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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.

Scott R L | @scottrl | Nov 12, 2023
In reply to @fleetwoodiv "Unfortunately, I am not on Medicare as I always worked for the State of Illinois and..." + (show)
@fleetwoodiv

Unfortunately, I am not on Medicare as I always worked for the State of Illinois and didn't accumulate enough credits in Social Security to qualify. Instead, I have the same health insurance I had when I was working, which is actually better than Medicare, because it's free (no insurance premiums) -- a perk that Illinois offers or used to offer to retirees with more than 20 years of service. I don't know if there are other programs that are similar to Silver Sneakers for seniors, but I can do an Internet search. I thought maybe I could get in under my wife's eligibility, but they won't let me.

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Though I have no way of knowing, the benefits of wellness programs have been established, so I would imagine there's something available for you.

And there's always YouTube. Must be a zillion exercise videos out there.

Good luck!

REPLY
ultrajko | @ultrajko | Nov 13, 2023
In reply to @becsbuddy "@ultrajko Have you thought about changing to a geriatrician? I know you don’t want to change..." + (show)
@becsbuddy

@ultrajko Have you thought about changing to a geriatrician? I know you don’t want to change doctors, but seeing a geriatrician might be best for you and your wife. They are specialists in aging and would easily be able to discuss dementia. They might also know where you could find a part time nurse’s aide to help you.
I can sense that you are overwhelmed and stressed and having a caregiver for a few hours a week would allow you some time to take care of yourself.
What do you think?

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I would love to have her see a geriatrician but she thinks her doctor is her friend and no one else will do. She won't go to another doctor unless her "friend" schedules it and they no longer seem to be seriously interested in her deteriorating condition. It's like dealing with an unruly 4 year old you can't correct or reprimand!

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raebaby | @raebaby | Nov 13, 2023
In reply to @ultrajko "72 year old spouse continues rapid dementia decline. I try to keep things as even keel..." + (show)
@ultrajko

72 year old spouse continues rapid dementia decline. I try to keep things as even keel and "normal" as possible. She has taken to sleeping 12-16 hours at a time; is this normal? I would ask the doctor, but they are much too busy to deal with dementia questions since there is no cure and thus no money to be made! She has finally declined to the point of not fighting me quite so hard on taking her medications, but her personal hygiene and laundry is starting to be a problem. Just looking for ideas to help her and salvage my now destroyed retirement!

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My husband died with Parkinson's dementia. It is horribly hard to deal with no matter what you try to do to help.I was around your age when it started. After he died i had to be treated for breast cancer which I believe was at least partly due to stress.
If she wants to sleep, let her sleep. Her body actually repairs it's self whie sleeping and you get a break.

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1 reply
Mary | @fredflorida | Dec 8, 2023

My situation is perhaps easier than others, but it is hard still. Last year my husband of 50 years died. My children are living all over the country and I found myself alone. So I started going to a Senior Center and met a wonderful man there, who had early dementia, but I was unaware of that. We have been keeping company for 9 months now and his disability is more obvious now. What troubles me is that I cannot be the only one for him. His son does help out one day a week, but he was out of town last week. My friend drove (scary) over to see me and was very confused, not sure if he lives with me or what. I tried every day to call his son.. no response. I kept him here at my house for 3 days, washing his clothes, making him shower, etc. After that I was expecting out of state company and I had to ask him to go home. I finally reached one of his sons who lives across the country and he just said not to worry. He has no one but me and I am exhausted with both his parttime care and my own life. The local son feels that his dad is fine without anyone, but I know he is as lonely as I am too and I don't have dementia. I think they feel he would have been better off had he not met me, but he is happy with me and I with him. I am worried that I didn't have anyone to reply when I called. What if he has an accident driving? or heart attack? I am not responsible for his care, but I do care about him. Maybe there is no solution. It seems to be hard on his sons. Should I just stop seeing him? I think they may want me to let him be alone. The local son told me, "It's not your fault, but he is worse now because you have upset his schedule." Any thoughts?

