1. < Caregivers: Dementia
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New person who is caregiver for spouse and finding no one to talk to

Posted by banjo5 @banjo5, 2 days ago

1st entry. I find I have no to talk to. Very lonely. Calvery not coming is very true. I am a caregiver for spouse. Asked 2 people to call my spouse for socialization but not getting response I hoped for. Better go for now. I have learned a lot from some of mayo connect blogs.

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

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renee1941 | @renee1941 | 12 hours ago
In reply to @annie1946 "To continue. I also make time for coffee alone with friends." + (show)
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To continue. I also make time for coffee alone with friends.

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@annie1946 I have to do this more often

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renee1941 | @renee1941 | 12 hours ago
In reply to @jenniferkr "This is a very lonely road we travel. I care for my husband with dementia and..." + (show)
Profile picture for JennFH @jenniferkr

This is a very lonely road we travel. I care for my husband with dementia and we also have had the same experience from friends, children and grandchildren. Perhaps our families do not understand how lonely we are since physically we are together but we are generally with a stranger who carries on no meaningful conversation. Our community has a memory cafe that meets once per month for dementia person and their caregiver. Perhaps something similiar is available in your community? Search out any resources via Alzheimer's Association and Duet. Duet offers via zoom a caregiver support group. Also a caregiver support group via zoom through Mayo Clinic that is open to all. If your loved one is able I find it helps to just get out for a meal or coffee. Just to be around other people. Helps us both.

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@jenniferkr we do have a cafe I hope to take my husband this month

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carolreid | @carolreid | 12 hours ago
In reply to @banjo5 "Thanks to all for your hugs and input. What benefit is there from the blood test..." + (show)
Profile picture for banjo5 @banjo5

Thanks to all for your hugs and input.
What benefit is there from the blood test that tell why a persons memory is failing? This sounds bad but I have seen it elsewhere - is it a research thing for the doctors. Again I saw this elsewhere/ it has been in the back of my mind for awhile. Thanks for your input. Not sure I know how to use mayo connect

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@banjo5
My husband had the blood test (p-Tau 217) to determine if his dementia is Alzheimer's. If it was Alzheimer's there are infusions that can be given to slow the progress (Kinsula or Leqembi). There was another blood test he had that has something to do with Parkinson's. Both turned out to be negative in his case but it helps them narrow down the diagnosis.

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dederickve | @dederickve | 11 hours ago
In reply to @jenniferkr "Nice to know we are not the only ones "forgotten" by family. I thought only our..." + (show)
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Nice to know we are not the only ones "forgotten" by family. I thought only our family did that! Does not make it easier but we are not alone. I try really hard to forgive and accept their behavior.

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@jenniferkr What is hard to grasp, for me, is that they apparently favor/care more for their friends than for their own family. I know we aren’t as interesting, to them. But, my family was more important to me, than anyone else in the world ! I wanted to see them, be with them, talk with them. I understand we aren’t all alike, but my heart can’t understand leaving family out, to the biggest extent !

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dederickve | @dederickve | 11 hours ago
In reply to @trav77 "My wife is in stage five. She doesn't hold conversations well. It is mostly gibberish. Still..." + (show)
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My wife is in stage five. She doesn't hold conversations well. It is mostly gibberish. Still I wish people would call her . i understand though. It is hard for me to talk to her now also. It is a lonely road we travel for sure.

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@trav77 Keep on this site. People care.

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JennFH | @jenniferkr | 1 hour ago
In reply to @dederickve "@jenniferkr What is hard to grasp, for me, is that they apparently favor/care more for their..." + (show)
Profile picture for dederickve @dederickve

@jenniferkr What is hard to grasp, for me, is that they apparently favor/care more for their friends than for their own family. I know we aren’t as interesting, to them. But, my family was more important to me, than anyone else in the world ! I wanted to see them, be with them, talk with them. I understand we aren’t all alike, but my heart can’t understand leaving family out, to the biggest extent !

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@dederickve I agree 100%. Family should take priority and always had for us. In some ways I suspect that it is difficult to accept and they feel their loved one with dementia is alreay gone. Very tragic. I share with my husband memories of our life's experiences that he does not remember. It brings so much happiness to him. He may not remember but he lives it again. Too bad the family members are missing out on some joy that remains.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | 37 minutes ago

@banjo5 Welcome to Mayo Clinic Connect! You have joined an exceptional group of caregivers! Ask them anything and they will tell you how it really is based on their own experience. It may even be helpful to read back a few pages just to familiar yourself. And no question is ever too dumb ask!

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