One of my duties when I arrive in the infirmary is to get Leo up, on the days the Hospice nurse does not come in. Because of his advanced Alzheimer’s he is eligible for hospice care, which is helpful for us. He has his own nurse, and a PCT comes in a couple of times a week for personal care.
First thing in the morning, Leo is often ‘clear’. His aphasia seems to be less, and he can answer questions, speaking clearly. He can on most mornings, walk back and forth from the bathroom with a little assistance, and in general, when like that his morning routine goes smoothly. When he does have trouble it is sometimes difficult to know actually why.
Yesterday morning when I woke him he seemed very confused and his aphasia was in full bloom so to speak, all he could speak was ‘nonsense’ syllables, and his mood was pensive. When I sat him up he cried out, and it took three times to get him to sit up in bed. I had him hang on to my left arm, and finally was able to get him in an upright position on the side of his bed. I sat down next to him, and just let him set for a short time to get orientated.
Then I tried to get him to stand up. When I did this he again cried out and bent over holding his knee. So I sat him back down and asked him if he was in pain, but all he would do is point to the floor. Now Leo can often understand what he is asked, even if he can’t verbalize what it is he wants to say. So I asked him if he was in pain, and his answer was not clear. So I brought up another question. If he was afraid of falling, and I got a positive answer by him vigorously shaking his head in the affirmative.
Sometimes Leo is deathly afraid of falling, since in the past he has had a few, and for some reason this anxiety is stronger on some days, than on others. Leo is a big man, not heavy, but big boned and strong, so when he is like this I try to talk him into walking with me, letting him know that I will be accompanying him, and that he will not fall. So after about five minutes he said that he would try, by simply trying to get up and walk. It was scary for him; he kept bending over, as if by getting closer to the floor the fall would be less.
Finally got him into the bathroom, and then had to talk him through the procedure of simply holding on to the safety rails that are next to the toilet. He did not understand what was wanted, so I got one of his hands, and then put in on the rail for him, he then understood, smiled in relief and things went smoothly from there.
Breakfast took a little longer than usual, since he could not this morning use his fork. He could eat his toast, but had to be fed his eggs, and as usual had to be given his drink. Some mornings he is more capable than others when taking breakfast, or for that matter any of his meals. As the morning progressed he seemed to get better, and his anxiety level seemed to lessen.
Later in the day as he was looking out one of the windows in the main room and trying to talk to me, he suddenly started crying, and talking about those poor people, at least that is one sentence he was able to get out. I stayed with him for awhile, and when he began to stop crying, I told him I had to go. He seemed better after that.
So Leo, like everyone else has good days, and bad ones, though overall he is more content than not, and can still laugh easily when he is having smooth sailing so to speak. He is still in there, and seems to understand, at least most of the time when spoken to; though some days seem foggier than others. He responds, listens, and does try to do what we ask him. He is above all else a gentle soul, always has been, and hopefully as his disease continues its progress, his gentleness will help his journey be less difficult.