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3 replies
Kim Webb | @mrjohnwebb | Dec 9, 2023
In reply to @fredflorida "My situation is perhaps easier than others, but it is hard still. Last year my husband..." + (show)
@fredflorida

My situation is perhaps easier than others, but it is hard still. Last year my husband of 50 years died. My children are living all over the country and I found myself alone. So I started going to a Senior Center and met a wonderful man there, who had early dementia, but I was unaware of that. We have been keeping company for 9 months now and his disability is more obvious now. What troubles me is that I cannot be the only one for him. His son does help out one day a week, but he was out of town last week. My friend drove (scary) over to see me and was very confused, not sure if he lives with me or what. I tried every day to call his son.. no response. I kept him here at my house for 3 days, washing his clothes, making him shower, etc. After that I was expecting out of state company and I had to ask him to go home. I finally reached one of his sons who lives across the country and he just said not to worry. He has no one but me and I am exhausted with both his parttime care and my own life. The local son feels that his dad is fine without anyone, but I know he is as lonely as I am too and I don't have dementia. I think they feel he would have been better off had he not met me, but he is happy with me and I with him. I am worried that I didn't have anyone to reply when I called. What if he has an accident driving? or heart attack? I am not responsible for his care, but I do care about him. Maybe there is no solution. It seems to be hard on his sons. Should I just stop seeing him? I think they may want me to let him be alone. The local son told me, "It's not your fault, but he is worse now because you have upset his schedule." Any thoughts?

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I'm truly sorry to hear about the difficulties you're facing. It sounds like a complex and emotionally challenging situation. It's clear that you care deeply for this man and want what's best for him, but you're also feeling the strain of managing his care alongside your own life.

Communication with his sons seems crucial. It might be beneficial to have a candid and compassionate conversation with them to express your concerns and discuss how to best support their father. Understanding their perspectives and finding a compromise that considers everyone's well-being could be helpful.

Consider seeking support from local senior care services or support groups that specialize in dementia care. They might offer advice, resources, or assistance to help lighten the load and ensure the best care for him while considering your own well-being.

Ultimately, the decision to continue the relationship or not is deeply personal. It might be worth considering options that prioritize both your needs and his well-being. Remember, it's okay to seek help and support for yourself during this challenging time.

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ccccc | @ccccc | Jan 4 5:24pm

Any input as to handle the loss of intimacy with your spouse? Or do you just no longer have that?

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2 replies
bunzman | @bunzman | Jan 6 1:53pm
In reply to @raebaby "My husband died with Parkinson's dementia. It is horribly hard to deal with no matter what..." + (show)
@raebaby

My husband died with Parkinson's dementia. It is horribly hard to deal with no matter what you try to do to help.I was around your age when it started. After he died i had to be treated for breast cancer which I believe was at least partly due to stress.
If she wants to sleep, let her sleep. Her body actually repairs it's self whie sleeping and you get a break.

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Not sure about the sleeping at age 72; although if you really think her doctor doesn't care, then seek a change and not accept that he/she is just part of an entire group not to be trusted. I care for a 93 yr old mom w/ Alzheimers (sleeps maybe 2 hrs throughout the day when we are n ot doing exercises or she is working in a word book) and decided that once we can no longer ensure maintaining her hygeine I'd look to institutional care as they are often better equipped to handle that. Plus as someone loses their connection to you the emotiional impact of letting go for them and you can be less...Good luck.

