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Caregiver Heroism and Unanswered Questions

Caregivers: Dementia | Last Active: May 26 2:32pm | Replies (29)

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Profile picture for memoriestomoments @memoriestomoments

Dear @pcetng0202
I can imagine your understandable fear. All the advice and good wishes do not diminish our rational awareness of the care load and the fear of its likely surge upward over time. One can feel very very alone at night when the work may be done for the day but there are administrative matters to deal with and the sense that getting enough sleep is unlikely before it all starts again.

My thoughts
I have never seen benefits from drawing a person's attention to their dementia. There are bountiful benefits from keeping out dear ones feeling as whole as possible. The benefits for the person are clear, they can avoid fear and depression that so often visits those with not just dementia but a named "sentence" of dementia. The family avoids the secondary effects of that person's fear and depression, behavioral issues, sleep issues, etc. The family also benefits because it is a joyful act to keep someone who is fading feeling connection, joy, worth, love, calm, etc. It is also a " culture" that is more comfortable for others to enter and participate in: You don't want to lose friends and helpers who are made uneasy by a grim, deficit- focused aura.

I hope that your wife can be appropriately compliant while remaining innocent of her true condition. But telling someone that they have dementia to convince them to do something is kind of like telling a child "because I said so", it points out their position but may not lead to compliance. My approach was to make the needed changes in our lives so enjoyable to my husband that he did not mind being carried along on a string of curated "moments" as his "memory"-driven life no longer was possible.

You do not mention if there are family members or other sources of informal care assistance available or if you are in a position financially to be able to afford outside help. My local support group had a mantra for which I will be eternally grateful . Rarely did a meeting happen in which someone wasn't told "Get help before you need it." I think you need it. I was hesitant:
-- What would they do?
-- How can I get him to accept it?
Get someone recommended by an acquaintance who has dementia experience. Or start by finding a day care facility. I started with a home caregiver who was terrific and won my husband over with his personality, dedication to my husband's welfare, and relentlessly jovial attitude. Who among us woudl not like to have someone whose job it is to make us happy and healthy! The day care program was terrific too. 10-2 each day,

The threat to your health of trying to do it all is high and large. I almost died last year of a hemorrhage in my skull. That focused the mind. I realized that I had been piecing together help and it was not a sustainable plan. I hired two young women who split the week, 24x7.

I don't know if your wife is cognitively challenged, but otherwise pretty healthy. I found that the 15+ years of working to enable him, and us, to live fully while his cognitive capabilities changed, was not anywhere near as hard as the time managing cognitive and physical declines associated with the Alzheimer's. We have just started hospice care at home. It is hard to face that our time may be nearing an end but I am so glad that I sought out the gerontologist assessment of that . I had been trying to keep all our options open. Now I can optimize things within the right scenario. And I am being able to do that because I have this fabulous access to deeply knowledgeable and caring people at the hospice service provider.

All the best to you!

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Replies to "Dear @pcetng0202 I can imagine your understandable fear. All the advice and good wishes do not..."

@memoriestomoments -as before, your words bring much wisdom and caring! I learn so much from you and others who share their thoughts and experiences on this wonderful site…we are almost there - to needing help, but hard to know. Right now, my husband would not accept, nor probably need assistance in the home, and not ready for day facilities either…but changes are seeming to happen more quickly of late. We did visit and tour a wonderful day care place near us. I hope we can get in when ready. I am sorry to read your time may be nearing an end, and glad you were able to take advantage of wonderful people to help you and your loved one. “Get help before you need it” is something my psychiatrist says also, but currently, my husband is not there yet. Best wishes to you and thank you for contributing while you have so much going on in your own life!