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Challenges you face when caring for someone with dementia

What are some of the greatest challenges you face caring for a loved one with dementia? 

 

Get some great answers from our expert, Sarah Lock.  Sarah Lock is Senior Vice President for Policy and Brain Health in AARP’s Policy, Research and International. She leads policy initiatives on brain health and care for people living with dementia and is Executive Director of the Global Council on Brain Health, an independent collaborative of scientists, doctors and policy experts convened by AARP to provide trusted information on brain health.

 

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Dear Sarah,

       I am 85 years old and my wife is 83 years old.   My wife has Dementia.  She has had it for approximately 1 1/2 years now.  You always hear the Medical Side of Dementia but very seldom hear about the everyday challenges faced during this journey.  Despite any Medical problems I have, I intend to take care of her and never, ever put her in a home.  My only help is my daughter who works at a hospital and does the shopping for us etc.  I have written 30 paragraphs regarding this journey with my wife.  Three Doctors have read it and 4 or 5 friends.  They all have indicated that I should try to have it published in a magazine or some form of exposure for people in my situation to read.  I only wrote it for one reason.  I did not have anyone to tell me what to expect.  Anyone I came in contact with would say oh yes been there and done that.  It was written for anyone that is about to or just starting their journey with a family member with dementia.  IF you are interested in reading my experience with dementia and possibly would like to publish it for others.  Please let me know and I can email it to an email of your choice.   Thank you.  

Newbie

Is Dementia a side-effect for seniors who are sheltering-in-place? My 90+ year-old mother has been sheltering-in-place for the past 6 weeks. Prior to that, she attended church, doctor appointments, hair appointments, shopping, etc., so she got out of the house almost every day for something. She is now at home with two adult daughters and receives regular phone calls from friends and family. However, in the past 2 or 3 days she’s made some peculiar statements such as: she’s expecting a phone call this afternoon saying they will have church services tomorrow; she wants to go to a restaurant this afternoon (all restaurants are still closed for in-house dining); she heard on the news that this has all been a ‘play’ or some type of reality show; she called the doctor’s office to schedule an appointment, and got mad because she got a recording (dr.’s office had told her 3 weeks ago that their office was closing for pandemic); called and tried to make a hair appointment since she’d be going to church Sunday; etc. She is not sick and not running a fever and she has been understanding about the situation for past 5 weeks, but now all that seems to be rapidly changing. Is this just cabin fever kicking in, or has anyone else noticed a change in the senior adults/parents they are taking care of? Kay
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@SandraS836262 wrote:
Is Dementia a side-effect for seniors who are sheltering-in-place? My 90+ year-old mother has been sheltering-in-place for the past 6 weeks. Prior to that, she attended church, doctor appointments, hair appointments, shopping, etc., so she got out of the house almost every day for something. She is now at home with two adult daughters and receives regular phone calls from friends and family. However, in the past 2 or 3 days she’s made some peculiar statements such as: she’s expecting a phone call this afternoon saying they will have church services tomorrow; she wants to go to a restaurant this afternoon (all restaurants are still closed for in-house dining); she heard on the news that this has all been a ‘play’ or some type of reality show; she called the doctor’s office to schedule an appointment, and got mad because she got a recording (dr.’s office had told her 3 weeks ago that their office was closing for pandemic); called and tried to make a hair appointment since she’d be going to church Sunday; etc. She is not sick and not running a fever and she has been understanding about the situation for past 5 weeks, but now all that seems to be rapidly changing. Is this just cabin fever kicking in, or has anyone else noticed a change in the senior adults/parents they are taking care of? Kay

Stands to reason, doesn't it.

Is there anyway you can help orient her each day? Watch something like the Today Show to get oriented to day of week, date on calendar, top of the news, and then avoid other news about the virus. Make a schedule: If its Sunday, you watch a worship service online, then bake something? If its Monday, talk to grandchildren on facetime, facebook messenger, zoom, or just the good ol' phone?

 

Somehow ground her in the here and now, and be gentle about 'corrections.' Distractions and interactions and whatever can pass for 'normal' might be better than saying, "but remember we CAN't go to restaurants right now?!?"

 

What do you think?

 

Jane

Contributor

I need advice on how to get my mother to the doctors to be checked for alzheimers or dementia.  She has significant memory issues but whenever we try to talk to her about going to the doctors because we are concerned about her she says there's nothing wrong with her and becomes very mean and storms off. 

 

Thank you.

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@d219112p wrote:

I need advice on how to get my mother to the doctors to be checked for alzheimers or dementia.  She has significant memory issues but whenever we try to talk to her about going to the doctors because we are concerned about her she says there's nothing wrong with her and becomes very mean and storms off. 

