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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.

joey333 | @joey333 | Jan 30, 2019

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.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 30, 2019

Hi @joey333, Hi @virginiatc
I want to add my welcome too. You'll see me popping in once in a while to help people connect, find relevant discussions and such.

Virginia, back pain and resulting degenerative disc issues are a reality for many as we age and the hard work of caregiving definitely becomes more challenging. If you ever want to talk with others about back issues, degenerative disc disease, stenosis etc., please check out the discussions in these 2 groups:
> Bones, Joints & Muscles https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
> Chronic Pain https://connect.mayoclinic.org/group/pain/

@debbraw's husband also has MCI. I know she will post to you both, but she just had knee replacement therapy. She'll be back soon.

Joey, you've come to the right place for support. In addition to this discussion, you may also be interested in these parts of Connect:
> Caregiver group > Caregiver for spouse with MCI (Mild cognitive impairment) https://connect.mayoclinic.org/discussion/caregiver-for-spouse-with-mci/
> Pages> Living with Mild Cognitive Impairment (MCI) https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/ (Blog)

Joey, what is your biggest challenge at the moment?

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1 reply
joey333 | @joey333 | Jan 30, 2019
In reply to @colleenyoung "Hi @joey333, Hi @virginiatc I want to add my welcome too. You'll see me popping in..." + (show)
@colleenyoung

Hi @joey333, Hi @virginiatc
I want to add my welcome too. You'll see me popping in once in a while to help people connect, find relevant discussions and such.

Virginia, back pain and resulting degenerative disc issues are a reality for many as we age and the hard work of caregiving definitely becomes more challenging. If you ever want to talk with others about back issues, degenerative disc disease, stenosis etc., please check out the discussions in these 2 groups:
> Bones, Joints & Muscles https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
> Chronic Pain https://connect.mayoclinic.org/group/pain/

@debbraw's husband also has MCI. I know she will post to you both, but she just had knee replacement therapy. She'll be back soon.

Joey, you've come to the right place for support. In addition to this discussion, you may also be interested in these parts of Connect:
> Caregiver group > Caregiver for spouse with MCI (Mild cognitive impairment) https://connect.mayoclinic.org/discussion/caregiver-for-spouse-with-mci/
> Pages> Living with Mild Cognitive Impairment (MCI) https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/ (Blog)

Joey, what is your biggest challenge at the moment?

Jump to this post

Shucks! I need to think about it! : ) We just came from the neurologist yesterday with the news from the MRI that his brain is normal and functioning. He had two sessions of three hour testing a few weeks back. The diagnosis is MCI. Honestly, for me, it doesn't seem mild! It has been scary and I feel like I have been up against such odds as he just didn't want me to bring it up ANYMORE! He had been to a neurologist previously who dismissed it. He wouldn't let me attend appointments. I need to finish in a bit as I need to run a few children across town . . .

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jan 30, 2019
In reply to @joey333 "Shucks! I need to think about it! : ) We just came from the neurologist yesterday..." + (show)
@joey333

Shucks! I need to think about it! : ) We just came from the neurologist yesterday with the news from the MRI that his brain is normal and functioning. He had two sessions of three hour testing a few weeks back. The diagnosis is MCI. Honestly, for me, it doesn't seem mild! It has been scary and I feel like I have been up against such odds as he just didn't want me to bring it up ANYMORE! He had been to a neurologist previously who dismissed it. He wouldn't let me attend appointments. I need to finish in a bit as I need to run a few children across town . . .

Jump to this post

Hi @joey333 I am Scott and it is nice to e-meet you here. Welcome to Mayo Connect. I am sorry to read of your husband’s diagnosis. It’s a tough one for sure. I was drawn to Connect for the support it offered me during the toughest of my caregiving days. It offered me comfort and assistance and I hope you find the same.

One of the early things I did was work with my wife to get the HIPPA forms filled out so our adult children and I could speak directly with her medical team. It was a significant help and alliviated a bunch of stress.

Is this something you think might help you?

