This blog is about my parents and my caregiving role for two people with dementia. It was established that my mom has dementia, not Alzheimer's, although she is on Alzheimer's meds. She was born two months premature in a log cabin during the Great Depression, fed milk straight from a cow right at birth (has kidney failure likely caused by diuretics for hypertension but I wonder if the milk at such a young age harmed them), and has had encephalitis, congestive heart failure (CHF) and COPD. The last two are the biggest culprits.
My dad has vascular dementia from multiple tiny strokes over time. I am sharing their story to give people more impetus to take care of themselves. It is extremely important to exercise and eat properly. The effects of good diet and fitness are far reaching!
My parents are very sweet but extremely uncooperative. They are in denial and lack insight into their situation. So, everything that my daughter and I suggest is always a "No."
Driving. My mom is almost completely blind from macular degeneration. She knows she is not supposed to drive. She has said she won't. Yet, over Labor Day she took her older sister on a joy ride through town at 9:00 in the morning. Dad was in bed, so they slipped out. When I talked to her about it after my aunt went home, she said, "Oh, it was fine! It was night, and all the lights were on." I said, "Mom, it was broad daylight, a sunny day at 9:00 in the morning!" She looked rather puzzled and disturbed to hear that and promised she would never drive again.
Last summer, I was in the back seat of my parent's car while my dad was driving. Mom was in the front seat on the passenger side. We had just left a fast food joint, driving on a highway, when my dad told my mom to take the wheel while he took the wrapper off his burger. I sat there with my eyes bugged out, protesting, while mom said, "Don't worry, I can see the line on the road," speaking of the fog line at the shoulder. I can't believe my dad would do that. Last summer, I still wasn't yet getting forceful about driving, but after that I began my campaign to get them off the road.
This August, my mom had a doctor appointment 30 miles from their home that necessitated driving on a 4-lane expressway. I was dead set that dad would not drive her. Knowing how insistent he is that he can still drive, I arrived at their apartment two hours before they were to leave, even though he made it perfectly clear he was perfectly capable of making the drive and I was not invited. Why did I arrive two hours early? Because I knew it would take that long to wear him down with my presence and firm determination. I told him I'm going along and not in the back seat. I parked myself in a recliner, and stayed there. Finally, he said, as the time neared to leave, that he'd been up since 4:30 a.m. and was tired, maybe I should drive her and he'd stay home. It was 2:00 p.m. at this point. Oh, sleep deprived with dementia! That is just GREAT. Even though he knows we have to drive through major road construction, the only thing that made him give it up was my unrelenting interference. If I hadn't been there, he'd have taken her. When I say major road construction, I mean I counted 22 cranes in a two-mile stretch, where the lanes are very narrow, no shoulder, swerving to the right and left (with signs that say STAY IN LANE), workers too close for my comfort, and speed limit still 55 m.p.h.! I couldn't stand the idea of him out there with all those other people driving near him, and working around there. When I called him after the appointment to ask what he'd like us to bring home for dinner from takeout, he was in bed sleeping. We woke him up.
Those are but a few examples.
I finally got them to hire housekeeping help, but they will only accept two hours every other week. They won't let anyone come in for anything else. I have to cut my mom's toenails, clean their CPAP machines, take out garbage, do dishes, get groceries (dad does some shopping), clean the refrigerator because they let food spoil and think it's still good to eat and wonder why they have diarrhea. I was doing their meds, but my daughter took that over about two weeks ago. That takes an hour or more, especially for calling refills in as we do it. I do it immediately so it's not forgotten. Keeping inventory of their meds is a big deal. Running out is serious business.
I got county social workers to help, but they aren't responding to their advice either. They recommended more in-home help. They can go to assisted living or a nursing home. All refused. Half the time when I want to clip mom's toenails, she refuses. She won't shower. Says she will next week. Says sponge bathing is enough. I finally got them preloaded bathing wet wipes and they do like that. Mom smells better. Dad was fine before, but he uses them too because it's easier.
I could go on! But this gives you an idea of the life of a caregiver. And I live 20 miles away. I can't just pop over for a few things here and there. I incorporate my own grocery shopping as long as I have to go for them, so it's a big affair. I like the cold weather so my food will stay fresh in the trunk. Before, I had to shop for us after I left their apartment on the way home, and on the way to their apartment for them. Now I can do it all together.
The only exercise I can get in now is housework, yard work, and taking the dog for potty walks. All things I have to do anyway. I did fit in a few exercise DVDs the past month, but it's really not feasible to count on that. I love doing them, though. I bought a new set, but it will have to wait.
My time is not my own. This may drag on for years. I've been told by someone who is very knowledgeable about these things that I will die before they do. For several months, my daughter didn't help at all, with her huge garden that they rely on to cut their food bills. Now she's kicking in again, with her canning and food preserving done. What a relief. She said I have to work on them to get more help in the house. If they don't listen to me, they certainly won't listen to her, so she relies on me to do the talking. They can afford it, they just resist because they're trying to hold on to their independence. It must be sad and scary losing the life they had. They seem to be trying to prove to themselves and probably the rest of the world that everything is okay.
My weight loss goals may be just a dream for some time, probably years. I don't want them in a nursing home. I want them home, just want them to get more help so my daughter and I don't collapse. They said last week that they didn't ask us to do anything for them, it's all voluntary, we can stop, we should stop, just don't help, they'll be fine. Are you kidding, mom and dad? Like my daughter said, how can we not keep doing this when the work is just screaming into our face every time we go over there? I told them last night that when I come, I want to visit. I don't want it to be a matter of doing chores. It kind of kills the joy. They are so sweet while denying our requests. They obviously don't understand what it's doing to us.
This is only a little start. It doesn't end here. My mom fell twice in one week. Landed in the hospital the first time. This was about two weeks ago. It was a battle convincing them to get a medical alert system. Even after my mom fell in the bathroom two months ago and laid on the floor for five hours until my dad woke up in the morning. She said it was no problem. She didn't mind. :O
They are not listening to social workers or anyone else. I will not declare them incompetent because it will hurt them more than it will help me. At some point that will change. But I insist on making this as ethical an endeavor as possible in every way. They helped so many people through the years and were good parents to us, the best they could be. They helped my sister and I as much as they could after we were adults. So I'm doing my best to help them.
My mom's hair, the clutter in their apartment, the big water filter apparatus that they can't keep up but keep using (it smelled like dead fish so I had to get filters and clean the thing out, another new job), mom putting 4 gallons of spring water through her CPAP instead of distilled water like you're supposed to (found that out and they told some whoppers to explain that away). Mom's fingernails. I finally was able to clip them in the emergency room after she fell two weeks ago because she didn't know what was going on. They were like daggers before and she refused to let me cut them. It goes on and on. Rotating the inventory in their cupboards after I found three cans of salmon in the cupboard and SEVEN more in the closet across the hall that goes with their apartment. That is only one item. I found three open jars of peanut butter, two of which were expired. Etc, etc.
But I know that I'll get some comfort after they're gone knowing I did the best I could for them.