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Re: Challenges you face when caring for someone with dementia

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Message 11 of 37

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 12 of 37

 


@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 13 of 37

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 14 of 37

@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 15 of 37

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 16 of 37

@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 17 of 37

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 18 of 37

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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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 20 of 37

@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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