By Samra Jones Bufkins
Not long ago I wrote a post about “getting real.” Since then it’s gotten better, but not much.
The other morning, right before his physical therapist arrived, he came out of the guest bathroom. I didn’t see him leave, but he circled through my office and the kitchen, and when I saw him looking puzzled in the living room, he was shoeless, wearing a wool turtleneck dress. It was upside down, with his right leg in one of the sleeves, and the other leg coming out of the neck. He had pulled the rest of it up around his waist, and was struggling to make it stay up. Of course, he wasn’t wearing underwear.
He’s done something like this before, which I described in my January 30 post.
During the night he often gets up, goes into our en suite master bath, and does a similar thing–or worse. At 4:15 this morning I found him rummaging in the closet, about to put on a wool pair of dress slacks–sans underwear. His shirt and sweater (he won’t change into pajamas, so I let him sleep in his clothes) were dumped on the floor next to the toilet–wet–and his pants were nowhere to be found. I still haven’t found the Depends he wore to bed.
I got him into underwear, a pair of sweatpants and a flannel shirt, and we went back to bed. But I digress….
After the January nightmare
The first few days after he returned home from a month in the hospital (pneumonia) and rehab, I felt the situation was hopeless, but it has gradually gotten better, thanks to the familiarity of home and an adjustment to his meds. His incontinence is back to intermittent, although a bit more frequent than before the hospitalization
But there have been moments.
He has flown into a rage more times than I’d like to admit, usually late at night and when our friend, Ted (who is here most days) has left. It can be over something as small as my wanting him to change for bed, for suggesting he does not need to wear 3 leather belts over sweatpants, or turning off lights.
He also often demands I leave. He hasn’t remembered we’re married for at least 2 years. These incidents usually happen at night, or when I want him to do something he doesn’t want to do.
He can be verbally and physically vicious, and I have bruises to prove it. He never hits, but grabs my arms and tries to push or pull me out of whatever room we’re in, yelling “You get out of here!”
Usually, after one of these outbursts, he returns to his usual sweet self, sometimes in seconds. I’ve found that explaining why I want him to do (or not do) something helps.
There’s been an adjustment in one of his meds, and I’m waiting to see if that works. Any hospital stay, any illness, usually causes the Alzheimer’s patient to decline. I’m always on guard.
Another thing to be continually stressed out about.
Aggression , agitation and angry outbursts are common in dementia patients. What we as caregivers need to remember is that we’re most likely not going to change them. Many drugs given to minimize aggression, etc., have their own side effects, interact with other drugs, and may not work.
A couple of weeks ago I attended a caregiver conference put on by the Dallas chapter of the Alzheimer’s Association. Bill enjoyed a day of activities with OT graduate students from TWU and old friends from Stepping Stones while I attended sessions on behaviors (and how to deal with them), nutrition, medications and supplements, and communications. I learned a lot, which I’ll share soon in another blog post.
Monday night we attended a UNT basketball game (they’re in the College Basketball Invitational post-season tourney). We had to take the truck, because the Volvo is on its deathbed. Ted always gets into the back seat, but Bill wanted to get in first, and there was a brief verbal altercation because Bill doesn’t understand many concepts now. However, once we got to the game he had a good time. The band, the cheerleaders, the dancers, and the players energized him. He cheered when the home team made a basket (UNT won, 96–67), clapped when the band played, and exclaimed “Wow!” at the cheerleaders’ acrobatics.
He also only went to the restroom once, when it’s about every 20 minutes at home (yes, we’ve ruled out a UTI). I’m beginning to think he does it at home because he’s bored, so I’ll have to increase the activities at home. He’s very social and loves when people come over. Unfortunately, few do. That means I’ll be busier.
It’s exhausting to go without sleep, wash bedding at 5 am, research what to do next, keep him engaged with productive activities, manage his meds and behaviours, deal with things going missing without explanation, finding items rearranged, and more, while ensuring nutritions meals and snacks, managing the house, yard, cars, finances, and worrying about what the future will bring. But that’s what family caregivers do.