The Silent Burden of Caring for a Dementia Patient

As I recount my experiences with my wife's journey through frontotemporal dementia, you're invited into the heart of what it means to care for someone with this relentless condition. From the complexity of managing medical appointments to the sensitive topic of personal hygiene, I reveal the often-unspoken challenges that caregivers face. The resistance to routine bloodwork and the necessity for professional dental care are just some of the hurdles we navigate daily, alongside the emotional toll of providing round-the-clock support. This episode also shines a light on the importance of considering nursing care and touches upon the intricate process of preparing for Medicaid eligibility, which can be as much a logistical endeavor as it is a financial one.

Every Saturday, we bring you a new episode filled with poignant stories and invaluable insights for those in similar situations. We're committed to sharing these narratives across various platforms, aiming to foster a community of support and understanding. As we conclude this week's episode, I extend my heartfelt thanks to our devoted listeners and encourage you to tune in for more heartfelt reflections. It's an ongoing conversation that promises to provide comfort, guidance, and the realization that you are not alone on this journey.

Transcript

Speaker 1: 0:00

Good afternoon. This is Ken Cullen and we're going to talk about on episode 3. We're going to touch on doctors appointments, hygiene and possible nursing care. So To begin with, let's start with the doctors appointments. So, as you guys noticed in my previous episodes, my wife was diagnosed with this front lobal dementia in 2016, april of 2016 to be exact. So we're coming up on the eight year anniversary. I think it was around the 10th of April of 2016 when we first got the diagnosis from the, from the MRI, which was atrophy and deterioration behind the right eye, and it was in the early stages. Again, the symptoms were not very noticeable, but there were some signs of forgetfulness and Odd behavior. Let's put it that way. So, as you move forward, we're gonna talk about doctor's appointments.

Speaker 1: 1:02

I the reason why I bring this up is because I feel it's very important for people to understand that when someone's diagnosed not only with dementia but with any disease, that is, that you try to get your doctor's appointments in as soon as you can, and I'm talking about blood work and and mammograms and any anything else that has to deal with your well-being. In my wife's case, she used to go to quest diagnostics for blood work, never had a problem in the past with it. Now I do. Up to about a year and a half ago Everything was good. Now that's not. That's not working out. Brought it to a primary doctor up here in my area here, which is a the Garden City, minneola, franklin Square area of Long Island. Didn't work out. They suggested maybe we could bring a nurse to the house so we could try to draw the blood. That way I wanted to get the lipid panel done and the the sugar, this check to see if she was diabetic, because I know what dad was and my wife wasn't. Up to about a year and a half ago, the last time had the blood drawn but that didn't work out. I had a nurse here twice, didn't. My wife would not comply with it, pulling the needle out. They suggested maybe you can give her a half a xanax or some volume. I was. I was thinking of doing that, but then I was concerned that she'd be out of out of commission for a good part of the day and if I had to get her to eat or to the bathroom although she used to go to the bathroom on her own she would be so out of it she wouldn't go and she wouldn't get up and I don't want to be strapped with that type of a situation. So I elected not to do the xanax or the value um. So I mean that's one of the situations I'm up against.

Speaker 1: 2:44

The other thing I wanted to mention I might have mentioned it again in previous episodes was the hygiene as far as the teeth. The brushing of the teeth is so important because it affects the bloodstream and in my wife's case she stopped brushing her teeth about a year ago and I've tried to do it on my own. The dentist said you know, try to do it on your own. Try to. My wife will not let me. She gets feisty and fighting me off, you know, and then I get aggravated and then it comes into a situation where I'm aggravated, she's not doing it, I'm getting annoyed and it's not going to work out. So I worked it out with the dentist now where they'll do her teeth twice a month. They do it. I don't know if it's a deep cleaning or a regular cleaning and they have told me the last few times that teeth are not that bad All things considered. So I'm grateful for that.

Speaker 1: 3:35

As far as nursing, I don't need a nurse here, I mean me and my daughter take care of it, I mean. But my suggestion is this when you have somebody that's diagnosed with a disease and it doesn't have to be dementia, it could be cancer, god forbid or ALS, god forbid, or any all these other diseases that are out there If you're going to get help, I suggest that if you're going to do it, to try to do it early on, because if I was going to do it, it was suggested to me a while ago from a friend of mine, a coworker, that maybe you should get an aide or a nurse or some sort of help, and I elected not to do it because the changes weren't that bad and she was functioning. I mean, we were functioning great, going out, going to dinner, going for lunch, I mean everything was fine. She was still driving too. She was driving up to 2018. So I didn't want to make any changes at that particular time because I didn't think it was necessary. One thing I did do but I don't want to get too much into this now, but we'll get into it in episode four is the distribution of assets. It's very important that you realize, when a person is diagnosed with something like this, any kind of property or assets. They have have to be protected for Medicaid reasons. If you know again, if that's the rat you're going to go. So again, I don't want to delve into that. That'll be episode four. We're getting back to this.

Speaker 1: 4:57

The cleaning of the teeth, hygiene, showering doesn't seem to be a problem for my wife. I mean I say, you know, put it this way, she won't go into shower unless I directed to. But she'll do it. Once she's in there She'll shower. She used to blow dry her hair. That doesn't happen anymore. You know, I do it manually now with the towel and everything, all of that.

