1. < Caregivers: Dementia

Harmful to point out the gravity of my wife's memory problems?

Posted by pcetng0202 @pcetng0202, 4 days ago

My first post. First, heart goes out to those with far graver concerns than mine. I have watched my wife's short-term memory disintegrate over the last six months. I am coping reasonably well but concerned that she dismisses the problem as "old age" (refusing to acknowledge that neurologist's verdict and brain scans show it's much more than that). It has interfered with my efforts at maintaining her schedules of medications, appointments, obligations, etc. but she views my gentle guidance as "control" and loss of autonomy. I do not want to hurt her or to incite conflict or to have her think that my love for her has been diminished. Any guidance from those ore experienced than I will be appreciated.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

celia16 | @celia16 | 3 days ago
In reply to @windyshores "Dementia can be a qualifying diagnosis for hospice, under certain conditions. Our local hospice does an..." + (show)
@windyshores

Dementia can be a qualifying diagnosis for hospice, under certain conditions. Our local hospice does an evaluation. They also offer palliative care (nurse visits but no aide) and "bridge to hospice." I did suspect that with the kind of complex but not imminently life-threatening medical conditions that the very elderly have, dementia might be used as the simplest diagnosis for hospice Medicare when the picture is complex.

I volunteered briefly for our local hospice and all my patients were on for dementia.

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Thank you. I keep hearing that a person with dementia who is still able to walk, even though barely with support and walker, won’t qualify. Think I’ll reach out to a local agency.

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2 replies
windyshores | @windyshores | 3 days ago
In reply to @celia16 "Thank you. I keep hearing that a person with dementia who is still able to walk,..." + (show)
@celia16

Thank you. I keep hearing that a person with dementia who is still able to walk, even though barely with support and walker, won’t qualify. Think I’ll reach out to a local agency.

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My mother could still walk!

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pcetng0202 | @pcetng0202 | 3 days ago
In reply to @windyshores "@pcetng0202 many people in my in-person support group had difficulties leaving their spouse or loved one...." + (show)
@windyshores

@pcetng0202 many people in my in-person support group had difficulties leaving their spouse or loved one. Our group leader warned us that we might be caregiving for many years and needed to also save ourselves. I ended up spending 8 years when I expected less. I was grateful for the advice.

Your local senior center, council on aging, elder services organization may be able to provide advice on how to have someone come to give you a chance to leave. I actually had a job years ago with a 93 year old woman, mainly to take her out to lunch. Some organizations provide volunteers (the "Village" movement here in MA). I continued tai chi and art class and I believe it saved my life. And an in-person support group with a leader who advised me for all those years.

Our local council on aging provides dementia training and a "dementia friends" program locally. Hospice volunteer programs also hold courses on how best to handle dementia. We also have "Memory cafe's where both caregiver and cared for person attend. I participated in that.

There are a lot of resources, including books! Art and music are also really helpful to the person with dementia. You could take classes together! Getting out of the house is a hard priority to have as a caregiver, but I was told often the stress and isolation mean the caregiver dies first.

My mother qualified for hospice based on dementia alone, which provided free aides 5 days a week , a volunteer to spell me, a social worker, nurse and chaplain. We used hospice for 3 years. You are not there yet, not at all, but I mention that as a resource that is underused due to the connotation of the word "hospice."

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Very wise words. I've already reacted by making a list of local in-person and virtual possibilities. Still grappling with the problem of alone time to pursue, given my wife's sense of guilt and anxiety, likelihood of feeling "abandoned." Doing what I can to take care of myself while expending most of my energies on helping her. As Scott mentioned in his follow-up, each case is special and no formula has guarantees. Thanks for mention hospice as a future recourse.

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pamela78 | @pamela78 | 3 days ago
In reply to @pcetng0202 "Thanks to you and all who who replied, from varied perspectives, with insights I found valuable...." + (show)
@pcetng0202

Thanks to you and all who who replied, from varied perspectives, with insights I found valuable. My mood is already a bit lighter today and I am determined as a result of the counsel to interact in a low-key manner, to emphasize that my guidance is to ease the complexities of life inflicted by our mutual ageing and societal change, and to remind mt wife that we have a loving devotion to each other.
I cannot engage in a personal support group because my wife becomes anxious when I leave home and I worry as well. So my absences are few, brief, and necessary. We have supportive visits and communications from time to time, but deaths and distances have diminished the number. Yet Mayo Connect (and the Mayo book Day to Day Living with Dementia)
may fill the bill. I'll also search for The #6 Hour Day. Bless you all.

