Caring for someone with dementia / Alzheimer's

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

Thanks for the great idea, @colleenyoung. I think a specific group and discussion is warranted given the challenges dementia can present to caregivers.

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.

@IndianaScott

Hi @hopeful33250 and @mbabkk I am not sure if this is what was being referred to as /medicated patches', but I know in my wife's case. late in her disease journey, the doctors prescribed some of her medications both in patch form and creams, rather than pills or liquids. In one case they (the pharmacy0 also were able to compound four medications together into a suppository. As my wife's mental condition deteriorated, I was impressed with the various methods of application her doctors came up with!

Strength, courage, and peace!

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@IndianaScott
That is wonderful, Scott. I'm sure they were able to provide her more medications that way. I'm glad that you shared that.

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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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@hopeful33250

@debbraw
I have heard from many friends who say the loneliness was such a difficult part of this disease. One friend said that she and her husband (he has dementia) now eat in front of the TV since they cannot have their usual dinner conversations. I suppose it is all a matter of continued adjustment to the changes but yet you have the memories of what used-to-be.

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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

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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Hugs, I understand what you are saying, my husband seems a little better since his doctor addressed the low hemoglobin issue, but sometimes he is very forgetful.

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

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@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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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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@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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