 

Thank you.


People who are losing memory and brain abilities are very afraid that their freedom will be taken along with their memory. There's no cure for dementia if what she has is vascular dementia or Alzheimers.  But she may be overmedicated for physical ailments, or may have a low grade infection. Urinary tract infections can impair mood and cognition.

 

One possibility for getting her in to see her primary care provider is for you to prompt the provider, his or her medical assistant or nurse, and say, It's time for your annual check up!! Then, since its not an appointment for her memory but her general health, she might agree to go. Once you get her there, she will probably put on a good show, but clue the doctor in to the fact that you're concerned (quietly, privately, perhaps by fax or note before the appointment) and let the doctor do a mini mental status exam along with the other stuff. 

 

Just might work.

 

Meanwhile, it's important to watch her and see what's going wrong. One clue that a friend of mine had when her mother started to have trouble was that she could no longer fill out the daily crossword puzzle. She put random letters in it and gave up. Is she still driving? Is she getting lost? Does her husband still live with her?What else is going on? For example, if she's refusing to bathe, take her to get her hair done so at least her hair is clean. Go shopping for new bathroom towels and by a shower bench. Put in grab bars. 

 

Your family will need to pull together about resources and who can help with what. Whether or not she gets to the doctor, she's going to need more help.

Tell us more?

Jane

AARP Expert

Hi -- I realized I never posted that article I promised on the benefit of a dmentia chorus. NOte this is really about specialized choruses -- ones in which people with specialized training have tailored it to the specialized needs of people living with dementia and their caregivers.   I could not figure out how to attach it.  But the article is published by Cambridge University Press.  Its available at https://www.cambridge.org/core.  Here is the citation. 

 

Mittelman, M., & Papayannopoulou, P. (2018). The Unforgettables: A chorus for people with dementia with their family members and friends. International Psychogeriatrics, 30(6), 779-789. doi:10.1017/S1041610217001867

Sarah Lenz Lock, AARP Expert Brain Health
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Sarah, thank you for posting. I’ve heard of this program, and it sounds terrific. That link is broken, but I searched “The Unforgettables: A chorus for people with dementia with their family members and friends” and found lots of articles, including the Washington Post at:

https://www.washingtonpost.com/lifestyle/2018/12/27/this-choirs-features-singers-with-dementia/

Mary Mittelman, a research professor with the Center for Cognitive Neurology at New York University, started a choir called the Unforgettables Chorus in 2011 to study the effects of a choir on people with dementia and their family members. Her research found that participants with early- to middle-stage dementia had increased communication with their caregivers, as well as improved overall quality of life. Their family members and caregivers reported a boost in feelings of social support, communication and self-esteem.”

 

Bill has Parkinson’s with dementia and spinal stenosis. He and I have always said that life is a musical for us at home 🎼. We sing songs together 🎤 and dance 🕺🏼. The social benefit of a chorus would be great, but he says he doesn’t want to do that. Oh, well.

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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.
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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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@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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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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@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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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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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?

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@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

Periodic Contributor

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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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

Periodic Contributor

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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@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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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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@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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@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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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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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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@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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@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
Newbie

I am trying to help out a person in our choir. I am trying to find ways to keep him/her in the choir because singing is so important for the brain. However, I never knew there were so many cognitive steps to following the music in the hymnal with the new songs. Nothing yet has worked out well... Larger print of the lyrics... a special notebook... line markers... all of the other choir members try to assist but is there anything else we have not tried that would keep this individual focused? The socializing and singing is so very important! Thank you!

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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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AARP Expert

@bw38618336  Dear Bengal -  thank you so much for sharing your thoughts.  Singing would only work if the person likes it!  And you are right.  There are very many other things and activities you can help a person with dementia engage in that can help them.  Person and family centered care is important to everyone but absolutely essential when you are caring for someone living with dementia.  You have to know what a person likes and doesn't like, wants or needs if you are going to be help the person with dementia.  Sometimes that isn't easy if they struggle with communicating or can't speak, but behaviors can often clue you in to what they don't like, even if their words fail them.  If they refuse to participate or they seem upset that can be a strong signal they don't like it.  The experience of frustration coming out as anger can be all too familiar to dementia caregivers!  But to your point that there are many things you can do  to improve the well-being of people living with dementia - I will mention a few.  I subscribe to the 5 pillars of brain heatlh to help people with dementia, their caregivers or anyone who wants to help maintain their minds stay sharp.   The 5 pillars are set forth below with examples  and suggestions. 

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Sarah Lenz Lock, AARP Expert Brain Health
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