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.

@juani

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That’s ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english….I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts’cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom’s accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can’t bear her unjust treatment to this lady (it makes me furious). Also, I can’t imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to “normal” but I have to find a solution. Any ideas? any suggestions?

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@harriethodgson1

Wonderful!

Teresa

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@juani

This is my first time as a group follower and I am not very sure how does this work. Here it goes. I am caring for my mother. She is 88 years old, lives indepedently in her own apartment, alone. She has mixed dementia: alzheimer and micro vascular problems. She is experiencing the usual: memory loss, both short and long term, and some cognitive impairment. I have get accostumed to hear her stories and questions one time and another. That’s ok with me. But I am experiencing a problem with which I have no idea how to deal with. (sorry my english….I am a spanish speaking person). The problem is that she has begun to have problems with the lady that helps her at home one day each week. My mom is accusing her of stealing. Different kind of things. From money to little scissors, peanuts’cans or DVDs. This lady has worked with her for more than 20 years, she knows my mother very well and has huge patience with her and her style of asking for things. But this lady also has had a couple of episodes of money stealing, recognized by this lady and forgiven and forgotten. Though I am pretty sure that most if not all of my mom’s accusations are product of her imagination or a consequence of her problems to remember where she left things, it is possible (though very unlikely) that some of them could be truth. This lady works also at my home a couple of days. This issue has become a source of conflict and stress in my relationship with my mother. Though I understand my mother, I can’t bear her unjust treatment to this lady (it makes me furious). Also, I can’t imagine someone else helping my mother and taking her bossy style with how to do things at home. Not for long. And even if my mother accepted to come to live with me (which she has refused consistenly), I would have the problem at my home, because the same lady works with me. Yesterday night, after one of the episodes over the telephone, I felt so helpless that I even thought of taking my dogs and dissapear and go far away. Another city. Another place. Leave my mom all alone. I felt so overwhelmed that coping with the guilt of abandoning her seemed less troublesome to me than keeping on facing the whole challenge. Today, everything is back to “normal” but I have to find a solution. Any ideas? any suggestions?

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Hello @mtnview I am Scott and nice to e-meet you here at Connect! I am sorry to hear of your husband’s journey with Alzheimer’s. Caregiving is a huge challenge and one which has many of its own unique challenges. I was my wife’ primary caregiver for over 14 years and as I like to say “it was the only job I ever held where there was no employee manual and no advance training required.” It was just jump into the ocean and see how well you might be able to swim to the far shore!

You will find this group to be good listeners and very good at sharing ideas, hints, tricks, and suggestions. Caregiving, at least for me, was tremendously isolating and I found Connect to be a great tool to help break what isolation I could!

Lovely to have you here and feel free to ask any questions you might have! Over all do you feel like you are basically doing OK?

Strength, Courage, and Peace!

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First time on this site. Wife (79) has had dementia for about 6 years. Getting worse. Still remembers family and some friends but not all of them. Very small appetite but is holding steady the past few months. Have concerns about costs of providing care for her at home when needed. Anyone have info about what to expect in costs and can recommend a provider. Bob

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@12131209

First time on this site. Wife (79) has had dementia for about 6 years. Getting worse. Still remembers family and some friends but not all of them. Very small appetite but is holding steady the past few months. Have concerns about costs of providing care for her at home when needed. Anyone have info about what to expect in costs and can recommend a provider. Bob

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Welcome to Connect, Bob. I moved your message to the Caregivers group where you meet many others caring for spouses and parents with Alzheimer's,like @IndianaScott @lindabf @harriethodgson1 @juani @mnitchke @mnina and many more. You are not alone.

Bob, I encourage you to follow the Caregivers group here:
Join any of the discussions of interest to you.

Your concerns about the costs of providing care for your wife at home is a good topic to bring to the group — what to expect and how to find good help, etc. Do you have support workers or nurses coming to your home now to help you with her care?

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@12131209

First time on this site. Wife (79) has had dementia for about 6 years. Getting worse. Still remembers family and some friends but not all of them. Very small appetite but is holding steady the past few months. Have concerns about costs of providing care for her at home when needed. Anyone have info about what to expect in costs and can recommend a provider. Bob

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Hi @12131209 Nice to e-meet you here Bob. I am Scott and I was the primary caregiver for my wife for 14+ years while she battled brain cancer (at home) and was one of the secondary caregivers for my mother-in-law while she battled dementia (also at home). I am sorry to hear of the difficulties your wife is experiencing with this terrible disease and the journey you are on as a caregiver. It is a tough one for each of you.

Cost of care can vary by state, location, what supplemental insurances you might carry, etc. It also can vary according to what additional services might be needed or necessary in a home care environment. Sometimes care alternatives such as specialized facilities, can also come into play. These again can vary greatly by state and locations within a state. I know the care costs for support care were even different from city to city or city to suburbs.

One other significant issue can be costs of medicines, which again can be dependent on what coverages you have and if you are covered under private insurance, Medicare, Medicaid, supplemental policies, etc.

What area are you in? Also have you taken a close look at your medical coverage booklets to see what they describe when it comes to coverages, such as in-home aides, changes to your home if necessary, etc? Also there can be changes in what is covered if hospice care comes into play, both home hospice (which my wife chose) and hospice in a facility.

While I don't have a ton of answers, these questions might help get the conversation going in the right direction. I am happy to help with examples of at least what I had to cover for my wife and with my MIL.

Courage, strength, and peace!

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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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@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, Welcome to the Caregivers group. I moved your message to the main discussion to introduce you to other members caring for a partner, parent or loved one with Alzheimer's. In fact, Bob (@12131209) joined the group only yesterday with a very similar circumstance to your own. He is caring for his wife (79) and is asking about care at home, the costs and what to expect. Click VIEW & REPLY in the email notification and you'll be able to scroll through the previous messages and read about other members like @suzie2017 @mojo1965 @rmftucker @kmkm @macbeth and more.

Have you been taking care of all her needs on your own up to now, Alan?

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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 I am sorry to hear of your wife's medical journey. I am Scott and I was my wife's primary caregiver for 14 years. Although she had brain cancer, many of her symptoms were dementia-like and we, too, struggled with getting good help for her and to help me. You are right in saying caregiving can be all consuming.

I know each situation and location is unique in this regard, but in our case we tried a wide range of sources for help (advertising in the local newspaper, online, non-profits, for-profits, etc.) and finally discovered the best avenue for us was talking with the staff at our local hospice organization. They had the names of a few local folks who were either between assignments or were looking for extra hours of work. These folks far outstripped any of the other dozens we used from time to time. For us they were the best we found over the years.

Strength, courage, and peace!
Scott

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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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Alan – yes, no outside help in care of wife. Not a problem now, but I do about everything except no personal care which she is able to handle. Of course, like many others, take her every where we go. Her balance has gotten worse, is much slower in walking and other things, less appetite and getting frail. Doesn't talk as much as before as she claims to forget the subject she was going to make. Usually in good spirits and understands what is happening to her and what we are facing in the future. The best to you in your challenges in care.

Liked by Kdawn

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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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Indiana – your comments are appreciated. Good info and I had not thought of contacting hospice for potential names to assist. Will do it. The best of health to you and yours, Bob

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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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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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