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I think the hardest thing is feeling trapped. I can still leave my husband at home alone and he still goes out alone to his favorite coffee shop and the library, but when I leave the house, he waits anxiously for my return and I feel anxious too, the way you do when you leave a baby or toddler at home. You know they're okay but you also know they miss you and want you to come home. This isn't so terrible really, but day after day the isolation builds and I sink further into a depression I work to hide. I'm on antidepressants and have a best friend with whom I can share my woes, but it's hard. It just is. Love has nothing to do with it. Of course, I love my husband but he isn't the same person he used to be and I miss him. It's hard to feel alone with someone you've been married to for 25 years.

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judimahoney | @judimahoney | 2 days ago
In reply to @pcetng0202 "Thanks to you and all who who replied, from varied perspectives, with insights I found valuable...." + (show)
@pcetng0202

Thanks to you and all who who replied, from varied perspectives, with insights I found valuable. My mood is already a bit lighter today and I am determined as a result of the counsel to interact in a low-key manner, to emphasize that my guidance is to ease the complexities of life inflicted by our mutual ageing and societal change, and to remind mt wife that we have a loving devotion to each other.
I cannot engage in a personal support group because my wife becomes anxious when I leave home and I worry as well. So my absences are few, brief, and necessary. We have supportive visits and communications from time to time, but deaths and distances have diminished the number. Yet Mayo Connect (and the Mayo book Day to Day Living with Dementia)
may fill the bill. I'll also search for The #6 Hour Day. Bless you all.

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Hi: our medical facility offers a monthly dementia support group, and I bring my husband along. He likes to attend because they feed us lunch, however he does not interact. Hopefully you can bring your spouse along so you can get the benefit and she won't be alone.
I learned the word anosognosia on this site, meaning no self awareness. My husband is anosognostic, he doesn't realize he has any issues, which makes certain things harder since he's in disbelief or denial. Taking away his driving privileges due to safety concerns, and taking away his credit and debit cards due to misuse, caused major arguments. It was painful for me to have to do those things, and so confusing for my husband.
I'm not sure there is an easy way to make transitions.
Hope things go fairly well for you as you navigate the changes. Hugs, Judi

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1 reply
celia16 | @celia16 | 2 days ago

Reading this thread caused me to remember two episodes of 60 Minutes on CBS that featured caregivers to a family members with dementia. They return years later to give an update on what has happened in the home and it was quite interesting. I don’t have a link, but it’s probably available on you tube or CBS website archives. It’s from at least 6 years ago.

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bclane | @bclane | 1 day ago

Many years ago I was a nurse on a geriatric psych unit. Some patients were middle-aged, but most were older and they'd had psych diagnoses for a long time. Some would buck up and try to assert control about things like whether or not they'd take their medicine. When one refused, the thing that worked best was just to say, "okay. When you're ready, just come back and tell me." It was rare that one never came back for it. All they wanted was just to assert some control over their life. With one person in a more intimate environment, it might work to say something like, "Do you want to take your meds now or after you (fill in the blank with "eat, have coffee, shower," whatever activity might be coming up)."

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pcetng0202 | @pcetng0202 | 13 hours ago
In reply to @judimahoney "Hi: our medical facility offers a monthly dementia support group, and I bring my husband along...." + (show)
@judimahoney

Hi: our medical facility offers a monthly dementia support group, and I bring my husband along. He likes to attend because they feed us lunch, however he does not interact. Hopefully you can bring your spouse along so you can get the benefit and she won't be alone.
I learned the word anosognosia on this site, meaning no self awareness. My husband is anosognostic, he doesn't realize he has any issues, which makes certain things harder since he's in disbelief or denial. Taking away his driving privileges due to safety concerns, and taking away his credit and debit cards due to misuse, caused major arguments. It was painful for me to have to do those things, and so confusing for my husband.
I'm not sure there is an easy way to make transitions.
Hope things go fairly well for you as you navigate the changes. Hugs, Judi

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Thanks for introducing the little known concept of anosognosia.

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1 reply
windyshores | @windyshores | 7 hours ago
In reply to @pcetng0202 "Thanks for introducing the little known concept of anosognosia." + (show)
@pcetng0202

Thanks for introducing the little known concept of anosognosia.

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I mentioned lack of awareness and didn't use the technical word. Anosognosia makes the whole thing a lot harder. They think they can still do things and don't understand they need help. Pride persists and can easily be wounded. Etc.

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Springsong | @sculptr | 1 hour ago
In reply to @celia16 "Thank you. I keep hearing that a person with dementia who is still able to walk,..." + (show)
@celia16

Thank you. I keep hearing that a person with dementia who is still able to walk, even though barely with support and walker, won’t qualify. Think I’ll reach out to a local agency.

Jump to this post

I was told the same thing by two different hospice organizations, but the third took my mother with no questions - they said dementia was all they needed to qualify her. She had full care, not just palliative. Don't give up. If you want the name of the one that I used, message me privately.

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