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 group and 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.

@joey333

Greetings, all! I just joined the community and I apologize if I am not going about introducing myself the right way. My name is Joey and my husband, Tom, and I live in Northern Virginia with our family. We have eight children. The eldest is married with two little ones and our youngest is seven. I will be 50 in the spring while Tom turned 60 last summer. For the past few years I have watched/observed/worried as Tom's memory has declined. He was just diagnosed with MCI. I am grateful as it gives me the ability to speak with him about it and to talk about solutions and daily living helps. It has been challenging. It impacts our daily lives. I would really like to be able to communicate with others regarding what we are going through. Initially, I thought I just wanted helpful ideas for managing our lives/helpful ideas to assist him in daily living. But, I think it would be nice to have personal support as well.

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Hi Joey. My name is Connie and my husband is Roy. He was diagnosed with MCI some 4 years ago, and I appreciate your ability to communicate with him about what's happening. That has made a lot of difference for me and Roy. It is particularly good because the rest of our lives will be different than what we had planned several years ago. We need to make arrangements for later, because right now Roy is aware of what he does and does not want. There 's some really good stuff available on that with Alzheimer's association. Just as you, I thought I wanted to just know more about the disease and what I could do to make it easier for us both. However, now I know that I need personal support more frequently. It is so wonderful to hear once in a while — you did just right, or that was the right decision Connie, and it's OK to do some for yourself…take care or I will be in trouble, as I am seeing stress/pain in my back and elsewhere. Keep talking and keep knowing that you are doing the very best you can with what you have at this particular moment.

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@cseichepine

Hi Joey. My name is Connie and my husband is Roy. He was diagnosed with MCI some 4 years ago, and I appreciate your ability to communicate with him about what's happening. That has made a lot of difference for me and Roy. It is particularly good because the rest of our lives will be different than what we had planned several years ago. We need to make arrangements for later, because right now Roy is aware of what he does and does not want. There 's some really good stuff available on that with Alzheimer's association. Just as you, I thought I wanted to just know more about the disease and what I could do to make it easier for us both. However, now I know that I need personal support more frequently. It is so wonderful to hear once in a while — you did just right, or that was the right decision Connie, and it's OK to do some for yourself…take care or I will be in trouble, as I am seeing stress/pain in my back and elsewhere. Keep talking and keep knowing that you are doing the very best you can with what you have at this particular moment.

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Connie – thank you so very much for reaching out to me. : ) I feel a bit confused as I read on Mayo's site that MCI can go away, or can stay the same, perhaps get better. Do you move forward, as a couple, assuming the worst, or do you hold out in hope for improvement? I personally, have been watching (not so silently – bringing it up to him, to family members) the changes for the past number of years. I will take a look at the Alzheimer's association for the future as you have suggested. But, if I may ask, what sorts of things are you guys deciding on?

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Hi @joey333 I know your question was directed elsewhere, but wanted to add what my wife and I did as her cognition became more impaired. A lot of our discussions were the result of what we witnessed with her folks, when they didn’t have similar discussions.

My wife, as difficult as it was at times decided on HIPPA permissions, advance directives, living will, POA, her final arrangement desires, she even planned her music and celebration. We also discussed and made several estate/will decisions for our children and real estate.

As our time together got more and more medically challenging this made those times easier since many decisions had been made and made by her. It alliviated a ton of doubt and second guessing.

Strength, courage, and peace!

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@IndianaScott

Hi @joey333 I know your question was directed elsewhere, but wanted to add what my wife and I did as her cognition became more impaired. A lot of our discussions were the result of what we witnessed with her folks, when they didn’t have similar discussions.

My wife, as difficult as it was at times decided on HIPPA permissions, advance directives, living will, POA, her final arrangement desires, she even planned her music and celebration. We also discussed and made several estate/will decisions for our children and real estate.

As our time together got more and more medically challenging this made those times easier since many decisions had been made and made by her. It alliviated a ton of doubt and second guessing.

Strength, courage, and peace!

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I want to add that, we did that too, several years ago. Even picked things out and pre-paid a funeral. I am so thankful we did that much ahead of the need. The more open we were, we felt would alleviate any doubt about our wishes from our family. Better have it done sooner than later, in my book. We will all be leaving this beautiful earth and it won't be on our time schedule and it is so easy to put off facing getting things in order.

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@IndianaScott

Hi @joey333 I know your question was directed elsewhere, but wanted to add what my wife and I did as her cognition became more impaired. A lot of our discussions were the result of what we witnessed with her folks, when they didn’t have similar discussions.

