs, re-breaking or at least cracking one rib. I gave him a light supper, a pain pill along with his normal PM meds, and told him to rest. That's all you can do with ribs these days - they used to tape them, but not anymore for years. BTDT - so off to bed he went.<br />
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The next day I let him sleep in, only waking him to take his AM meds (breakfast Skittles he calls them). Later I finally woke him because 1) if he sleeps all day he will keep me awake all night and 2) I needed to go over the plan for Sunday. That was my first clue of the trouble brewing.<br />
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I explained simply and clearly that I had been invited to go on a bus trip to NYC with my friend G who drives tour buses - there were extra seats so she was told by the group to feel free to invite a couple friends. I was her first call and after a few seconds of deliberation (clean the floor or take a day off?) I accepted ;-) There was plenty of easy food and drink for him to take care of himself for one day.<br />
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The problem is 1) he somehow got the idea that he was also invited (NOT!), 2) he couldn't quite get it through his head that he was staying home, 3) I was only going as a guest, not a back-up driver, and 4) that he needed to rest, and so did I. Three hours later he<i><b> finally</b></i> was able to parrot back to me the gist of the plan, and seemed content to spend a quiet Sunday resting and watching TV, or sitting in the sun outside (it was scheduled to be a really nice day). OK, it had been unusually difficult for him to get that straight but I thought we were OK. Next morning I was up super early - we had to meet at her house just after 6 in order to get to the bus depot in time. He woke and glibly parroted the game plan for me, took his pills and was asleep again before I made it out the door.<br />
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Fast forward to my return home just after 9PM. He asks, with tragic puppy-dog eyes, where the car had been all day and was I OK? I hadn't run away and left him? ZERO recollection of our discussion - nil, nada, nothing! It was mind bending!<br />
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The next few days and nights were sheer torture. He slept most of the day except for occasionally calling for me in a panic thinking I had abandoned him 'again'. He could not hold a coherent conversation, or even a single coherent thought, and it was getting worse. Then he kept me awake most of the nights. A couple nights it was just constant bathroom trips, another night he got diarrhea of the mouth - couldn't STFU even when he tried, then last night he got stuck at the bathroom door. He became fascinated by the shoe rack hanging from the closet door and seemed to want to climb it. I had to physically manhandle him into the bathroom, where, as often happened, nothing happened - another false alarm. :-(<br />
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The bathroom and my head were in about the same state of disarray by this morning, and I called the VA ER for advice. After chatting with an RN telling her what I had been observing, then answering a bunch of her questions it was determined he needed to be seen ASAP. The possibility was there that he had also hit his had in that fall, or suffered a TIA or another stroke Friday night, which theories could only be confirmed or discarded with tests. She was inclined to blame interaction between his meds and his beer, but better safe than sorry. I confirmed that making the trip would not be a problem - I had called to be sure my concerns were justified, she concurred, and she called ahead to let them know we were on our way.<br />
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Much to my surprise and relief he gave no argument, willingly got dressed in the sweats I provided for a comfortable ride (2 hours each way) and off we went. He dozed part of the time, muttered to himself, or tried to engage me in conversation, but between the road noise and his fuzzy thinking that fell apart quickly.<br />
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The consensus was that the efficacy of the new med they had started him on to replace a nasty liquid one he had hated was being wiped out by his beer drinking. The drinking, however light, wasn't doing his brain any favors and was wreaking still more havoc on his poor abused liver. He had already begun to accept that he needed to stop again...'but not just yet'. Now the choice is gone. He either stops all alcohol completely and forever, or lose his brain AND liver. Further, as a necessary evil, he is back on the yucky liquid until the nasties are cleared out of his blood and he can think again. He was good about that too - a sure sign of how far his faculties have been eroded. Once he starts feeling better, I warned the staff, he will begin to get <b><i>very</i></b> cranky - he <i><u>hates</u></i> being in the hospital! The speed with which the mental dysfunction had set in apparently was more a function of his injured body trying to heal and being incapable of simultaneously coping with that and the warfare between the meds and beer than due to any sudden surge in his intake - which there hadn't been. <br />
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So now we wait. He will be spending at least two nights in hospital, since he needs time under observation. Also, the 'real' staff is off on weekends, and they want to have him seen properly on Monday. That means I get two nights of uninterrupted sleep! No being wakened by crashes as he thrashes his way from bed to bathroom a dozen times, no having the blankets ripped off as he rolls over, no getting my mind abraded by mindless babble for hours. Just peace and quiet in the knowledge that he is safe... and there are folks who are being paid to see to it that he makes those dozen trips back and forth to the john safely, or, more likely, he'll be forced to use the portable plastic urinal unless he feels a BM coming on. Knowing him as well as I do I feel sorry for them, but that is why they get paid, rather than doing it for love. Nice folks on this ward - I hope they survive...<br />
