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Message 21 of 38

@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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Message 22 of 38

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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Message 23 of 38

@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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Message 24 of 38

@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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Message 25 of 38

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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Message 26 of 38
According to the National Diabetes Statistics Report published by Centers for Disease Control and Prevention, in 2015, In the US 1.5 million new cases of diabetes were registered and approximately USD 245 billion spent on diagnosis and treatment of diabetes.
Browse Complete Premium Research Report https://www.marketresearchfuture.com/reports/smart-pills-market-6591
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Message 27 of 38

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.

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Message 28 of 38

@karent141049

 

Dear Karen -- it sounds like taking care of your husband is very challenging.  I was talking to a friend who also dealt with her husband having what sounds like similar rages until he finally got diagnosed with dementia.  He actually felt better after hearing a diagnosis of dementia because it explained why he was having such problems processing information and with his memory.  But it is very common for people in early stage dementia to deny the diagnosis and be quite angry when people tell them that is the reason for their problems.  Anger is often a cover for the fear, grief and loss the person is feeling. 

 

Several practical tips:  First accept that denial is a frequent reaction to hearing the dementia diagnosis.  Second, don't force the issue.  It can lessen the stress to explain that their memory problems are because their brain isn't working as well as it used to rather than insisting their problems are the result of dementia.  Be in the moment with them rather than naming the culprit.  The final recommendation is to recognize that this is super stressful for you and seek the support of others and regularly seek out respite.

 

Here is respite advice from a recent blog posted by our friends at the Coalition to Transform Advanced Care: 

 

Have you asked for support from your community? A few hours to attend to errands, get a new hairdo or spend some time in nature or with an old friend could make a big difference in your well being and those around you.

Sarah Lenz Lock, AARP Expert Brain Health
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Message 29 of 38

He admits to many of the things he can no longer do. He asks me to help him or to do things for him because he can't. He admits that he makes constant mistakes, has to be reminded of many things, helped with many things, and has what he calls "fuzzy times", but he gets very angry if I point out any of these things when they are happening. He has terrible "tantrums", as he calls them. They are all out rages. He rages over nothing and once he starts, he can't stop until he is exhausted.Then hesulks. He does not take medication for dementia because he has other illnesses and his neurologist thinks adding the dementia drugs would be too much for him. He also had a brain abscess years ago that left him with very minor deficits. He has had a recent MRI and some other tests to make sure there is no new problem relating to that, and they found nothing. His mother died of early onset Alzheimer's. Now he has it, but he insists he doesn't. He pretends his problems are much more minimal than they are, claims he never had a good memory anyway, and insists he's just having a little more trouble from the old brain abscess. His neurologist knows all this and just says to hang in there because he won't be able to deny it much longer. I feel like the mother of toddler going through the terrible twos but the toddler is twice my size. I'm afraid that if I stopped helping him he would have a physical health crises. She also says this is all about his anger and frustration that this is happening to him and that, in time, he will accept it. He is already a full time job for me and his Alzheimer's is still in a fairly early stage. One thing I've learned is that a spouse does not get Alzheimer's; the couple gets Alzheimer's...

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Message 30 of 38

@karent141049 wrote:

Does anybody have any advice as to how to deal with a recently diagnosed spouse who is in total denial? What do you do, as you watch somebody slowly deteriorating but they insist they have been mis-diagnosed by two different neurologists?


Whoooo boy, Karen, that's heartbreaking. 

Well, i have a few ideas. Tell me what you think. 

 

I used to work in a chemotherapy clinic as a social worker, and i ran a whole bunch of support groups. "Denial" was one of our favorite topics. And one of the things that my cancer patients taught me is that it hardens the 'denial' if you come at it directly. People just dig in. So instead of trying to figure out a way to chip away at his denial, you just go on about your lives together. Don't fill in for his blank stares, finish his sentences, rescue him, unless he would hurt himself or you if you didn't intervene.

 

Ways to spot that the denial has big holes in it:

Did the neurologists prescribe one of the drugs that slow dementia? is he taking it? 

Is he writing down more reminders for himself?

Are there certain things that he can no longer do and he admits it?

 

I had a friend who's mother developed dementia, and one way the daughter could tell was that the crossword puzzle was no longer filled with words but with doodles. 

 

One other point: it's hard to admit to your wife that your brain is broken and getting more broken. Does he have a brother, or a minister/rabbi/yoga teacher that he trusts? Does he have future appointments with his primary care provider? Make that brother/adult son/best male friend/clergy person go, too. Your husband may be more candid. Or maybe less candid. Does he have a sister?  You know his world: who would he listen to?

 

What do you think? Please write more.

Jane

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