My wife, as difficult as it was at times decided on HIPPA permissions, advance directives, living will, POA, her final arrangement desires, she even planned her music and celebration. We also discussed and made several estate/will decisions for our children and real estate.

As our time together got more and more medically challenging this made those times easier since many decisions had been made and made by her. It alliviated a ton of doubt and second guessing.

Strength, courage, and peace!

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Thanks so much for your reply, Scott. : ) I feel concerned when I read your reply as well as Virginia's. Tom is just 60 and aside from the diagnosis of MCI is very healthy. Is there something I don't know about? Does this shorten his lifespan? I have watched his memory decline over the past few years and we finally have this diagnosis. But, am I missing something? Will this go faster from here, is there not hope for recovery – please be forthright with what you know and help me to understand. Thank you! : ) Joey

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@joey333

Thanks so much for your reply, Scott. : ) I feel concerned when I read your reply as well as Virginia's. Tom is just 60 and aside from the diagnosis of MCI is very healthy. Is there something I don't know about? Does this shorten his lifespan? I have watched his memory decline over the past few years and we finally have this diagnosis. But, am I missing something? Will this go faster from here, is there not hope for recovery – please be forthright with what you know and help me to understand. Thank you! : ) Joey

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Good morning @joey333 I certainly did not mean to alarm, rather thought ‘forewarned is forearmed’.

Our decision came after watching my family of origin fall apart due to my parents planning only verbally and seeing something similar with my wife’s siblings due to poorly written planning and then trying to decide how to address some unrealistic deathbed requests made.

Any of us could get hit by a bus tomorrow so it is best to plan. Also in the case of my wife we knew her cognition was at risk so we wanted to do as much as we could to avoid the destruction she saw in our families by not planning adequately. Additionally my wife actually enjoyed personally handing certain items of importance of hers into the hands of a few folks.

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@joey333 Good morning to all. I am also sorry to alarm you. Scott's message is in line with mine. We plan for the inevitable and then when that is taken care of, we get down to the business of living our best.

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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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Any advice is good advice for me right now

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@IndianaScott

Good morning @joey333 I certainly did not mean to alarm, rather thought ‘forewarned is forearmed’.

Our decision came after watching my family of origin fall apart due to my parents planning only verbally and seeing something similar with my wife’s siblings due to poorly written planning and then trying to decide how to address some unrealistic deathbed requests made.

Any of us could get hit by a bus tomorrow so it is best to plan. Also in the case of my wife we knew her cognition was at risk so we wanted to do as much as we could to avoid the destruction she saw in our families by not planning adequately. Additionally my wife actually enjoyed personally handing certain items of importance of hers into the hands of a few folks.

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Thanks so much, Scott! : ) I will definitely speak with Tom about it and I am really glad you shared the information and your family experiences with me.

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@virginiatc

@joey333 Good morning to all. I am also sorry to alarm you. Scott's message is in line with mine. We plan for the inevitable and then when that is taken care of, we get down to the business of living our best.

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Thanks, Virginia . . . it is just that my family has been in denial for so long and I have been the only one pushing, hoping for a diagnosis of some sort to understand what we are dealing with. Also, then with learning the initial diagnosis of MCI, hoping that it could remain that way after what I read. But, all is in God's hands. I hope and pray for a miracle, which, of course, He will do, if it is what is best for us – I trust this and in Him.

I am trying to educate myself, here and there, amid our busy family life, with trusted websites like Mayo. I do want to be best prepared for what may lie ahead. I am grateful for the information you guys have shared. I just have to figure how I will bring it up with Tom.

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@joey333

Thanks, Virginia . . . it is just that my family has been in denial for so long and I have been the only one pushing, hoping for a diagnosis of some sort to understand what we are dealing with. Also, then with learning the initial diagnosis of MCI, hoping that it could remain that way after what I read. But, all is in God's hands. I hope and pray for a miracle, which, of course, He will do, if it is what is best for us – I trust this and in Him.

I am trying to educate myself, here and there, amid our busy family life, with trusted websites like Mayo. I do want to be best prepared for what may lie ahead. I am grateful for the information you guys have shared. I just have to figure how I will bring it up with Tom.

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@joey333 Feel free to use my family as an example of 'a story you heard somewhere' if it helps.

Strength, courage, and peace!

Liked by joey333

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@joey333

Thanks, Virginia . . . it is just that my family has been in denial for so long and I have been the only one pushing, hoping for a diagnosis of some sort to understand what we are dealing with. Also, then with learning the initial diagnosis of MCI, hoping that it could remain that way after what I read. But, all is in God's hands. I hope and pray for a miracle, which, of course, He will do, if it is what is best for us – I trust this and in Him.

