It seems like a good idea to spell out to you exactly how Heather is functioning in day-to-day life. I see so many Alzheimer’s and dementia webpages and guides that talk about coping mechanisms and tools that caregivers can use to help their people. Things like simple calendars with big dates, phones with just numbers and no apps , using puzzles and children’s games to keep them entertained, not challenging them when they make a statement that’s not accurate, and not pressing them with questions, and so on. I just shake my head when I see this stuff because none of it is relevant to our situation. Most dementia resources seem to focus on the long slow versions. This is different… Heather’s decline is rapid and aggressive. I think of it as staggeringly fast, and it’s hard to keep up with the pace of change. Here’s a list some of the issues we’re dealing with to give you a better picture.
Speech and Language:
Heather has lost almost all of her language ability. She doesn’t speak other than to say yes or no once in a while, even though it doesn’t necessarily mean yes or no. She might vocalize with a “woohoo!” when I mention ice cream or another treat. Sometimes she’ll repeat a word back but I’m not sure if she understands what she’s saying. If you really focus and work with her she’ll struggle to say something like “I love you”, but the frustration is evident so I don’t bother. She hasn’t said my name in a very long time.
Bathroom:
She’s no longer able to shower independently. She doesn’t know to pick up a bar of soap and she doesn’t know how to wash her hair. One of the benefits of having her at home is that I hop in the shower with her and I shampoo her hair and help her wash her body. We do this every two or three days. At some point, it might have to happen every day, depending on elimination habits. I can’t imagine this quality of care in a facility.
At home she will go to the toilet independently, but she often neglects to wipe. My radar is up most times when she goes to the bathroom and if I clue in that she’s having a bowel movement I’ll try to intervene and get her to use the bidet. If we’re out of the house it’s a whole other matter and I have to really pay attention to her body language to anticipate the urge for elimination. If she suddenly gets up and starts walking around, that means she needs to use a toilet. There have been three instances now where I didn’t figure that out and she lost control of her bladder. This is becoming a big challenge because I also can’t force her to use the toilet before we leave the house. She just looks at me as if I’m nuts… I have no clue if she understands it when I say you have to go to the toilet before we leave. I just get a kind of blank stare… so this is an ongoing adjustment and it’s going to be more pronounced with time. I do have some absorbent pull up underwear on a shelf, ready to go when the time comes. Meanwhile, it’s just easier to stay at home versus going out to stores or restaurants, or even for walks. I’ve had to communicate this to friends who occasionally offer to spend time with her, as they remember Heather from a month or two ago and the changes are so rapid that there’s a whole new territory now. This is all part of “the Amazing Shrinking World” effect of dementia caregiving.
The demands of caregiving can limit a caregiver’s ability to take care of themselves. Family caregivers of people with Alzheimer’s and related dementias are at greater risk for anxiety, depression, and poorer quality of life than caregivers of people with other conditions. (ref)
Morning and night routines:
In the evening around eight or 9 o’clock she usually gives an indication that she’s ready for bed. That might involve pacing around the house or going up and down the stairs, but the signals are there. I will go upstairs with her and help her change out of her clothing and into her pajamas. She usually starts to make sounds similar to crying… I would call it ‘blubbering’ – I can’t think of a better word for it. It could be mistaken for laughing, but it’s not because there are eventually tears in the corners of her eyes or even on her cheeks. I don’t know why… I don’t know if she’s frustrated or confused or combination of the two. However, I persevere and eventually get her in her pyjamas. Then I take her to the bathroom and I get her toothbrush ready and tell her to brush her teeth, followed by showing her that she has to spit the toothpaste out in the sink, then I’ll put a cup of water in her hand to rinse, even though she just drinks it now versus rinsing and spitting. After we go to bed, she will often get up at some point before midnight, and I know that she’s seeking a toilet. I have to jump out of bed and with my hands on her shoulders, direct her to the toilet to prevent her sitting down on a chair or other surface, in a sleepwalking state, and relieving herself, which has happened a couple of times already. Mornings are the reverse of this, but without the blubbering and tears… but I still have to direct her every step of the way until she’s downstairs, ready for coffee and some cereal. I used to treasure an hour to myself in the evening and in the morning, but lately I’ve had to go up to bed with her early because otherwise she’ll get out of bed and come wandering around the house again. Same thing in the morning, she’s usually up shortly after I get dressed and I have to spring into action. I feel like I’m on duty from the minute my feet hit the floor until I close my eyes at night, and even after that.
Food:
She can no longer prepare food and unless it’s out on the counter it might as well not exist. She no longer opens the fridge or cupboards, and seems to not even be aware that there’s food available when it’s out of sight. She will eat any sweets that she sees until they’re gone so I have to hide food, including fruit. Just very recently she needs to have a fork or spook put in her hands or she will start eating with her fingers, no matter what it is. It’s like she doesn’t recognize utensils anymore. On occasion I have spoon fed her and she seemed content with it. That hit me like a ton of bricks because I remember feeding my 90 year old mother with dementia when she was in a local care facility.
Clothing:
She’s completely unable to manage any aspect of her own clothing and she gets confused when I force her to undress for bed or a shower.
Technology:
She’s unable to use her phone anymore. She used to enjoy scrolling TikTok or Facebook but seems to be unable to do any of that. A friend brought over a stack of magazines the other day, and she does flip through those daily, to my great surprise and joy. Once in a while I’ll be surprised that she has turned on the TV independently.
Art and other activities:
See Hetty’s section on Artful Fridays. Heather and I used to play cribbage every second night or so but that’s impossible and she can’t play even the very simplest card games. No puzzles, no reading, no knitting or crafts; nothing. She sits or paces or flips magazines. The only fun activity is watching TV. I’ll try to get her dancing in the kitchen from time to time but she’s starting to act stiff and wooden with that, even though she might laugh a bit at the absurdity of it all. We recently finished the whole Seinfeld series, and that’s actually made her laugh pretty hard. I think it was the slapstick comedy that she enjoyed. Now that we finished, I might just restart it from Season 1.