Speaker 1: 5:18

As far as dressing, she dresses herself. But I have to give it a close. She ain't going to just go look for them. Give it a close, she dresses herself. I mean we're going to go downstairs, we start our day. I think I mentioned that in previous episodes. As far as breakfast, I make that I pretty much do it all for her. I mean I do laundry. I mean, look, I'm not bragging. I mean this is what I got to do. I mean I retired four years ago from Verizon and this is what my job is and this is what I got to do. So I do the laundry, give her breakfast, get her into the shower. Not every day. She goes in like maybe three times a week. She doesn't go anywhere and again, I got my daughter to help me out, so that's a big help. She's in college, farmingdale State, had another year to go and then she'll be done and then hopefully she'll be off to the races. But in the meantime I'm grateful to have her help, because if I didn't have her, I would have to hire somebody, and I can just tell you from past experience I did have somebody in for my mother-in-law back in 2011 when she had the early stages of cancer and my daughter had called me at work and said Dad, you better come home.

Speaker 1: 6:19

Grandma's on the floor. I said what happened to the eight? Nobody knew. I was in the kitchen at the time. I came home and there was my mother-in-law on the floor. So here's my point. I'm not saying all aides are bad, but in this particular case, this one didn't work out for me. This was a big woman. This woman was like 5'11", 6' foot. She was bigger than I was, but the bottom line was she wasn't paying attention and there was my mother-in-law on the floor. Now what do I do? How do I get the cop to get her off the floor and bring her to the hospital? And ultimately she never came home anyway and then she ended up going into a nursing home and passing away and obviously that really pissed me off.

Speaker 1: 6:55

But the point I'm trying to bring out is just because you have an eight here doesn't mean it's going to work out, and when I had that experience I wasn't going through it again, so I'm taking care of it myself. But I must stress something to you guys out there that are listening in. It's very important and I can't stress this enough If you don't have a big family, you have to make sure you get help somewhere, because you, as a caretaker, you must have an outlet. I have a gym in my garage. I got my weights, I got everything there and I have a little gym set up. I was built to me about three, four years ago. I Go to it. I mean I need to. I mean I had a bunch of back surgeries but I still do it. I do what I can. I jump on my treadmill three, four times a week.

Speaker 1: 7:36

Point I'm bringing out is you got to have an outlet. Get to the gym. Do you walk and do your exercising, go to the movies, go out with friends, you know, go to dinner, go to lunch, go to bread, whatever. You guys, you got to have an outlet. It's imperative because if you fall apart, like my attorney tells me, like my financial advisor tells me, like even family members, tell me, ken, if something happens to you, what the heck's gonna happen to her. I mean my daughter can only do so much. You know what I'm saying. I mean she helps me, I mean she's good at it.

Speaker 1: 8:06

But the thing is, is me as like, let's say, I guess you could call me like the primary caretaker. Me and my daughter, it's equal. But the thing is, if you, if you don't take care of your own health, then you're not gonna be any good for anybody else. So it's imperative, again, it's essential that you take your that, like when my daughter is home from school, I Do my thing, I do my banking, my gym, whatever I got to do. Go out with a bunch of friends. You got to have an outlet, or you're gonna, or you're gonna crack, you're gonna crack.

Speaker 1: 8:34

I'm telling you you can only do so much, you know, cuz my day doesn't stop. I get up early. I first thing I do is get her up, get her day going laundry, breakfast, she watches game shows, you go for walks and the day kind of settles into whatever it's gonna be. But you got to advise them back of your head because Bottom line is you know, if you don't, if you don't lock things up and watch things, you're gonna have a problem. I have the stove locked up, I got the cabinets locked up, I got the refrigerator locked up, because my wife doesn't know when she's hungry, when she's not. You gotta kind of figure this out yourself and you know you go, you go with it on a daily basis and you kind of figure it out.

Speaker 1: 9:11

But again, to deviate away a little bit, I don't have to worry too much about her wandering off. She doesn't open the door and want to thank God. I know people that have done that with dementia. My wife doesn't do that. There's no wandering, she's not nasty. The only time she gets a little nasty with me is when I'm trying to do something to help her, like, hey, I got a brush your teeth. Well, you're not doing it, you know. So that's not gonna happen. I mean she don't say that, but her mannerisms dictate that it. That's not gonna happen, so you know, she doesn't have a problem eating, she doesn't have a problem going to the bathroom. So I guess that she wears a diaper, she wears the pens, but for the most part she very rarely makes an accident. She goes to the bathroom on her own, I mean, and in the morning I change the diaper, and you know, it's pretty good, not too bad, and the day rolls.

Speaker 1: 9:52

Every day is pretty much the same. I'll tell you one thing that does get a little depressing, though, and then not to be not, not to get anybody upset or nothing, but holidays are tough. I'm gonna be honest with you. Christmas Eve, christmas day, was very hard here, because you know you can't have a holiday, no more. I mean, we used to have so many people here. Forget it. 15, 20 people. My in-laws were alive. It's so many people. I mean, I wanted the truth. It was actually overkill. I you know, in a way I didn't want all that, but now I went from one extreme to the other. Then you got nothing. Now I got nothing. Now it's just, every day is the same. It can be Easter, 4th of July, christmas, flag day, it don't really matter, every day Is the same. You go through the same routine day in and day out.

Speaker 1: 10:31

So, as I close this episode, the only thing I want to stress to you guys is Make sure, as a caretaker, that you get your breaks in, that you get your outlet. You must have that outlet to unwind. It is so important because without that you're never gonna make it. That's the bottom line. Just take that. Take that the hot. So I'm gonna close this episode here.

Speaker 1: 10:52

I just want you guys to know that these episodes will be posted on Saturdays. They usually go to various platforms. I'm still working out the details. It'll probably go on YouTube, apple, spotify, stitcher I heart radioed is a bunch of them. Facebook I'm not really sure I might have to do my own video. I'm trying to do a video podcast, also for Facebook. I don't want to bore people doing too many of these things, but they'll be pretty much aired once a week, usually between two and three on a Saturday. Okay, so, as I close episode three, this is Ken Cullen. I want to thank you for your time and we hope to see you episode four. Have a good night and thanks again for your time. You.