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oldkarl | @oldkarl | Jan 7 10:58am
In reply to @fredflorida "My situation is perhaps easier than others, but it is hard still. Last year my husband..." + (show)
@fredflorida

My situation is perhaps easier than others, but it is hard still. Last year my husband of 50 years died. My children are living all over the country and I found myself alone. So I started going to a Senior Center and met a wonderful man there, who had early dementia, but I was unaware of that. We have been keeping company for 9 months now and his disability is more obvious now. What troubles me is that I cannot be the only one for him. His son does help out one day a week, but he was out of town last week. My friend drove (scary) over to see me and was very confused, not sure if he lives with me or what. I tried every day to call his son.. no response. I kept him here at my house for 3 days, washing his clothes, making him shower, etc. After that I was expecting out of state company and I had to ask him to go home. I finally reached one of his sons who lives across the country and he just said not to worry. He has no one but me and I am exhausted with both his parttime care and my own life. The local son feels that his dad is fine without anyone, but I know he is as lonely as I am too and I don't have dementia. I think they feel he would have been better off had he not met me, but he is happy with me and I with him. I am worried that I didn't have anyone to reply when I called. What if he has an accident driving? or heart attack? I am not responsible for his care, but I do care about him. Maybe there is no solution. It seems to be hard on his sons. Should I just stop seeing him? I think they may want me to let him be alone. The local son told me, "It's not your fault, but he is worse now because you have upset his schedule." Any thoughts?

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My situation is some different, but still the same in many ways. My wife of 64 years has serious dementia, and I am trying to learn to cope. It is not easy, as you know. This morning my wife could not find the bathroom. She complains constantly that I will not let her drive. And I am dying of several cancers, multiple myeloma, diabetes, LGMD(r2383) and other diseases. Probably this year. Anyway, no advice to give. Just know you are not alone. oldkarl

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ndclayt41 | @ndclayt41 | Jan 7 1:27pm
In reply to @fredflorida "My situation is perhaps easier than others, but it is hard still. Last year my husband..." + (show)
@fredflorida

My situation is perhaps easier than others, but it is hard still. Last year my husband of 50 years died. My children are living all over the country and I found myself alone. So I started going to a Senior Center and met a wonderful man there, who had early dementia, but I was unaware of that. We have been keeping company for 9 months now and his disability is more obvious now. What troubles me is that I cannot be the only one for him. His son does help out one day a week, but he was out of town last week. My friend drove (scary) over to see me and was very confused, not sure if he lives with me or what. I tried every day to call his son.. no response. I kept him here at my house for 3 days, washing his clothes, making him shower, etc. After that I was expecting out of state company and I had to ask him to go home. I finally reached one of his sons who lives across the country and he just said not to worry. He has no one but me and I am exhausted with both his parttime care and my own life. The local son feels that his dad is fine without anyone, but I know he is as lonely as I am too and I don't have dementia. I think they feel he would have been better off had he not met me, but he is happy with me and I with him. I am worried that I didn't have anyone to reply when I called. What if he has an accident driving? or heart attack? I am not responsible for his care, but I do care about him. Maybe there is no solution. It seems to be hard on his sons. Should I just stop seeing him? I think they may want me to let him be alone. The local son told me, "It's not your fault, but he is worse now because you have upset his schedule." Any thoughts?

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My wife has dementia she is 70 she was told years ago by her Dr. she couldn’t drive safely anymore and luckily that’s all it took. I’m a 14 year cancer survivor and even though it’s been 14 years I still receive yearly checkups so sometimes I have to leave my wife alone. When I come home she has moved all kinds of stuff because she lonely, and we do take daily bike rides or drives in the car and she always waving or trying to talk to people.
Just because they have a dementia or any disease doesn’t mean they are better off alone even if it just watching tv

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13 2:37pm
In reply to @ccccc "Any input as to handle the loss of intimacy with your spouse? Or do you just..." + (show)
@ccccc

Any input as to handle the loss of intimacy with your spouse? Or do you just no longer have that?

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Such a great question, @ccccc. I encourage you to start a new discussion on the topic.

In the meantime, you might also be interested in this blog post by Dr. Locke, Mayo Clinic:
- Intimacy and memory problems https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/intimacy-and-memory-problems/

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