Caring for someone with dementia / Alzheimer's

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

Thanks for the great idea, @colleenyoung. I think a specific discussion is warranted given the challenges dementia can present to caregivers.

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom’s caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife’s years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer’s Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

@weiskirch9219

I have been a care giver for my wife for the last 5 years. After reading about half of your letters, I can say I have gone through almost all of your problems. Finally, it started effecting my health and my blood pressure shot up to 200. I had to get her into a nice Silverado facility in Morton Grove Illinois. She seems happy there, but, I keep trying to find a way to help her. I used to have a very stressful job about 60 years ago. I contracted severe migraine headaches. My wife (at that time a top executive social worker) found a cure for migraines in a book by a doctor. It used a simple biofeedback exercise to warm the tips of the fingers. You simply concentrate on your finger tips, say a trigger word (any word will do) a few times and after a few seconds you feel tingling in your tips. A few seconds later you can feel your heart beat in your finger tips. It all takes a little over a minute. You did it two or three times a day. It takes about two weeks of practice to master the exercise. IT ACTUALLY CURED MY MIGRAINE'S . I have been doing these exercises for 60 years and no migraines. The medical reason it works is as follows: we all have an automatic fight or flight protective system in our bodies. During a dangerous situation the body automatically shifts blood away from normal to the hands and feet to fight or run away from danger. After the danger is over the blood rushes back to the brain and elsewhere in the body. This causes a migraine in SOME people. The exercises sort of smooth out the blood rush, stopping the migraine. I thought that since Dementia is caused by plaques and other material that cloud and plug up the synapses in the brain. I thought perhaps these exercises could help clear the brain. I have contacted all the major foundations and research people at migraine headache clinics to look up the names of people who have used the biofeedback exercises for years. Follow up to see if those people contracted dementia in their senior years. IF THEY DID NOT HAVE DEMENTIA, perhaps there could be a connection, and a possible preventative or cure. Unfortunately none of these agencies have the incentive to check this out. They would rather find a pill they can sell, than find a cure that could dissolve their trillion dollar industry. and their high paying jobs. We are actually getting ready to start an experimental program at my wife's nursing home. I hope it works. You should try the finger warming yourselves. what have you got to lose ? No one else has come up with a cure.

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Just concentrate on your finger tips for a minute or two and repeat your trigger word

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@alanm

I am primary caretaker for my wife. She is now in late stage alzhiemers. 15 years ago she was diagnosed with Minimal cognitive decline. I am 77 she is 78, Living at home with me. It has become difficult for me to get everything done because of the amount of time required for her care. I am thinking of hiring some one to be with her while I do outside necessary work. Any advise from someone who has been through this?

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The amount of pain dementia has caused families like yours is hard to put in words.  You can actually do something to help clarify whether the biofeedback finger warming exercises have any value,  Ask around among your friends and relatives,  if they ever heard of anyone who used the biofeedback method to stop migraines.
If you can locate one, ask them if they have ever contracted dementia in their later years.  If they did NOT ,   I need to know it,   because it will add to the evidence we need to pressure the big foundations and research clinics to do bigger studies.  If we can prove that there is something worthwhile here, we can help relieve some of the pain you have suffered. You can private message me.

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@alanm

I am primary caretaker for my wife. She is now in late stage alzhiemers. 15 years ago she was diagnosed with Minimal cognitive decline. I am 77 she is 78, Living at home with me. It has become difficult for me to get everything done because of the amount of time required for her care. I am thinking of hiring some one to be with her while I do outside necessary work. Any advise from someone who has been through this?

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Hi @weiskirch9219 please note that I removed your personal email address from your message above. We recommend not posting personal contact information on a public forum like Connect. We don't want you to get unwanted spam. A safer way to share personal contact information is to use the private message.
Here’s how to send a private message:
1. Click on the member’s name.
2. Click on Send Private Message.
3. Write your message.
4. Click Send message.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Does anyone have advice on how to deal with complete denial of memory loss? I am so afraid we will get past the point of being able to help if we wait until my husband can admit he has a problem. (Will he ever…?) I know he KNOWS he is forgetting things and is suffering from fears about his mental health, and a future of being a burden to me… but he WILL NOT speak to a doctor (or to me) about this. Twists conversations, too (since he can't remember exactly what was said) and holds grudges against our kids for things he is SURE they said (they didn't). I've never pointed out his memory losses to him so he sees me as a safe support… but I can't go on like this and watch him decline when there are people out there who could help him at this stage.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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My mother had vascular dementia and I became increasingly concerned as her mind failed. I contacted her primary care physician at Mayo Clinic and asked him if I should tell my mother that she had dementia. His reply: "Will that accomplish anything?" I decided it wouldn't because my mother would forget what I told her." However, I think she suspected her mental decline.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Hello @friendofmayo. Welcome to Mayo Clinic Connect!

