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.

@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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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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@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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@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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@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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@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/

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@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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@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.

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@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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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?

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@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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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.

Liked by sallysue

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@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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Welcome to Connect, @grandmabus I’m glad your husband was able to attend daycare yesterday. Has he adjusted to the medication?
You can talk to your doctor about hospice to be prepared for the time when it comes.

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@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

He was able to attend daycare on Friday for the first time this past week and seemed to do okay there, however he is not adjusting to the medicine so I did not give it to him before going to daycare, he really is better without the new medicine.

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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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@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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My mother thought people were stealing from her, but it wasn’t true. Instead, my mother was misplacing things. She also lost the ability to differentiate an item, such as her black boots, from black clothing. To keep your mother calm, you may have to to hire someone else to help her.

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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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thank you Harriet for your response. And how did you manage her paranoia? were you able to find out a way to calm her suspiciousness of other people in her house?

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