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Sleep - what a concept. I think I'll give it a try real soon....slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-47014160323443814662010-11-12T18:54:00.001-05:002010-11-12T19:02:27.035-05:00New Day, New S#!^OK, W appears unable or unwilling to admit that both his failing vision and failing health make standing to urinate impractical. Just as the aim and distance possible is better with a rifle and sight, rather than a handgun and blindfold, his equipment is no longer up to the challenge of hitting the target with any degree of accuracy - a fact not helped by the ever increasing tremors in his hands :-(<br />
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I have to wash the bathroom rugs three or four times a week because even after pointing out that his pointer isn't working, and him agreeing to sit, he persists in pissing me off by drenching the rugs and anything unfortunate enough to be under the sink or next to the toilet. I've had to remove just about everything from 'his' bathroom to avoid contamination and/or just plain nastiness. Some nights even the basin is not exempt from the shooting gallery. I know, it would be simple enough to remove the rugs, but with his lousy vision, plus his propensity for falling, wet tiles would be a sure recipe for disaster. At least with their rubber backing they keep him relatively safe. I may pick up a couple cheap spares so I can just pull the soiled ones out, do a quick mopping and slide the next set in place to cut down on laundry loads. Thank goodness we have a second bathroom so I am not constantly subjected to that urine stink.<br />
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This other bathroom is in the process of becoming my personal oasis - once I've massively re-worked it, anyway. Like everything else in the place it was put together over 60 years ago on a budget, and it shows. Decrepit cheap white-face board surround, riddled with scratches and gouges and leaking groutless corners. Borderline tolerable country-kitsch wallpaper. Baby blue sink and tub (we replaced the toilet two years ago with a white one, happily) and matching painted lower wallboard. If I have to I can live with the wallpaper for now, but I have picked out a replacement faux tile wallboard in almond & tan stone pattern to replace the old surround, and will paint over the blue wallboard with either almond or tan. That will reduce the blue to a tolerable level - just the two fixtures and the hints in the wallpaper. It will also stop the prior leakage problem from rotting the floors - the main reason we stopped using that tub and have been exclusively using the other tub. For two years this one has been a combination spare potty and walk-in closet as I dealt with other, more vital repairs and renovations. However, since I can do the work myself, and on the cheap, it is one of my planned winter projects, to come in for under $50.<br />
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Another big project is re-doing the kitchen, again, on the cheap. We had originally planned to build a second floor owners residence over the office/store and first two efficiencies. The money went to more important things and now we are stuck in the rooms we have. However, W had constructed most of the kitchen cabinets for the residence while we were still in our old place, and they have been in storage ever since. Before I start installing them in this cramped cheerless and virtually storage-less kitchen I have to do something about the floor. Ancient linoleum that has seen so much wear and abuse as to be barely recognizable. Even after steam-cleaning (I had picked up a little Eureka hand-held at a yard sale a couple years ago, still in its original sealed package - not bad for $7.50) the flooring is a mottled s#!^ brown with speckles of blue here and there. With no window, greige wallpaper and only a double fluorescent overhead it is a dreary little room.<br />
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So I went to the local bargain outlet and picked up almond peel & stick floor tiles and the spreadable cement to make sure it stays stuck (the newer tiles glue stinks). Once I get everything out and can scrub the old floor down to the cleanest it can get I'll lay the tiles and then, after they have time to set and settle I'll start bringing in the cabinets. I already dismantled and removed the over-sized table - one of the old metal tube-framed jobs with a Formica top - white with gold flecks. I have a small rolling open-sided cabinet I was using for computer paper and other odd storage that is about to get a new life as a rolling kitchen island. We have a collection of odd ceramic tiles amassed over many years (along with entirely too much other stuff), so I plan to use some of the extra tile cement to put a better top on this and also redo the existing counter by the sink (also white/gold flecked mica). Since most of the stuff going into the kitchen I already owned all the renovation will cost is sweat equity and a bit less than $90 for the floor tiles, glue and spreader tool. I don't know yet what I will wind up doing about the hideous wallpaper, but that is a problem for another day - I'll cope for now.<br />
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Now for the real drama - or melodrama - of the day.<br />
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Yesterday morning I drove D to NJ to spend Thanksgiving with her fiance and his family. Last night I found out her ex, S - the one who tossed her out after 14 years in favor of shacking up with his recently dead brother's widow - has just died. That makes three of the five brothers gone in three years, all under 60, mostly due to excessive drinking, diabetes and poor eating habits. One of the remaining two, T, lives here, a rescue thanks to D who adores him like a brother and looked after him for years. He has cancer, but mostly it is inactive at the moment, and he is reasonably mobile and able to look after himself given proper surroundings.<br />
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His brother S (the one who just died) had installed him in a dilapidated health-hazard of a trailer, was taking his SSD check for rent, barely giving him enough food, and never taking him to his doctor appointments. Nice guy all around. Well, his new girlfriend and eventually wife as of June, is a registered nurse who allowed her first hubby to drink himself to death, and despite his raging diabetes she did the same with S, her new husband. Nice gal - serial black widow, but in true mountain style, kept it in the family. She now has complete control over both brothers pensions, and two sets of kids have just lost their inheritance - they'll never see a dime out of it - she spends every dime she gets on herself. I feel sorry for the next guy she sets her hooks into when she starts running low again. Like I said, Peyton Place, mountain style.<br />