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1 reply
joey333 | @joey333 | Jan 30, 2019
In reply to @IndianaScott "Hi @joey333 I am Scott and it is nice to e-meet you here. Welcome to Mayo..." + (show)
@IndianaScott

Hi @joey333 I am Scott and it is nice to e-meet you here. Welcome to Mayo Connect. I am sorry to read of your husband’s diagnosis. It’s a tough one for sure. I was drawn to Connect for the support it offered me during the toughest of my caregiving days. It offered me comfort and assistance and I hope you find the same.

One of the early things I did was work with my wife to get the HIPPA forms filled out so our adult children and I could speak directly with her medical team. It was a significant help and alliviated a bunch of stress.

Is this something you think might help you?

Jump to this post

Hi, Scott! It is a pleasure to meet you. : ) Yes, I think that would be helpful for me to do at this time, I think just for me and not the children at this point in time. I was looking at Mayo's website last evening and saw that it is possible that it could stay the same, improve or even go away? Does this happen very often?

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joey333 | @joey333 | Jan 30, 2019

Getting back to where I left off earlier. It would be helpful to have practical tips for every day living. He made two trips to the train station this morning as he had forgotten his wallet and phone the first time. This is an example of what I mean by our daily living being impacted. I don't think there is a day that we are not impacted in at least one, many times more than one way. Sometimes they are little ways that are not a big deal and others are more alarming.

REPLY
dianajane | @dianajane | Jan 30, 2019
In reply to @joey333 "Greetings, all! I just joined the community and I apologize if I am not going about..." + (show)
@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.

Jump to this post

@joey333 HI welcome to a great group. Praying for both of you. Wow you are both so young. Seek a support group in your community too. Church or city/county help should be a phone call away. I have found great help with an Alzheimer's group as my husband has Primary Progressive Aphasia non stroke related and Alzheimer's. One day at a time and don't forget to take care of You! God bless your family.

REPLY
1 reply
dianajane | @dianajane | Jan 30, 2019
In reply to @IndianaScott "Agreed, @dianajane a long journey. I know each patient with dementia is different, but in my..." + (show)
@IndianaScott

Agreed, @dianajane a long journey. I know each patient with dementia is different, but in my studying of this disease while I worked for the national Alzheimer’s Association I remember any change for a dementia patient most often caused a downward change in them. This was certainly true of my MIL with hers.

It is a tough road for our loved ones and us as caregivers.

Strength, courage, and peace

Jump to this post

@IndianaScott HI Thanks for the thoughts and yes change is stressful for patients with dementia

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joey333 | @joey333 | Jan 30, 2019
In reply to @dianajane "@joey333 HI welcome to a great group. Praying for both of you. Wow you are both..." + (show)
@dianajane

@joey333 HI welcome to a great group. Praying for both of you. Wow you are both so young. Seek a support group in your community too. Church or city/county help should be a phone call away. I have found great help with an Alzheimer's group as my husband has Primary Progressive Aphasia non stroke related and Alzheimer's. One day at a time and don't forget to take care of You! God bless your family.

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Thank you so very much for reaching out Diana! : ) Thank you, too, for your prayers! I am really looking forward to getting to know you all and sharing back and forth. It is nice to know the support community is here and that I am not alone.

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dianajane | @dianajane | Jan 31, 2019
In reply to @virginiatc "@dianajane, I am sorry you have to deal with those sleepless nights along with everything else...." + (show)
@virginiatc

@dianajane, I am sorry you have to deal with those sleepless nights along with everything else. The urinal is a great idea and one I may use when and if the time comes. I used a bed side commode for my mother when she was with me but I needed to transfer her and she was an almost complete lift. We perfected the transfer but I think it took its toll on my back. I think your husband may feel "lost" with this change. If it is a permanent move for him, I hope he makes an adjustment soon. I sure hope you are getting good sleep and taking care of yourself in spite of the worry. One day at a time.

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@virginiatc Hi. Yes I am getting better sleep at night which has made a big difference and my counseling/therapy twice a week has been very helpful. It is an adjustment for both patient and caregiver. Our children all married and over 50 have been very supportive. We are blessed.

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