I am trying to educate myself, here and there, amid our busy family life, with trusted websites like Mayo. I do want to be best prepared for what may lie ahead. I am grateful for the information you guys have shared. I just have to figure how I will bring it up with Tom.

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You are welcome, Joey333. All of us who find themselves facing what you have described, came to the conclusion that something was not right and we were filled with a lot of uncertainty. And of course having faith that God is helping us gives us assurance that we will not be alone in the final stretch of this marathon. We take what we do know about how things are progressing and make some changes so we aren't as stressed. We stay with trusted doctors and try to educate ourselves like you are doing. No one can be sure of the time frame, and wouldn't it be wonderful if he stays at MCI or improves! My husband was very physically fit, he was a runner who ate a balanced diet, was not overweight. That was about 15 years ago. Since that time things have very gradually changed to the point he is still without any other health issues but his mind. He remembers very little about what has happened in the last part of his life. I remind him of wonderful things we did in the active years of our life together. He smiles like he remembers but I can't say he does as he never adds anything to the conversation. I took over all the financial handling of our life, plus all the physical work of having a home, and he was relived that I did. He was making errors in the checking account, something he would not do before. His decisions were turning into disaster. He gave up golfing and also driving a car so we went from a two car family to one. My smartly dressed, squeaky clean man became one who did not bathe or brush his teeth. Outsiders did not know how much or for how long I have been helping him with those things. He was able to have conversations with them so they thought everything was great. But when the filter was missing in his conversations with others or in his behavior in social settings turned bad, our children could not ignore what was happening. I could write a book on this but I do not want to do that here. What works for me – I love my husband(he is the same flesh that I married) and with every day I see him smile and sometimes out of the clear hear the word "thank you", I know I can go another day in this role. One day at a time. Bless you and all who are on this site for support and bless the volunteer mentors for not giving up on us. Virginia

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@bdrupp

Any advice is good advice for me right now

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Hi @bdrupp, I think I read in another post that you, too, are caring for a husband who has Alzheimer's? How are you doing?

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@virginiatc

You are welcome, Joey333. All of us who find themselves facing what you have described, came to the conclusion that something was not right and we were filled with a lot of uncertainty. And of course having faith that God is helping us gives us assurance that we will not be alone in the final stretch of this marathon. We take what we do know about how things are progressing and make some changes so we aren't as stressed. We stay with trusted doctors and try to educate ourselves like you are doing. No one can be sure of the time frame, and wouldn't it be wonderful if he stays at MCI or improves! My husband was very physically fit, he was a runner who ate a balanced diet, was not overweight. That was about 15 years ago. Since that time things have very gradually changed to the point he is still without any other health issues but his mind. He remembers very little about what has happened in the last part of his life. I remind him of wonderful things we did in the active years of our life together. He smiles like he remembers but I can't say he does as he never adds anything to the conversation. I took over all the financial handling of our life, plus all the physical work of having a home, and he was relived that I did. He was making errors in the checking account, something he would not do before. His decisions were turning into disaster. He gave up golfing and also driving a car so we went from a two car family to one. My smartly dressed, squeaky clean man became one who did not bathe or brush his teeth. Outsiders did not know how much or for how long I have been helping him with those things. He was able to have conversations with them so they thought everything was great. But when the filter was missing in his conversations with others or in his behavior in social settings turned bad, our children could not ignore what was happening. I could write a book on this but I do not want to do that here. What works for me – I love my husband(he is the same flesh that I married) and with every day I see him smile and sometimes out of the clear hear the word "thank you", I know I can go another day in this role. One day at a time. Bless you and all who are on this site for support and bless the volunteer mentors for not giving up on us. Virginia

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Thank you, Virginia, for sharing your story with me. I am touched at your tenderness and your willingness to share with me and also filled with compassion for you and your dear husband and your daily walk. It seems surreal to think that we could be there someday . . . especially given that Daddy is the sole breadwinner and we still have six children under the roof. Our youngest just turned seven.

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@IndianaScott

@joey333 Feel free to use my family as an example of 'a story you heard somewhere' if it helps.

Strength, courage, and peace!

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Thank you, Scott, I appreciate it – that's a very good idea. : ) I had one of our teens at the family doctor the other day and mentioned Tom's diagnosis. I told him what I saw with regard to MCI not always progressing to dementia (only 50% or so). He didn't look as hopeful and said it is more like 60%. So, we just wait and see? Is that what all of you guys had to do as well? Tom doesn't have any family history of dementia (that we know of), but the neurologist said it could start with him.

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