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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.

mojo1965 | @mojo1965 | Oct 23, 2017
In reply to @mojo1965 "Hi there, After two years at home with caregivers, my mom and myself, my Dad is..." + (show)
@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

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Thank you so much for this!

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DianaODecatur | @dianaodecatur | Oct 23, 2017

IndianaScott: Can you give me some details on your MIL's road with Frontal Temporal Dementia? My husband was diagnosed 6 years ago (also in his 60's). I'm struggling with the aphasia - his ability to communicate is declining significantly and quickly. Thanks for any insight

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candacekay | @candacekay | Oct 23, 2017
In reply to @colleenyoung "@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow..." + (show)
@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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Hi Kdawn, Yes I do write down times when aides come for meals and when my sister and I are coming. I just feel at the moment Mom knows what she is reading but in a second she has forgotten. All conversations are the same repeating over and over. I sometimes wonder if less is more for her, but then again she will hit every question just perfect. I am sure that is how this disease works. I know that aides have a time getting her to take a shower and shampoo twice a week, is this normal?? She tells them OH my daughter is coming and will do it for me. Tricky !! hahah guess I just need to roll with the good times. Thanks for your advice!

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Kdawn | @kdawn32 | Oct 24, 2017
In reply to @colleenyoung "@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow..." + (show)
@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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I have trouble on and off with getting my mom to shower. You might suggest to them if she really doesn't want to do it to see if she is willing to do a wipe down/sponge bath. They might also try "that's great, don't you might to clean and pretty for your daughters? If we have you ready then they can spend more time visiting with you." It is a struggle. What works for a while will eventually stop working. We found out yesterday that my mom is going blind on top of her dementia and diabetes. You've got a pretty good attitude about rolling with it. Of course some days you just can't.

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Harriet Hodgson | @harriethodgson1 | Oct 24, 2017
In reply to @colleenyoung "@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow..." + (show)
@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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Showering can be a problem. Some people with dementia think they are going to drown if they take a bath or have a shower. When I was visiting my mother one day in nursing care, I walked past the shower room, where a woman was screaming, "I don't want to die! I don't want to die!" I felt so sorry for her.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 24, 2017
In reply to @colleenyoung "@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow..." + (show)
@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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Great tips and thoughts about bathing and showering. If anyone is interested in reading more about ideas from the community or adding your thoughts, you can also refer to this discussion in the Caregivers group
* Dementia Anger Issues - bathing: https://connect.mayoclinic.org/discussion/dementia-anger-issues-bathing/

REPLY
seamaiden | @seamaiden | Oct 24, 2017
In reply to @colleenyoung "@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow..." + (show)
@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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Yes, my brother-in-law was so afraid of water that he would start screaming as soon as they started to take him down the hall.

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Kdawn | @kdawn32 | Oct 24, 2017

@meg4434 To your question is there are specialized facilities for those with some type of dementia (Alzheimer's or otherwise), yes. They are likely to cost more than where your mother-in-law is now, but if she has a specific aide added at her current location the cost might end up as a wash. I took a quick look and there are several in NJ though I did not specifically look at your location. You might suggest to your husband (hopefully he can make his sister think it is her ideas) 😉 that an aide or a different home would be better. Warning the waiting list can be long. If you can find on there are facilities that have only 6-10 patients. These are often in a neighborhood and have in live-in care givers with additional aides etc that come in to add to the staff and relieve those who live on site. I wish your family luck. This is not easy for sure.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 2, 2017
In reply to @mojo1965 "Hi there, After two years at home with caregivers, my mom and myself, my Dad is..." + (show)
@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

Jump to this post

Welcome to Connect, @ginall Have you contacted hospice in your area to understand what services they offer? If yes, can you share what your experience was like?

How is your husband doing today?

REPLY
grandmabus | @grandmabus | Nov 3, 2017
In reply to @mojo1965 "Hi there, After two years at home with caregivers, my mom and myself, my Dad is..." + (show)
@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

Jump to this post

I have not contacted hospice, because I thought you have to have a doctor do that. My husband has had a terrible week, was not able to attend daycare on two days that he was scheduled to because of behavior at home. He wet all over the carpet one day, and then went back to bed and slept 4 hours. He did attend daycare today and seemed to do okay. Doctor recently gave us a new medicine to try and I think that was part of the problem. He does not adjust well to most medications. Can not even talk allergy medicine as it makes him hallucinate really bad. thanks for asking about him.

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