Transition ahead?
I've avoided writing anything for a couple of weeks because I simply didn't know what to write and have been more than a little overwhelmed with what is going on. Lauren's sister came for a few days to give me a holiday. She has done this before a couple of times and it is so appreciated. I always get private duty aides for every night she is with Lauren so she doesn't have to put him to bed and get him up in the morning. A couple of days before I was to return she called me and said she couldn't get Lauren out of bed. He simply couldn't stand at all. She called 911 and he was placed in the hospital with a UTI and a lumbar compression fracture. This is a new compression fracture but there was no event that was known to cause it. I assume he took a harder than normal landing on the stool since one of the aides wasn't as familiar with him as the other one. The UTI was probably causing him to be less balanced than usual. I don't blame anyone for this--it just happened.
After several days he seemed to do better and I was able to transfer him to and from the wheelchair so we came home. Next morning I can't budge him an inch. I had Home Health PT who helped me get him up that day but the next day was the same and even she had trouble moving him. His tone had kicked up so severely that he wasn't even able to bend at the waist. It was like the tone has now affected his torso as well as his arm and leg.
Long story short, he is now back in the inpatient Rehab unit he was in after his stroke. He's been there a week and has this coming week approved by insurance. He has not made much progress at all. He won't even lean forward without much coercion or actual force. He requires two people giving maximum assist to transfer anywhere. He won't stay up in his chair any length of time. Spends as much time in bed as they will allow and constantly hassles them to put him back in bed when they make him stay up. The unit uses a scoring system to determine his level of independence. He is the same score he had when he entered the unit immediately after the stroke and was totally dependent with everything. It's all very disheartening. Since he's not making adequate improvement, it is likely they will not approve a longer stay in Rehab.
I'm looking at skilled nursing homes to move him to. There's no way I can care for him with the level of assistance he needs and his unwillingness to push through his pain for mobility. He's being medicated for pain as much as possible without knocking him out. He's getting increased meds for the tone. Lauren has never really engaged in the process of recovery. He generally does what he is asked to do if it doesn't require too much effort but there is no carry over to learn a task and repeat it on his own after time. Two years post stroke I am still giving him the same cues for the same tasks every day.
I know he has a compression fracture and I know it will take several months to heal. What I fear is that this is the end of him being at home. If he won't work to recover, the result is going to be that I can't manage him at home. He's 64 years old and completely aware of his surroundings. I can wrap my brain around a short stay in a skilled unit even though I hate that. But I'm not ready to wrap my brain around a nursing home stay from here on out. It almost makes me sick at my stomach to think of it. It would be different if he wasn't so aware. It isn't that I believe he will have lack of care because I will make sure it is a highly rated nursing home. It is that he will be living with people who are 15-20 years older than him who are generally much more mentally impaired. Bingo and singing songs from the 40's just won't interest him. I am heart-sick.
Donna
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