Introductions: Are you caring for someone with dementia?

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

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.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@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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Your situation sounds very much like mine. I wish she would talk less. Has always talked incessantly but now I can't hear most of what she says and don't understand what I do hear. Talk to you later.

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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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@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 @alanm. My dad was my Mom's primary caregiver till he passed (age 91) a year ago in October. She has had Vascular dementia for 14 years. First let me say thank you. You will never hear it enough. I am sure if your wife from 15 years ago would be so grateful. It is a duty, an honor, a burden, and outpouring of your love. Being her caregiver is all that and more. I am sure on reading that your thinking "of course I would care for her and it is not necessary to say thanks I'm her husband". True, but it is because she can't say. Things definitely get to the point where 1) you need some time away 2) it is safer, faster, and more efficient to not always take her with you, 3) she may be more comfortable at home. We found these things to be true in regards to my Mom. I have for the last 14 years spent most every Friday, saturday, and Sunday, several hours each day caring for her. Three years before my Dad passed away my older brother moved in with them in part to help. Once my dad died he was the one needing held during the week. I could not quite my job. I was already working long hours so I could take Fridays off to help. We had a other sibling who was helping 2 days a week, but she was not consistent, complained etc. So I set out on a search to find someone. There are a lot of business such as comfort keepers, Aging Better, and many others that have a CNA who will come in and be with your wife. The cost varies from about $15 to $30 depending on your area. If she needs skilled nursing it will be much more. I was lucky that I eventually found a private CNA. In my opinion that is a great way to go you pay less, and they actually take home more because there is no middle person. We lost her after 9 month. I currently have 2 different people coming but they are not CNA's. My mom doesn't need specialized care. She needs some to basically be with her. To help her bath, dress, eat and reminder her where the bathroom is when she needs it. A good place to start is go to your local Area on Aging. They should have a list of home health care providers. They may also have posting from people looking for part time in home health care. Also talk to your wife's doctor(s) and nurses. They may have some knowledge of people looking for these types of jobs. If there are senior centers check their bulletin boards. Interview a few agencies. Ask how much they charge and what they provide. I encourage you to get some one even if it is for a few hours a week. You need someone as a back up. What would you do if you get sick? You get the flu, you'll be at home but you need someone else caring for your wife so you don't pass it along......If you have friends ask them if they know anyone. Best of luck.

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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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Thanks, I,m sort of spinning my wheels right now. Thanks for your encouragement.

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@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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Good to know. Do you actually tap your fingertips or just think about them?

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@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?

Jump to this post

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.
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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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