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Re: Challenges you face when caring for someone with dementia

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Message 11 of 32

@karent141049 wrote:

I know you're right about all three of those things being important. It's so easy to forget to stay positive and keep an eye on my own anxiety level. I can so easily fall into that trap of imagining future problems and then feeling anxious about them. And it can be difficult to find enough time for sleep and exercise. Everything I do for myself has to be fitted in while he's sleeping. I know this is a common situation for caregivers, trying to find the time for self-care. I also think that if I am more aware of it, I can manage my own time better. Thank you. I really appreciate the way people have taken time from their own busy lives to reach out. It makes me feel more positive that others are further down this road and still coping.


Hey Karen, I am inspired by your self discipline and self care. I'm curious: as you look ahead (and manage your anxiety about it), have you looked at your finances and anticipated expenses, so that you AND he can stay healthy? By looking at hiring help eventually, even one day a week can be hugely helpful, or by looking at the implications of qualifying him for long term Medicaid eventually? Which, depending on your state, might translate into hours of aide help that is covered by Medicaid? There's a world out there to help you and him. While you have time now, maybe looking into these things will help prevent anxiety. You'd be prepared.

 

Does he sleep a lot? i hope you get a bit more of a break than just when he sleeps...

So glad you wrote.

Jane

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Re: Challenges you face when caring for someone with dementia

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Message 12 of 32

I know you're right about all three of those things being important. It's so easy to forget to stay positive and keep an eye on my own anxiety level. I can so easily fall into that trap of imagining future problems and then feeling anxious about them. And it can be difficult to find enough time for sleep and exercise. Everything I do for myself has to be fitted in while he's sleeping. I know this is a common situation for caregivers, trying to find the time for self-care. I also think that if I am more aware of it, I can manage my own time better. Thank you. I really appreciate the way people have taken time from their own busy lives to reach out. It makes me feel more positive that others are further down this road and still coping.

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Re: Challenges you face when caring for someone with dementia

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Message 13 of 32

Hi Karen,

This is my first post. My husband has Parkinson’s with dementia as well as other conditions, but he’s still mostly independent.

When you said:

He is already a full time job for me and his Alzheimer's is still in a fairly early stage.

It made me think about how my own anxiety about his dementia getting worse is something I need to watch, as well as how to assist him with his. When I experience nervousness and a sense of dread, I’m not as patient with him. 

Most of the time, I’m able to sleep and exercise enough to reduce stress. Knock on wood that I can keep doing that. Negative emotions can really sap your energy.

Laurie

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Re: Challenges you face when caring for someone with dementia

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Message 14 of 32

I’m afraid the only subsidized “affordable” transportation that covers our area doesn’t have enough vans. They have to prioritize medical appointments over all else so, while (in theory) they were also designed to provide transportation for things like getting groceries or picking up prescriptions, (in fact) they never have the space. Appointments have to be booked well in advance, but if somebody has booked for something like a grocery run, they are bound to get bumped for somebody with a last-minute medical need. And, at $25 per ride, many people can’t afford to utilize them very often. Like many others here, we wind up getting pretty much everything we need online. The only other option we have here, really, is an ambulance and there’s nothing more expensive than an ambulance.

 

Thank you for the Medicaid info. I did not know about that 5 year rule. I looked it up and clearly, we need to make some changes now to protect him later.

 

You are right about eldercare.gov, too. There are a couple of numbers there I had not tried yet.

 

I am 68 years old, and we will reach a point where I can no longer manage him, so we need to prepare for that. Thank you.

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Re: Challenges you face when caring for someone with dementia

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Message 15 of 32

@karent141049 wrote:

Thank you for your caring reply. I'm not too worried about the isolation, since I'm used to it. I don't drive, so long distance services are pretty much out of the question. There is no public  transportation available in this area. What little other transportation is available is just for the barest necessities, like medical appointments, and it's quite expensive. As far as hiring help, we simply wouldn't have the budget for that. I'm afraid I'm on my own with him, up to that point where he has to go into care. Hopefully, that's quite far down the road.


I meant to wish you LUCK at the end of the last post!  I'm surprised there isn't some kind of public, reasonably priced transportation in your area, no matter how rural. Our county is considered so rural, it's "frontier" and it still has subsidized van/buses that go up and down the county for medical appointments and sometimes for other events. Somehow you are managing, and hooray for that. 

 

Since you anticipate a time when you can't manage him at home, it might be useful for you to look up, or call about, the eligibility for Long Term Care Medicaid which would pay for care for him. The Area Agency on Aging would give you that information. In order to qualify, or for him to qualify, he might need to 'spend down' some of his/your assets. You don't have to sell your house, but there are strict eligibility requirements. You are allowed to give away money to, say, heirs or charities, up to 5 years before applying for Medicaid. I know you are hoping the day you need to consider is far away, but, a little planning ahead might provide you a roadmap.

