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What would you tell your future care partner?
Posted: Tuesday, March 12, 2019 6:25 PM
Joined: 2/3/2018
Posts: 814

I am the primary care partner for my mom with vascular dementia. I share this partnership with my sister, and a p/t live-in caregiver. It's a set-up that benefits Mom and us, she loves each of us in her own way, seems to benefit from the variety of our three faces throughout her week, and our three different styles of care.

I also blog about our dementia journey to keep faraway family and friends up-to-date, and to have a creative outlet for myself.

Lately I’ve been fantasizing about having just 5-minutes of Decade-Ago-Mom. I have so many questions I want to ask her, such a desire for affirmation that we’re doing right by her on this journey. I daydream that she’d say things, like…

“Long drives, more often!”

“You are all doing great, but… more music. Less news.”

“Don’t be hard on your cousin. Her courage lies in other directions.”

“I don’t like bananas that much. Mix it up a bit, wouldja?”

“Thank you for keeping me active, but sometimes I really do prefer sleeping in.”

“Stop stressing about so-and-so disappearing on me. I never liked them anyway.”

I was thinking about this last night, which lead me to wonder what other dementia people, who are earlier in their journeys then Mom, would want to say to their future care partners. So, I thought I’d ask you all: what would you tell your future caregiver(s)? What information about your preferences in attitudes, lifestyle, food, music, clothes, activities, people do you want them to know 5 years from now? What insight to yourself do you want them to have? Do you know who your future care partner(s) will be?

Maybe hearing your responses might help me let this fixation go!

Posted: Tuesday, March 12, 2019 10:05 PM
Joined: 7/26/2014
Posts: 2

I would say....

Thank you from the bottom of my heart.


Posted: Tuesday, March 12, 2019 10:24 PM
Joined: 2/26/2019
Posts: 172

Ive been working on a list of things for my future when i wont b able to express myself.  Ive read alot that music is good therapy for people with dememtias. Since i hav luvved music ALL MY LIFE, Ive been making a list of songs that i particularly like.  I found a SIMPLE player at the ALZ Store that only has 2 or three buttons so we can easily operate it as long as possible.  It holds 1,000 downloaded songs that i am pickimg out of each decade of my life. 

Im also making a list of my favorite foods as i want to hav things that i REALLY like.  I figure if i hav things listed, i mite hav a 50% chance of gettimg what i want.

Im also listimg things that make me happy and comfort me, like just having my hand held, or someone singing Twinkle, twinkle little star or just humming.  I also believe in the power of love and caring, and PRAYER.  If i list all the things that i enjoy, and hav that list in my room, anyone can look at that list and understand me just a little more.

I also read that the sense of smell is important to people who are in a comatose state.  Since i absolutely loved flowers all of my life, i want to smell the scent of flowers in my room. I also luvved nature-- animals, trees, prairies, mountains, etc. so i will hav some songs with nature sounds in the background as part of my favorite songs. 

I also love sunshine and want to hav the curtains open in my room open wide!  If possible, i would luv to hav a bird feeder on the other side of that window. If i cant see the birds, at least i can hear them singing!  I would also like the sound of a small fountain going in my room.  A small aquarium would also b peaceful and calmimg too!  

So, basically i want things that i luvved pre-dementia! Thin gs that are calming and that will b meangful to me, and hopefully touch the last inner piece of my soul....

Posted: Wednesday, March 13, 2019 12:21 AM
Joined: 1/11/2019
Posts: 70

I fight for Death for Dignity.  If there were only a law that would allow those of us early diagnosed to be able to use the same laws that terminally ill others can in some states, legislation is changing in states every year for the terminally ill, it just does not include my disease.  I am talking about when we are in the final stage, unable to speak, unable to do any daily ADLs or have any quality of life.  This would give the dementia patients an alternative.  I normally do not post my opinions that are this personal, but for some reason your post sparked this in my brain.  

