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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:

1. Sundowning

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.

2. Obsession

Elefantengedächtnis: Elefant mit KnotenCreative Commons License Marco Verch via Compfight

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.  

10 Unique Central New York Scenes

Well… at least these are unique to me. I’m sure everyone who lives in the area has pictures that are unique to them, and some of them might look exactly like some of these. What I’ve tried to do is highlight some of what’s unique to central New York in a different way than many other people might do. I know that a couple of these will look exactly like a picture someone else took but, except for one of these, all of these were taken by me. One is from my friend Scott Thomas, but since it’s not a high definition shot and he’s getting attribution I don’t think he’ll mind all that much.

This is also day #29 of having a new post on this blog, and since it’s Sunday I know most people don’t want to read a bunch of content. So sit back and just enjoy the images. 🙂

Carrier Dome

This is a picture inside the Carrier Dome before a Syracuse Orange basketball game. It’s not easy to capture a great shot of the crowd from the inside; trust me, I’ve tried. 🙂

Green Lakes

Central New York is known for its lakes, and Green Lakes is no exception. I took a bunch of beautiful shots one day when I walked around the lake… almost killing myself!

Lights On The Lake

Every winter we get the Lights on the Lake presentation alongside Onondaga Lake. I think it’s best when there’s snow on the ground, but getting individual shots like this one are pretty fun.

NBT Bank Stadium

The stadium where the Syracuse Chiefs play baseball. I love the look of a baseball diamond and maybe if I hadn’t hurt my arm freshman year in college I’d have had a shot at a major league career. I can dream can’t I?

I probably have hundreds of shots of Onondaga Lake during the day but I don’t have a shot like this. I’m betting few people have thought about shooting this one; we’ll find out I suppose.

Lake Ontario sunset

Oswego counts as central New York which means we get to claim our piece of Lake Ontario. Renown as the location of one of the top 5 sunsets in the world, I have lots of these shots as well. This one I’m sure lots of people have taken.

sand sculpture NY State Fair

This is one of my favorite sand sculptures ever from the New York State Fair, which is held right here in Syracuse. I could have chosen from dozens of shots but this one seemed to be the most fitting.

Stella's Betty Boop's

Stella’s gets a mention meanly because of its affinity for Betty Boop dolls. I’ve always been a Betty Boop fan and there’s probably few places around the country so enamored with her.

Syracuse City Hall

This is another shot that I’ve seen a lot of pictures that look like it. I only hope it’s slightly unique when compared to the others. It’s one of the coolest city halls in the country in my opinion.

hockey game Syracuse War Memorial

I’ve been to a lot of events at the Syracuse War Memorial but lately I’ve been going for the hockey games. The Crunch are fun to watch and now I have a 3-game winning streak after having them lose every game I’d been to for over a decade. 🙂

That’s all I have; I hope you enjoy these shots.

Local Specialized Syracuse Magazines And Newspaper

I’m not a major fan of the big local newspaper but I’ve always had an affinity for the smaller periodicals and a couple of the newspapers. I remember years ago when we had The Call, which was the local black newspaper run by Eddie Moss, and of course I’ve been a fan of the Syracuse New Times for decades.

These days there’s a bunch more magazines, some I check out often, a few I don’t. I’m going to highlight 3 magazines and one local newspaper; only one of these magazines do I now check out all the time, but here and there I’m compelled to see what’s going on. All of these are free, so there’s no reason not to look at them from time to time.

The first magazine is 55 Plus, which I started reading just before I turned 55. As you can imagine, it’s geared towards the older set, but that doesn’t mean they don’t cover any other types of stories. For instance, the most recent magazine not only highlights Van and Linda Robinson, but offers financial tips for retirement, people who are uncovering shipwrecks from the bottom of Lake Ontario, and some restaurants in Skaneateles. Laura Hand, one of my favorites from back in the 70’s when I first moved here also has a nice feature written about her.

Next on the list is Family Times, which is geared towards parenting. This one I don’t check out all that often, since I’m not a parent, but that doesn’t mean it doesn’t ever have something I’m interested in. For instance, this month’s issue talks about baking cookies, something I’ve never learned how to do but always read about it. There’s also an interesting story about body image for both kids and parents, something I haven’t thought about in decades but something I remember from my childhood.

A special feature in this magazine is all the family friendly events occurring in the Syracuse area each month. There’s so many that anyone saying there’s nothing to do in this city doesn’t know what they’re talking about.

Just over 5 years ago I did a feature where I wrote about Syracuse Woman Magazine. I haven’t seen that one in a long time, so it’s possible that it’s been replaced by a magazine called Women of Upstate New York. It’s a bimonthly magazine that highlights women; that kind of makes sense.

I’m not going to lie; the covers almost always catch my eye. We have a lot of attractive women in central New York. 🙂 This month they’re featuring a model and actress named Jaclyn Hales, who will be starring in a new TV show just being shot called Extinct. Of course, the magazine covers a lot of other topics that both men and women can enjoy. One I liked was a motivational article offering tips for people to feel good over the winter. Another talked about local theatrical presentations while highlighting Syracuse Stage. These are things that men as well as women can benefit from.

The last thing I’m highlighting is a newspaper called In Good Health. You probably already figured out it’s about anything related to health, but it’s more than just tips on being healthy. For instance, telemedicine is still relatively new but it’s growing locally, and that’s a good thing. There’s also a story about why so many people are avoiding the dentist. I also get to mention that a friend of mine, George Chapman, has a monthly column in it called Healthcare In A Minute, where he tells people the truth about health care issues that people either don’t know about or think incorrectly about. I would know since I’m also a health care consultant. 😉

As I said, all 4 of these are free and supported by advertising. I pick mine up at Wegmans, but I believe they’re in most stores across the area. Go ahead and pick one up; I know it’s not like looking at things on your smartphone but they’re all still pretty cool.  

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