Have concerns been addressed with your husbands physician?

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Here is what I did May 2015 after suspecting Dementia of some kind in my 83 year old husband:I typed a list of concerns such as getting lost while driving, severe short term memory loss,  unprovoked angry outbursts,  etc. Then at his next scheduled primary care physician appointment,  I gave this list to his PCP.  She immediately administered the mini mental test, which he failed, of course, a Brain CT Scan, blood work, x-ray, EKG, MRI of the brain and a neurologist consultation.All problems were ruled out except VASCULAR DEMENTIA.Without the documentation you are treading water.With the documented diagnosis, proper treatment was begun.  It has not been easy.  He was given a driving evaluation test which he failed.  He was tricked by me into exchanging his driver's license for an identification card.   He l o s this car keys. He threatened to shoot himself.   My daughter and her husband came and got the guns.He is flaming angry about his guns.*But he will not die by shooting himself!*He remains angry about his guns being gone.  My 54 year old daughter died  unexpectedly of acute inflammation of her heart, and for TWO long hours after her death all he could do was stomp, slam doors and swear and want his guns back. So the county Deputy Sheriff  is disabling his guns so they can be put back in the gun case .My daughter is dead. She leaves a husband, daughter and  her Granddaughters.  My husband (not her father) has escalating Vascular Dementia.   I am now beginning the process to take advantage of respite care.  The next hurdle/problem I am now facing is how do I get him to agree willingly to respite care??Please advise. 

Sent from Yahoo Mail on Android

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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First let me say how sorry I am that you find yourself in this situation. I don't profess to have an answer for you but I'll make this suggestion. Get in touch with your local alzhiemers association. Perhaps they can help you. Maybe a confrontation would be in order. It would be much like what one would do for a person who is in denial about a drug problem. Do not do it without help from a professional. You need to continue to be his safe support but the issue should be brought out in the open. Us guys never want to admit we have a problem so it is much easier to deny it. If he does have alzheimers. your relationship is going to change the change can start now. My wife is going on 15 years since the original diagnosis and is now 100% dependent on me. Let me stress the need to start with the local association. They can guide you. Keep in touch. Sorry to say there is no easy way.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Hi there, I found that when I came up against my husbands illness, his state of mind or headspace as I like to call, his mental capacity to acknowledge or accept what was going on, he was incapable, at first. New information had to be broken down into smaller chunks and my expectations had to be guided by the medical professionals. After having private talks with them to discuss what was going on in the house, they helped me navigate through what was a potential land mind. I quickly came to realise , I was the first person to go through this kind of thing. The medical professionals asked me questions, and offered suggestions and choices I could slowly get myself to consider and accept. It’s a process. Talk to people who can give you options, you’re not alone. That was such a relief for me to know. The more questions you ask, the better. Speak to your Carers Association as well. Have patience with yourself too. Each day of a Carer can be full of new challenges to consider, take good care of yourself in the meantime. Wishing you hope and clarity.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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mnina, you are so benefited by having doctors/professionals that are willing to work with you. Even after putting mom in memory care my sister and I seemed to know more about caring for Alzheimer's patients than the staff did. A simple change in medications by the pharmacist reviewing mom's case – and not checking for a UTI before changing the meds — led to mom getting sepsis and dying. If you get a chance, please share some of your suggestions to those who are here that struggle with their loved ones care.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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I don't know if this will help with your decision or not. This month marks 15 years of my Mom being diagnosed with Vascular dementia. I try very hard not to lie to her. It makes me crazy when others do because it just adds to her confusion. There have been just a few times over the years where she has asked if there is something wrong. We have talked about it. Sometimes it was very upsetting for her. Others not so much. Mostly there is worry about who will care for her. I reassure her. My suggestion to you is to think about talking to her about it if she asks. Walk her through your plan. Let her help with that plan if you can. If she doesn't ask then don't. Give your Mom what ever little piece of control/decisions she is capable of at this time. My personal observations with both my parents is that loss of control leads to anger. Even if they do know why. Though in our Mother's cases they don't remember why. Best of luck. Go with what you feel is best. You know your mom.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Good morning, I lived with my Grandmother during her illness of Dementia/Alzheimer’s, she would get glimpses of clarity, where she understood that her favourite granddaughter at times, appeared to be a stranger to her, she would phone my uncle and ask, who is this strange woman living here. When she had these moments of insight, it brought her eyes to water as she looked at my with great guilt. She knew she had no control over this but she felt guilt anyway. Those moments of insight passed as the disease took over. She did her best. As I, with what little I knew then. We have more resources now . Lack of control for my husband definitely brought on anger. Allowing him to make as many decisions, however small, helped, kept me from Taking Over Too Much and helped him settle. Each day I kept and still do a gratitude journal, to help me stay balanced in the toughest of seas. It helps keep my mind and eyes open to the good things, however few in each day. As a Carer, I try to stay strong, to know when to rest, walk for exercise and just sit and take some slow breaths. This is the most challenging chapter of my life. I wish you the best, one day at a time.

