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.

@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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This is what I am looking for. If I post this does it mean I'm part of the care for dementia people group?

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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sallysue, my mom never could come to grips with the fact that she had Alzheimer's and therefore never shared the news with family. My sister and I talked with our aunts and other family who needed to know but we didn't publicize to others. Mom knew there was something wrong and she grieved it so much but just couldn't say he words. I think we honored her in not asking her to tell others. Hope this helps you.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Thank you @nanax2! That is what I needed to hear. My sister is not grieving it so far. Our lives continue and she follows my suggestions about schedules, diet and lets me give her her meds. So with your supportive reply I think I will just let her be herself and answer the siblings questions as they arise. Thank you so much it has been nagging me and my husband for these last 4 weeks.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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@sallysue In my opinion I do not believe you should sister in talking about her Alzheimers but just let her know and give here the environment that you are there to listen without judgement or negativity. She will be going through a rollercoaster of emotions and she will need you to be her rock. I know this will be hard but she will be going through emotions while the Alzheimers takes control. Keep in touch with this conversation group for your support.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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If you want to be we are here for you and what ever your needs are

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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@sallysue, first of all, welcome! There are a few things you can do to make sure you get the messages relevant to you.

1. Because you posted a message in this discussion, you will automatically receive an email notification everytime a new message is posted here. If you no longer wish to get these email notices, simply click "unsubscribe" in the next email notice.

2. Follow the Caregiver group to get relevant messages in your Daily Digest. Here's how to follow a group http://mayocl.in/2ebIxQu

3. To get only messages relevant to the discussions and groups you follow:
a. Go to Account Settings https://connect.mayoclinic.org/account
b. Scroll to the bottom.
c. Click the box that says ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.

Learn more about setting your notification preferences here: https://connect.mayoclinic.org/get-started-on-connect/

Let me know if you have any questions. I'm sure this is helpful for everyone in the group.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Thank you! Now I'm afraid I'll lose you in cyberspace somehow but I have you bookmarked etc. I really need the support. Thank you again for taking the time to reply.

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@kmkm

Hello- I don't get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I'd love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Me too. Alzheimer's disease

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Hello & thank you . I'm JULZ.
I am the sole caregiver & POA for my 86 yr old Mom who has frontaltempral dementia , congestive heart failure , fluid in her lungs as well as inoperable breast cancer in both breasts as well as behind her bladder, & glaucoma.& arthritis
It has been quite the journey over the past two years starting with the Alzheimer's.
Some days it is very overwhelming for me.
Mom is a happy person ( which I'm very thankful for). We have always had a very good relationship. Me being the oldest of 5. Mom trusts me in everything.
Having the Alzheimer's seems to have been a bit of a blessing with all else she is going through because she doesn't experience the pain most would have Except for the arthritis in her knee.
It is extremely difficult to watch Mom going from a independent active woman to the attitudes etc of a four yr old.
Someone was asking about music. I do find that putting on soft background music helps Mom especially during early evening " sundowning" time. Being able to see outside helps as well. I have her lazy boy placed in the front window so she can watch the street activities & can comment on them.
I always tell Mom the truth about what is going on & why we are going places. But like a child. If she drops it so do I. It was difficult during the move to my home from hers but she did realize it was time. Something that helped then was her Alzheimer's Doctor told her that she was going from a family of one to a family of three & that she was very lucky to have myself & my husband to include her in our home. Mom refers to that from the dr often.
One thing I have been trying to do daily is find humour in life for her. Getting her to laugh at simple sayings , visuals etc. Even when I feel like crying I strive to bring her laughter. Laughter is good for her sense of being as well as mind.
Just typing this out has made me realized I can do this. Thanks for the airing. Lol

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