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.
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.
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.
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. 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.
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.
The VA had been on the verge of considering whether Wayne is a good candidate for a liver transplant, 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.
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. 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.
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 endured by mentally incompetent patients either from other patients, through malice, or simply frustrated, overworked staff. I told her (the social worker) about my concerns, and I'm afraid I broke down in tears but she was very understanding, considerate of all the stress I've been through.
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). 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.
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.
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.
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.
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.