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Re: Challenges you face when caring for someone with dementia

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Message 11 of 38

Thank you, and I would think that would help a lot of people to relax. Somehow, I don't think it would calm him, though. We've always had a rule that I never sing. He sang professionally for a few years and was quite good. I, on the other hand, cannot even carry a tune. He has always found the sound of me trying to sing very offensive. Bad singing, from any source, has always really bothered him.

 

He is getting worse. His disease course is making his doctors reconsider his diagnosis.  They are doing a lot of new testing, thinking maybe mixed frontotemporal dementia, maybe something else. They just aren't sure anymore.  It's possible that he needs very different treatment. It will take time to find out.

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Re: Challenges you face when caring for someone with dementia

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Message 12 of 38

Singing might be very important - but just reading your posts I got the feeling that you are trying to force somone to something they don't, or can't do. There must be hundreds of things which would help with demtia, singing cannot be the only one. - I don't mean any harm by saying that. It's just I got that feeling when reading your post. Of course I might be totally wrong - I apoligize iif I am.

Bengal
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Re: Challenges you face when caring for someone with dementia

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Message 13 of 38

 


@karent141049 wrote:

I do worry about future finances but I don't see any solutions. As for Medicaid, I looked at the rules online and we are caught in the middle where we will have too little to live on, or hire help on, but too much to qualify for Medicaid. It's kind of a catch-22 for older people especially, I think.

 

He is up every hour at night, but often naps some during the day. I try to grab a shower when he starts a nap so I will be sure to be finished before he wakes up. The future is uncertain but I try to focus on the now. And the rules could change, or a new agency could spring up  or something. I try to keep in mind that a negative future is not written in stone.


An eldercare attorney can help you look at those Medicaid rules and plan ahead. They are very complicated, but can be worked around. Worth it to pay for a consultation, or, to go a cheaper way, consult with a geriatric care manager. Yeah the great middle class gets squeezed. But between the area agencies on aging and the care manager/lawyer route, you can make sense of it. And there's a 5 year forgiveness period... 

Hooray for naps. Reminds me of having an infant. Will they nap for 5 minutes or an hour?? What to do?! Run around like a headless chicken!

 

I don't want to raise your anxiety, truly, and living in the NOW is awesome as an aspiration. KEY to mental health. And... maybe... when your anxiety revs up, use that energy to go beyond online research. WebMD is information, and not a doctor...

 

You rock, no question, and happy new year!

Jane

 

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Re: Challenges you face when caring for someone with dementia

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Message 14 of 38

I think you rock, and a happy new year to you too. The elder care lawyer sounds like a good idea, as soon as our finances settle. There are several things up in the air right now, that the elder care lawyer could not effect but that could effect what an elder care lawyer could help us with.

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Re: Challenges you face when caring for someone with dementia

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Message 15 of 38

@karent141049 wrote:

I do worry about future finances but I don't see any solutions. As for Medicaid, I looked at the rules online and we are caught in the middle where we will have too little to live on, or hire help on, but too much to qualify for Medicaid. It's kind of a catch-22 for older people especially, I think.

 

He is up every hour at night, but often naps some during the day. I try to grab a shower when he starts a nap so I will be sure to be finished before he wakes up. The future is uncertain but I try to focus on the now. And the rules could change, or a new agency could spring up  or something. I try to keep in mind that a negative future is not written in stone.


An eldercare lawyer can help you 


@karent141049 wrote:

I do worry about future finances but I don't see any solutions. As for Medicaid, I looked at the rules online and we are caught in the middle where we will have too little to live on, or hire help on, but too much to qualify for Medicaid. It's kind of a catch-22 for older people especially, I think.

 

He is up every hour at night, but often naps some during the day. I try to grab a shower when he starts a nap so I will be sure to be finished before he wakes up. The future is uncertain but I try to focus on the now. And the rules could change, or a new agency could spring up  or something. I try to keep in mind that a negative future is not written in stone.


An eldercare attorney can help you look at those Medicaid rules and plan ahead. They are very complicated, but can be worked around. Worth it to pay for a consultation, or, to go a cheaper way, consult with a geriatric care manager. Yeah the great middle class gets squeezed. But between the area agencies on aging and the care manager/lawyer route, you can make sense of it. And there's a 5 year forgiveness period... 

Hooray for naps. Reminds me of having an infant. Will they nap for 5 minutes or an hour?? What to do?! Run around like a headless chicken!

 

I don't want to raise your anxiety, truly, and living in the NOW is awesome as an aspiration. KEY to mental health. And... maybe... when your anxiety revs up, use that energy to go beyond online research. WebMD is information, and not a doctor...

 

You rock, no question, and happy new year!

Jane

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Re: Challenges you face when caring for someone with dementia

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Message 16 of 38

I do worry about future finances but I don't see any solutions. As for Medicaid, I looked at the rules online and we are caught in the middle where we will have too little to live on, or hire help on, but too much to qualify for Medicaid. It's kind of a catch-22 for older people especially, I think.

 

He is up every hour at night, but often naps some during the day. I try to grab a shower when he starts a nap so I will be sure to be finished before he wakes up. The future is uncertain but I try to focus on the now. And the rules could change, or a new agency could spring up  or something. I try to keep in mind that a negative future is not written in stone.

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Re: Challenges you face when caring for someone with dementia

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Message 17 of 38

@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 18 of 38

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 19 of 38

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 20 of 38

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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