Wednesday, September 14, 2011

It's just about over

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.  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.
The doctors were very kind, but very clear - there is nothing further they can do but keep him pain free.  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.
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.  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.
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.
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.

Tuesday, September 13, 2011

This just keeps getting worse

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.  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.
In the meantime his health has been deteriorating precipitously.  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.  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.  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.
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.  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.  So that makes it easier for the doctors to discuss everything with me directly.  
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.  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.
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.  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.  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).
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  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.  
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.  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 ;-)
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.
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.
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?