Sunday September 1 2013
It's hard to believe it's been 100 days since I started this record. Sometimes I ask myself ... since everything happened so fast ... would DH not be in the condition he's in if we had not started the whole hospice process? Or would he be the same, only I'd be more alone, more stressed, and totally bewildered?
Today (Sunday) instead of the usual "family" dinner, we went out. DSS and his girlfriend had a rare chance to go out without any kids aong, so decided we'd all go to a restaurant. Once before I turned down the chance to go out - I thought it might be too hard on DH. But, sDSS seemed to really like the idea of taking his dad out, so we tried it.
It was a mixed belessing to be sure. DSS now has a much clearer picture of the struggle I go through every time I have to take DH somewhere. It was hard with his strength and TGF and I to back up .. and I most often have to do it alone.
It was a struggle for DH as well. I believe he very much enjoyed his meal - he ate much better than normal (although he has been doing a little better recently). But he was clearly tired; he was slumped over in his wheelchair, and it took him way longer to eat a small amount than the ret of us took. I cut his meat up for him, but he continued to struggle with a knife anyway.
When we got home, he was SO ready to go to bed. I thought he'd sleep better all night; and maybe he would have if not for a strong (loud!) thunderstorm around 3 AM that lasted around an hour and a half. Since it woke me up, I went in to check on him - he was confused again; but I think he finally went back to sleep.
I don't know if this is something worth trying again or not; or at least, not often. He did enjoy the meal. But the process of getting him somewhere is exhausting for him and for whoever is having to physically help him. I'm not sure it's possible for him to get any weaker than he already is; but if he does, I really don't know how I'll be able to handle it.
A facility is clearly not an option. I may not do the best job. But a nurse working 12 hour shifts with multiple patients to deal with, plus all their paperwork, couldn't necessarily do a better one. And it's near impossible to find a facility (the doctors tried - I didn't!) that will take him on with his multiple health issues, medicines, and the dialysis. At best, they would forcefully take him (by stretcher in transport van) to hemodialysis instead of continuing peritoneal. I believe he would be not only confused and disoriented, he'd be depressed and miserable.
Nope. Not gonna happen.
So, we ust carry on as best we can, and wait and see what the next 100 days holds.
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