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I had to be the one to tell D - I knew she would be shaken by the suddenness - we had just seen him a few days ago, looking more like a beer keg on legs than the vigorous man she first knew almost 20 years ago. Mostly, as I expected, she was sad for the kids, now all in the clutches of that gold-digging harpy. She plans to come back for the funeral for their sake, but I hope I don't get roped into going. I will drive the two of them if they need it, but I don't like funerals at the best of times, I never knew him and never wanted to, and I sure don't want to be in a position of biting my tongue around that woman. What a lousy situation.<br />
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Oh well, another day tomorrow - hopefully W will not keep me awake half the night like he did last night, and I'll be able to get some work done.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-8773996751628361312010-11-10T16:44:00.000-05:002010-11-10T16:44:40.769-05:00Same Day, Different S#!^I had him settled down with Shrek 2, and, as expected, he fell asleep. When it ended I popped in a Byrds disc - part 1 of a 2 disc set I got him over a year ago, and which he watches about once every two months. I figured it was a good choice because whether he is awake or asleep he lives and breathes Clarence White. He woke up about 15 minutes into it and asked me, with a straight face where I had gotten it - he liked it - but he didn't remember having seen it before. He fell asleep. He woke up, unable to deal with the volume control - he must have leaned on it in his sleep and it was at about the level of a nuclear explosion, so I turned it down and put in the second disc.<br />
He told me, again, how much he loves me. He watched for about two minutes and fell asleep again.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0tag:blogger.com,1999:blog-5923296248006941229.post-90636185784415667032010-11-10T12:44:00.000-05:002010-11-10T12:44:43.988-05:00Day 1 of blog but year 30 of life with WHe is getting worse. Friday he actually seemed to understand basics and I was beginning to hope he was improving. Then he took another of his falls, re-cracking his rib on the side of the tub. By Saturday he was having trouble understanding and maintaining understanding of simple things. It took 4 hours of repetition before he could repeat back to me the game plan for Sunday. Sunday morning he parroted it again, but when I came home Sunday evening he had abandoned-puppy eyes, hadn't eaten all day and clearly had no recollection of our discussion about my day in the city with my friend. This was the first full day away from him in almost a year, and he was like a dog - no comprehension that I would be back.<br />
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Today I tried to explain to him that tomorrow I would be driving D back to J's house in NJ, and invited him to come along for the ride. I figured it would be a nice change of scenery for him and it would allow me to keep an eye on him, and he wouldn't be 'abandoned' again so soon. There is a warehouse outlet near J's house where I might be able to pick up some cheap stick-on tiles to redo the kitchen floor, and I'll get the gas money back from D so it looked like a win-win situation. The problem is he couldn't register the full story. First he got dressed, eager as a puppy to go for a ride. I explained again that the trip is tomorrow. Then he wanted to know if D was coming along for the ride. I explained again that taking D back to J was the primary reason for the ride. We went around and around for well over an hour, with him convinced we were going for a joyride today.<br />
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I finally became so frustrated I threatened to take him for a ride - right to the VA psych ward - if he persisted in this. Oddly that seemed to shake loose some of the confusion and a little later he was able to parrot back tomorrows itinerary. I don't know if it will stick, but I am determined to take him along tomorrow no matter what, because clearly he cannot be trusted to look after himself alone anymore. He eats when I put food in front of him - it has to be soft these days, as his gums are too tender for anything chewy, and the VA won't replace his dentures, because the teeth problem is not service related. He spends much of his time sleeping, which is good for now, as it allows his body to heal. He takes his meds when I present them to him, and generally gets them all into him, though I still have to check for any that might have fallen out the side as he pours the little cup in his mouth.Today I found one - some days it's three or more.<br />
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He is going to be 60 in less than a month, yet is already in worse shape mentally than his father was just before he died. Physically they are almost on par - he can barely walk - his dad had lost a foot to diabetes; he has trouble seeing without the glasses he refuses to wear - his dad was blind from diabetes; he has little quality of life as he can no longer do any of the things he once enjoyed - ditto for dad. So sad considering he isn't all that old.<br />
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I am 56, and feeling the beginnings of the arthritis that plagues my family, but I keep active mentally and physically, and don't give in. The stress of being sole care-giver to a spouse who seems to be in the beginnings of premature dementia, however, is telling on my stamina. I need Valerian or some other herbal tea almost every night to get enough sleep to cope. Post menopause sleeplessness, night sweats and mood swings don't help either. Coping with trying to run my little motel single-handed, while keeping him fed, cared for, to his doctor appointments and entertained while keeping him from hurting himself is as much of a full time job as anyone could ask for, but one barely keeps the roof over our heads and the other costs me daily.<br />
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So for now he seems to understand that we are staying here today, but will be going to NJ tomorrow, and he has gotten undressed and back into bed, watching Shrek 2 on the DVD.slywlfhttp://www.blogger.com/profile/00330713943930561761noreply@blogger.com0