 

AARP has a cool guide for looking up things like the Area Agency on Aging, and i tried it for my tiny town, and unfortunately it didn't work as well as eldercare.gov, so i'd go there and put in your  zip code to find which one serves your area. Ours is one county over, but it still serves us. 

 

Anyway, you sound very resourceful and creative, and you have a real challenge on your hands. And you are willing and able. My, what a lucky man he is.

 

keep us posted if you like, eh?

Jane

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Re: Challenges you face when caring for someone with dementia

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Message 16 of 32

Thank you for your caring reply. I'm not too worried about the isolation, since I'm used to it. I don't drive, so long distance services are pretty much out of the question. There is no public  transportation available in this area. What little other transportation is available is just for the barest necessities, like medical appointments, and it's quite expensive. As far as hiring help, we simply wouldn't have the budget for that. I'm afraid I'm on my own with him, up to that point where he has to go into care. Hopefully, that's quite far down the road.

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Re: Challenges you face when caring for someone with dementia

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Message 17 of 32

@karent141049 wrote:

The challenge is taking care of him without appearing to, since he is convinced that he is fine and I am just interfering. When he does ask for help, he pretends that this is something that is work for a woman, not a man. He was never sexist before. When he needs help but thinks he doesn't, I have to find a way to sneak the assistance in there. I can't have him using a fast acting insulin instead of a long acting insulin. I sort of have to try to keep an eye on him without getting noticed. When I do have to litetally step in to prevent a problem, I never do speak of the cause. I just tell him I think he might be absentmindedly making an error. But he will jump on it and say that he knows what I'm thinking and that it isn't Alzheimer's. I just say something like that it doesn't matter why he's holding the wrong pen, only that he not inject that one. That's about the best I can do. He gets angry that he made the mistake and angry at me for having to point it out. I know his anger is really at the situation, but he feels the need to take it out on somebody and there's nobody else here. He refuses counselling. He refuses any kind of assistance from anybody but me. I just hope he accepts this before he gets to the point where I can no longer deal with him, though with a little luck that could be a long way off yet.

Looking to the future, I have checked with a lot of organizations and services that serve some of the towns and cities in our part of the state, but we are so far out in the country that they all said we fell outside of heir service areas. I will check your list too, though. Thank you.


Thank you for providing more detail. I'm sorry i'm only now catching up to your post. You are a very patient loving wife. Women's work is never done, period. 

 

I, too, live in a rural area. The county has a population of 7,000. Our area agency on aging is located in the next county over, 2 hours away. However, there is a senior center in the biggest town, and various informal and formal services. I'm worried about the burden on you, and the isolation. I hope you've done some planning to allow for hiring caregivers at home, and thought about placing him in a memory care facility eventually. Meanwhie, you are being creative and patient, and that is very hard to do. 

Wishing you look and some sort of respite over the holidays,

Jane

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Re: Challenges you face when caring for someone with dementia

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Message 18 of 32

@sp69357192 wrote:

I am no professional but my wife had dementia. She died in 2017. What was interesting is that she couldn't remember any important event in 2016. We spent several days traveling to be at a wedding, the same traveling to be at a grandson's high school graduation, she was in the hospital a couple of times, and she thought the president was still Obama after the inauguration that she watched on TV. I never pointed out these lost memories unless I was talking to her family doctor. I would point out to my wife that those memories were not really important, but I would describe them to her if she wanted to hear about them again. One sign that she was concerned about her memory was that each day she would want to name all the relatives and their spouses and their children's and grandchildren's names. The family tree (not all that large) was important to her that she kept it straight. She would start it and ask me if she left someone out which she seldom did, but I didn't correct her if she did. She "always had it right."


 

 

This is just lovely. Thank you for sharing your anecdote. You helped to calm her. And she didn't need to be distressed by her failure to remember everyone. Excellent. She was a lucky woman.

 

Jane

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Re: Challenges you face when caring for someone with dementia

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Message 19 of 32

I am no professional but my wife had dementia. She died in 2017. What was interesting is that she couldn't remember any important event in 2016. We spent several days traveling to be at a wedding, the same traveling to be at a grandson's high school graduation, she was in the hospital a couple of times, and she thought the president was still Obama after the inauguration that she watched on TV. I never pointed out these lost memories unless I was talking to her family doctor. I would point out to my wife that those memories were not really important, but I would describe them to her if she wanted to hear about them again. One sign that she was concerned about her memory was that each day she would want to name all the relatives and their spouses and their children's and grandchildren's names. The family tree (not all that large) was important to her that she kept it straight. She would start it and ask me if she left someone out which she seldom did, but I didn't correct her if she did. She "always had it right."

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