5 Things I’ve Learned About Dementia By Having Mom Living With Me
I feel like I’m outing all my mother’s personal information without her consent. Yet, I also feel that I’m going to help others because of what I’m writing here. This is a major learning experience for me, nothing I really expected… well, maybe a couple of these things I knew existed, but not to the degree I’m seeing now.
I’m learning a lot after 6 days here with Mom. It’s not been all that easy, but it’s not all that hard either. Staying up with her until she fell asleep at 4:15 a few mornings ago wasn’t fun, but it was better than 7AM, which my wife had to deal with Mom’s first night here.
There have also been a couple of emotional breakdowns I wasn’t really prepared for. I haven’t cried but Mom has… and it’s not because of anything I did… not really anyway. I’ll say this, though; even if it’s ends up being a long while I’m really glad I made this decision instead of the one I almost made.
Lessons… let’s look at 5 I’ve learned in just 6 days:
I’d believed Mom had this for at least 5 or 6 months, but hadn’t realized just how bad a condition it is. For some reason, when the sun goes down or it gets into mid afternoon many elderly start to get really agitated and confused. They can’t sit still, they get erratic and fussy and they do kneejerk reactions to things that are on their mind.
When Mom was living by herself she’d hop in the car and drive to Wegmans, even if we’d already been earlier in the day. Last week, the day before she fell, she had Wegmans and Subway on the mind, even though she didn’t have a car to drive anymore.
With us, she’s only exhibited these symptoms twice, which either means she’s relaxing some or just hasn’t gotten acclimated to being in our surroundings. When it comes on there’s nothing you can say or do to stop it except try to ride it through. Luckily, we’ve learned some lessons which includes making sure all the doors are locked and bolted. We’re also making sure she’s not alone during this period because she keeps wanting to get up and walk around, and after falling last weekend we’re not taking any chances with that either.
If she’s upset with us for controlling some of these things she isn’t saying or acting like it; then again, see #4 below.
When they get fixated on something nothing else matters. In Mom’s case it’s two things, one that we moved quickly to mitigate, the other… well, not so much.
My wife set up a whiteboard I bought for Mom so I could write messages for her when I’d leave her every week after I’d visited with her for some hours. She was writing the date on it every day, along with the day and a brief welcoming message.
That worked well until Saturday morning… when suddenly she was fixated on going to the post office and money for some reason. As my wife kept listening, she realized that Mom was wondering about a check she gets every month around the 28th that she needs to deposit and suddenly that was the only thing on her mind. Once we removed the whiteboard she stopped talking about it after about 10 minutes, and we breathed a sigh of relief… at least for that issue.
The other is her purse and other money. Mom’s always hidden money in the house, and I knew the location of it… well, I think I have it all. lol Anyway, over the past year I’ve also dealt with her walking around with thousands of dollars at a time, which was scary. I’d take it out but as soon as I left the house she’d take it from the hiding space and put it back in her purse and it would stay there until I came back the next week.
I’ve removed almost all the money from her purse except for a small bit of it, which is still more than she’d have been allowed to keep if I’d actually moved her to assisted living. She understands that part, yet she keeps pulling out the money I’ve given her, counting it and putting it back. She also keeps pulling out her purse and counting the little bit of money I’ve left in there.
It’s the money in the hidden space in her home that she can’t seem to let go of, because she’s not the one who removed it. I told her it’s safe and she wants to see it, but I know if I show it to her that the next battle will be that she wants it in her purse. We handled this one by taking her purse without her knowing it and making her think she’s lost it. Truthfully, I don’t know where my wife put it, so I’m not lying to her when I say I haven’t taken it. By the next day she’d forgotten about the hidden money and only occasionally asks about the purse; whew!
Still, we know something else will be coming soon; that’s just the nature of the beast.
3. Cold All The Time
This one turns out not to be specifically related to dementia but it’s freaky to me. Mom has always been what she calls “cold natured”; at least in the last 5 years or so. Whenever I would visit her she’d have the temperature set on 85°, which was oppressive for me. I’d turn it down to 78° while I was there and then take her out so the house had time to cool down.
In my house over the winter, my wife and I kept the temperature around 66°, using kerosene heaters to get us warm when we got chilled. With Mom, we’re running one heater any time she’s in the living room, which is upwards of 15 hours sometimes. Even turned down low, if we’re sitting near Mom it’s hot, and there’s nothing to do about it. We’re hot though; sometimes she still complains about being cold. Could she really be that cold?
In her bedroom we have her under an electric blanket and that seems to keep her warm. At some point during the night she’ll throw the covers off because she’s too hot, but eventually wake up cold and pull them back on. I think we all do that; I know I do. It’s going to be interesting to see how much our utility bill increases.
4. No Recollection Of Anything
I mentioned this one at #1. It’s amazing the things she remembers. She’s not bad at trivia, and she knows all the places we’ve lived. After that… she doesn’t remember when we lived where we lived. She remembers the month and day I was born but not the year. Sometimes she forgets my dad, her mother, her grandmother, and many other relatives and friends aren’t alive anymore; that’s when it sometimes gets emotional.
She doesn’t remember that she’s eaten after about 30 minutes. She doesn’t remember asking me a question 30 seconds after asking it. She can remember what’s happened on TV shows she’s seen in previous years, but now she’s asking me if it’s happening in the house. She can’t remember that she’s in my house, where the bathroom is, or that she’s already seen a movie that, while she’s watching it, she’s quoting lines from it before people say them.
That part is scary, but it also offers some benefits if I’m savvy. There are things I don’t want her to remember, or even bring up, so if I dodge and parry well them I’m good to go. I’m not as accomplished at this type of thing as my wife is, but I’m getting better. 🙂
5. Gotta Keep A Sense Of Humor
This one is important for lots of reasons. Mom doesn’t remember things so instead she makes things up. Not lies, just scenarios. For instance, we were watching Independence Day when she asked me when was the last time I was in space. Sometimes she doesn’t believe me when I tell her we’re in my house, or that I even have a house.
I hear things all day long that either frustrate me or make me laugh. I’m trying to learn to take everything as a bit of humor so that I can relax a bit more. The thing is, I know she’s not going to remember anything within a few minutes, so it’s a waste of time for me to get frustrated.
Right now I’m at about 90% for finding as much humor in everything that I can. With that other 10%, I need to learn to adopt the kind of demeanor my wife has. Course, it’s my mother and she knows how to hit a few of my buttons even with diminished mental capacity. Still, I’m supposed to be above that sort of thing; after all, I’m a leadership authority after all. lol
I’m sure I’ll have a lot more to share as time goes on. Whether it’ll be on this blog or a different blog I’m not sure. Just wish me peace and I’ll wish this never happens to you or anyone in your family. There are crueler things that can happen, but this is right up there.