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.

@tsoy

You are welcome. You can buy extra large bags @ Petsmart. I can get a brief and a bed pad in one bag. I hope together we can come up with many helpful ideas to make like easier.

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I am coming into this conversation rather late but it may help those with limited resources. I use the grocery store plastic bags that, I, and another save for this purpose, and tie it off. It is deposited in a closed trash can out in the garage. It works so far but only one or two pullups are being soiled a day as he still has some control of his eliminations. By the way, I was having to buy the pull ups but now I get them from the VA and they cover that expense and we are grateful. Another trick that may have been mentioned before I joined here is this. Men's shaving cream makes a wonderful soap applied to the private area when there is feces clinging to the hair. It seems to release better and make the experience easier on everyone. Smells better too. Of course, rinse it off completely. The money I saved for the bags, I have spent at Sam's to buy the big box of disposable gloves. Hope this helps someone who is reluctant to ask these sticky questions.

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@virginiatc

I am coming into this conversation rather late but it may help those with limited resources. I use the grocery store plastic bags that, I, and another save for this purpose, and tie it off. It is deposited in a closed trash can out in the garage. It works so far but only one or two pullups are being soiled a day as he still has some control of his eliminations. By the way, I was having to buy the pull ups but now I get them from the VA and they cover that expense and we are grateful. Another trick that may have been mentioned before I joined here is this. Men's shaving cream makes a wonderful soap applied to the private area when there is feces clinging to the hair. It seems to release better and make the experience easier on everyone. Smells better too. Of course, rinse it off completely. The money I saved for the bags, I have spent at Sam's to buy the big box of disposable gloves. Hope this helps someone who is reluctant to ask these sticky questions.

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@virginiatc hi thanks for the tips. I am caregiver for my husb. He was diagnosed with PPA, non stroke related so speech therapy was not successful. Alzheimer dementia has been manifesting itself rather quickly. He was falling and has bladder and prostrate issues. Up every 45 min. at nite to urinate, we were both getting no sleep as I was unable to allow him to get up alone. Ended up using a urinal so he stayed in bed and I did not have to help him up to get out of bed. I have back issues. He has been in nursing home for 3 weeks. It's not going well. Unable to communicate but was pleasant at home. Now he is a different person totally. Angry, not sleeping at night, wandering and Won't let anyone help him in case he falls. It is a long journey.

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@dianajane

@virginiatc hi thanks for the tips. I am caregiver for my husb. He was diagnosed with PPA, non stroke related so speech therapy was not successful. Alzheimer dementia has been manifesting itself rather quickly. He was falling and has bladder and prostrate issues. Up every 45 min. at nite to urinate, we were both getting no sleep as I was unable to allow him to get up alone. Ended up using a urinal so he stayed in bed and I did not have to help him up to get out of bed. I have back issues. He has been in nursing home for 3 weeks. It's not going well. Unable to communicate but was pleasant at home. Now he is a different person totally. Angry, not sleeping at night, wandering and Won't let anyone help him in case he falls. It is a long journey.

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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

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@dianajane

@virginiatc hi thanks for the tips. I am caregiver for my husb. He was diagnosed with PPA, non stroke related so speech therapy was not successful. Alzheimer dementia has been manifesting itself rather quickly. He was falling and has bladder and prostrate issues. Up every 45 min. at nite to urinate, we were both getting no sleep as I was unable to allow him to get up alone. Ended up using a urinal so he stayed in bed and I did not have to help him up to get out of bed. I have back issues. He has been in nursing home for 3 weeks. It's not going well. Unable to communicate but was pleasant at home. Now he is a different person totally. Angry, not sleeping at night, wandering and Won't let anyone help him in case he falls. It is a long journey.

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@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.

Liked by shortstrong

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@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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@virginia thanks for your thoughts. Haven't been able to go to see him for 2 days. We are in Michigan and road conditions and temps are keeping everyone home. Schools and businesses all closed. I've talked to him on phone, seems to understand why I am not there. I am trying to get a grip and I know he is being taken care of..

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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 @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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@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?

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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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@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 . . .

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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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@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?

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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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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.

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@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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@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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@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

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

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@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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@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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