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: Mild Cognitive Impairment (MCI) & Dementia Support Group.

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

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Profile picture for raebaby @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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Profile picture for Mary @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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Profile picture for Mary @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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Profile picture for ccccc @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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Profile picture for ccccc @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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No it’s a hard to have a loss of intimacy especially when in the first 25 years she never said no, and when the loving turns to abuse

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My wife is now at the point she can not remember small details. Such as recognizing a flashlight, or a blanket. I am now doing most of the cooking and housecleaning. Every time something is moved, she swears it has been stolen by one of the offspring who came to visit. She is nearly blind, and mistakes a garage for a motor home. It is hard. We are both 83, and I have many cancers and other issues. oldkarl

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Profile picture for donnajane @donnajane

Please join me in to this group. I am caring for my husband with early stages of dementia. He is constantly asking the same questions which can be nerve racking. He can still sit in a group and laugh and converse so many do not realize what is happening. He only drives in and around our area where he has lived since childhood. Never any distance. We play bridge and he amazes me how well he can play complicated hands. We exercise almost daily at a YMCA. He does do some yard work. He has started constantly itching his head, but I can see nothing. Wondering if a dematologist is needed to check.

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My husband hasn’t been diagnosed with anything yet, but I can relate to others not seeing his memory issues. Sometimes they do, but sometimes they don’t. I know they don’t think we are lying, but it is frustrating that they don’t get it. Are there prescriptions that help slow the progression of dementia?

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Profile picture for laughsloudly @laughsloudly

My husband hasn’t been diagnosed with anything yet, but I can relate to others not seeing his memory issues. Sometimes they do, but sometimes they don’t. I know they don’t think we are lying, but it is frustrating that they don’t get it. Are there prescriptions that help slow the progression of dementia?

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Aricept 5mg helped my husband for a year and was slowing benefits but after an increase to 10mg there was another significant improvement

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Profile picture for boppi @boppi

Aricept 5mg helped my husband for a year and was slowing benefits but after an increase to 10mg there was another significant improvement

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Thanks @boppie! Did Mayo diagnose your husband? How did they determine his diagnosis?

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