Liked by Kdawn, juani

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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I believe telling or not telling, talking or not talking about the issue, is it good or bad, depends a lot on the person. Some people are better prepared, have better personal resources to have a talk about them going on Alzheimer or other type of dementia. Some people are not, and they would only get anxious, stressed, which is not going to help their situation nor the planning ahead. I believe it depends a lot on the person and the stage of the disease. And in some way, they give us signals if they want to know or not and if they prefer just to rely on us to make decisions and guide them. I feel like that's happening with my mother. She's 88 and she comes from a very different generation. She is using some medications, doesn't ask what are they for, and at most I would tell her they are for improving her memory. If she realizes once a week that her memory is failing and bring the issue at our conversation, I try to be natural and tell her that it is true but it is only natural as we age. That would be it. I fear that if I go beyond that, she would get anxious and suffer for something she can't do anything about. It is something that protects me but also her. And it would be a conversation she would forget in an hour and in 4 more days we would be there again….I feel it is pointless to have that conversation. I have no relatives so there is no one else involved. But if there were, I believe I would try to do the same. I am lucky in that she's smart. And though that issue has not been talked about, a couple of years ago she took some measures that could probably be explained by her anticipation of something happening to her in this regard. Giving me a power attorney, making sure utilities are paid from her banking account, etc. That simplified a lot of things.
There is no one solution or strategy. The person, the context, the phase of the disease, people involved. It has to be a customized strategy. Health care providers should be able to help to think through this and develop the best strategy possible.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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To lie to your loved ones in this situation is tricky….I also try hard not to with my mom, but sometimes I realize it is the only way not to confuse her with complex explanations, or adding to her anxiety. Let's say she want to visit a cousin who's in an hospice. I know it could be very disturbing for her to see her cousin who she loves dearly in the present state. Her cousin is not able to keep a conversation, she is basically lost in her mind, and very little of what she was and shared with my mother is left. So when my mom proposes to go and visit her, I simply tell her that it is not allowed. She regrets that, she brings some memories of their relationship and then change the subject. I couldn't possible bear my mom's suffering seeing her cousin so ill or even just thinking and imagining that her cousin is so bad that she is beyond normal interactions. I don't want that image in her brain. If she asks for a pill she is taking, I give her half truths, not telling her that it is for her dementia but simply for improving her memory. Sorry. Perhaps what I am saying is too obvious. But at the beginning it was an issue. How much should I tell her, is it ok to lie to her, etc My first goal right now is avoiding stress, anxiety, worries, confusion. I wish I could say my first goal is reaching happiness, happy moments. But for now I just can concentrate in the basics.

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@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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I am caring for my husband too! I too would love to get advice and share experiences! Hope to find out I am doing the right things, this is such uncharted territory for us.

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