I do realize this would not be an option for all, but it would allow the terminally ill to be able to make life end decisions.  I mean, I've already registered with my state, a living will, why can I not partake in the death with dignity law.  Because.... you have to be of sound mind at the time of death.  Well that window will eventually close in and that takes that humane option off the table.  I get so over other humans deciding what I can and cannot do with my life.  I also realize it's much more complicated than I've described here.  Its just an option I would like for myself and a gift to my family once I no longer know who they even are.  By that time, my life savings will be depleted, 1/2 of our assets in my marriage could easily be gone.  Why?  So the $$$ can go to the health industry and the care facilities.  Sad. 

Posted: Wednesday, March 13, 2019 9:31 AM
Joined: 2/26/2019
Posts: 172

Smiles, i totally agree!  I wonder if we can state in our living will that when choking part of dementia starts, we can request that food and liquids b withheld from us?  I think that would b a legitinate reason to hav food and water withheld at this point sinc the choking almost always leads to pneumonia, and then usually death. I read (can't remember where--LoL) that most dementia deaths are from pneumonia. 

A friend of mines mom couldmt eat or drink without choking, so she chose to withhold liquids and food. She died peacefully within the week as Hospice care kept her sedated.  I kmow that Colorado allows for "assisted suicide,"and i think there are others.

I would start by asking ur neurologist (&/or) your primary care doc about end stage dementia and let them know ur strong feelimgs. Perhaps they will hav some suggestions...

THANKS for posting ur feelings as it REMINDED me that i had wanted to talk to my docs about my choice to withhold food and water when i get to choking stage. Actually i already choke alot from my Shrogrens disease which causes me extremely dry mouth. I havnt eaten bread for several years and hav to b VERY CAREFUL when eatimg meats. I can only imagine what it will b like when my dementia has progressed.....

Posted: Wednesday, March 13, 2019 11:28 PM
Joined: 1/11/2019
Posts: 70

Exactly on all you wrote.  Some things to start trying to figure out so we can share with our loved ones our end of life wants.
Posted: Wednesday, March 20, 2019 9:00 PM
Joined: 2/3/2018
Posts: 814

Thank you all for chiming in. Vik, with what I know now I wished I'd have had conversations with Mom along the lines of your prep. Whoknows, your response brought a joy to my heart. I hope I've earned that sentiment from Mom. Most of the time I think so... although today I took her to a doctor appointment and afterwards she told me she was going to kill me, so I know I ain't always getting a gold star!

Smiles, I wish you courage in your fight! I have mixed feelings about assisted suicide once cognition is in question, just because as of yet, I haven't seen any legislation that protects vulnerable people from outside abuse of the option, but it sounds like you are pressing for language that would cover all bases.

Thanks again, you guys.

Michael Ellenbogen
Posted: Monday, November 4, 2019 12:42 PM
Joined: 11/30/2011
Posts: 3363

 Do not fall for this scammer 

ALZConnected Moderator
Posted: Wednesday, November 6, 2019 8:26 AM
Joined: 8/17/2011
Posts: 324

ALZConnected members, 

A post has been removed from this thread coming from a spam account, which was in violation of our Community Guidelines. As a result, conversations within this thread may appear altered. 

Thank you. 

Posted: Sunday, November 17, 2019 6:11 PM
Joined: 8/13/2019
Posts: 12

Smiles and others, I so TOTALLY agree.  Recently diagnosed and have already written out my living will and final requests to include stopping all blood pressure medications etc. when I no longer can perform activities of daily life and/or know who I or my husband is.  I also wish Florida (where I live) had voluntary euthanasia when the time comes.  I do not want to be a burden on my husband and deplete our life savings/retirement just to keep my heart beating. When my mind goes, so do I.  I will no longer be me but an empty shell suffering as well as causing suffering to those who love me. I will have been gone (mentally and emotionally) a long time before that happens.  IMO we treat dogs and cats better than we treat humans with this sidious disease.