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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.

Harriet Hodgson | @harriethodgson1 | Sep 2, 2018
In reply to @debbraw "Harriet @harriethodgson1 - I LOVED your article. I think its really going to be a big..." + (show)
@debbraw

Harriet @harriethodgson1 - I LOVED your article. I think its really going to be a big help to others in the MCI group. Thanks for that very relevant and insightful piece.

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Thanks for the boost Debbra, Volunteer Mentor!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 2, 2018
In reply to @debbraw "Thanks @hopeful33250 - Yes, you have the memories of what "used to be", but they are..." + (show)
@debbraw

Thanks @hopeful33250 - Yes, you have the memories of what "used to be", but they are memories. The cruel and unforgiving part of this disease is that you've lost what "used to be" and you've also lost "what might have been" in the future. At least for me, that can set me up for a full scale melt down if I dwell too long on it. I understand your friends adaptation to dinner in front of TV. We do that frequently, and when we go on trips, I turn on NPR or Pandora - because I miss those long car rides where it was easy to chat and plan for the trip and just connect. I think that's why it is doubly important to maintain time with friends and other family members to fill that gap and not feel so isolated. I remember not too long ago recalling what it was like many years ago for the short time I was a stay at home mom with an infant. What a joy it was when I had a chance to get out among people and talk to adults... That's kind of where I am now. And at the same time, my heart just breaks for my husband because on some level, he recognizes that he too has lost "what used to be" and what "might have been."

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@debbraw
As difficult as this is, it sounds like you have taken some positive steps to deal with this new normal. You can recognize the disappointment of what "used to be" and "what might have been" and are able to continue on. That shows an amazing adaptability. It must be very difficult. I admire the steps you have taken.

If I may ask, what made the greatest difference for you in being able to move on (i.e., past experiences, suggestions from others)?

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1 reply
Debbra Williams, Alumna Mentor | @debbraw | Sep 2, 2018
In reply to @hopeful33250 "@debbraw As difficult as this is, it sounds like you have taken some positive steps to..." + (show)
@hopeful33250

@debbraw
As difficult as this is, it sounds like you have taken some positive steps to deal with this new normal. You can recognize the disappointment of what "used to be" and "what might have been" and are able to continue on. That shows an amazing adaptability. It must be very difficult. I admire the steps you have taken.

If I may ask, what made the greatest difference for you in being able to move on (i.e., past experiences, suggestions from others)?

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Thanks, @hopeful33250. I appreciate the kind words. The biggest difference? Easy - friends and family. And that includes Connect friends! It's the difference between feeling overwhelmed and feeling supported and cared for.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 2, 2018
In reply to @debbraw "Thanks, @hopeful33250. I appreciate the kind words. The biggest difference? Easy - friends and family. And..." + (show)
@debbraw

Thanks, @hopeful33250. I appreciate the kind words. The biggest difference? Easy - friends and family. And that includes Connect friends! It's the difference between feeling overwhelmed and feeling supported and cared for.

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I understand what you mean, @debbraw. We are much alike.
I've always felt I could get through almost anything if I had the right support. That is probably why Connect has meant a lot to me.

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bflattenor | @bflattenor | Sep 2, 2018

MY Granddaughter coined this new word: FRAMILY. We cannot separate them-we need all we can get. Thank goodness for the mentrs:since no-one else answered my plea (see B-PLL). I have loads of framily,but there are times when I feel terribly alone in my search for someone else with the same kind of leukemia. Having been a caregiver for 30 years,I seem to have found my nitch in your group

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2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 2, 2018
In reply to @bflattenor "MY Granddaughter coined this new word: FRAMILY. We cannot separate them-we need all we can get...." + (show)
@bflattenor

MY Granddaughter coined this new word: FRAMILY. We cannot separate them-we need all we can get. Thank goodness for the mentrs:since no-one else answered my plea (see B-PLL). I have loads of framily,but there are times when I feel terribly alone in my search for someone else with the same kind of leukemia. Having been a caregiver for 30 years,I seem to have found my nitch in your group

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Hi @bfbflattenor Please let your granddaughter know I think her new word is wonderful! I’m also happy to hear you feel at home here! I am sorry to hear you’ve been unable to find anyone to talk to with a similar condition.

Can hou tell me what B-PLL stands for?

Strength, courage, and peace

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1 reply
bflattenor | @bflattenor | Sep 2, 2018

Go to Mayo Clinic Connect B_PLL. I seem to have my own group.

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1 reply
loisj | @loisj | Sep 3, 2018
In reply to @tavi "@kmkm Welcome! I am in the same position as you are -- except I'm caring for..." + (show)
@tavi

@kmkm Welcome! I am in the same position as you are -- except I'm caring for my spouse. Looking forward to sharing experiences and ideas with you!

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I am also caregiving for my spouse who was diagnosed with dementia. He had a fall in January, 2016 which resulted in a subdural hematoma. His short term memory was affected and he has gone down hill since. We are coping but, boy, it is hard.

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1 reply
mary2017 | @mary2017 | Sep 3, 2018

I hope you have some hobbies like reading or music which can give you some pleasure when times seem so hard. There certainly are dark times we have in this life we've been given. So may you also find good times. I have compassion.

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Debbra Williams, Alumna Mentor | @debbraw | Sep 3, 2018
In reply to @bflattenor "MY Granddaughter coined this new word: FRAMILY. We cannot separate them-we need all we can get...." + (show)
@bflattenor

MY Granddaughter coined this new word: FRAMILY. We cannot separate them-we need all we can get. Thank goodness for the mentrs:since no-one else answered my plea (see B-PLL). I have loads of framily,but there are times when I feel terribly alone in my search for someone else with the same kind of leukemia. Having been a caregiver for 30 years,I seem to have found my nitch in your group

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LOVE Framily. What a creative soul you have for a granddaughter, @bflattenor! Thanks for sharing that.

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