1. < Caregivers
Moderator

Meet fellow Caregivers - Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Aug 27, 2016

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let's use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

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

straight_shooter | @straight_shooter | Apr 29, 2018

My 96 year old Mother has been in transitional care for the past year. She had been not eating, fading memory, down to 85lbs,..... and the Doctors said that there was not much they could do for her and that she was in the final stages of her dementia(?). They said the best thing I could do was to go away for a few weeks and let them see what they 'could' do for her. I didn't do that but decided to spend as much time as I could with her offering food in various 'memory/sensory' care techniques (as I could think of) and see what happened.

Fast forward to today, and although still extremely picky about food(she always was),has gained 20 pounds, and although labeled a 'feed', still needs my daily 'memory care' techniques over and beyond to what the health care professionals are willing to go - especially to get 'nutritionally' through her more resistant days. Although time consuming, it's been a win/win and there have been many favorable health care professional experiences and many unconscionable, negligent, unethical ones. Could easily write a book on this all.

Edit: Her short-memory in this time period has not decreased any but maintained or increased(+1-2%) incrementally. She has recommenced playing her computer games of yore - Solitaire and MahJong, and some newspaper crosswords as well.

REPLY
7 replies
All_in_1963 | @burrkay | Apr 29, 2018
In reply to @straight_shooter "My 96 year old Mother has been in transitional care for the past year. She had..." + (show)
@straight_shooter

My 96 year old Mother has been in transitional care for the past year. She had been not eating, fading memory, down to 85lbs,..... and the Doctors said that there was not much they could do for her and that she was in the final stages of her dementia(?). They said the best thing I could do was to go away for a few weeks and let them see what they 'could' do for her. I didn't do that but decided to spend as much time as I could with her offering food in various 'memory/sensory' care techniques (as I could think of) and see what happened.

Fast forward to today, and although still extremely picky about food(she always was),has gained 20 pounds, and although labeled a 'feed', still needs my daily 'memory care' techniques over and beyond to what the health care professionals are willing to go - especially to get 'nutritionally' through her more resistant days. Although time consuming, it's been a win/win and there have been many favorable health care professional experiences and many unconscionable, negligent, unethical ones. Could easily write a book on this all.

Edit: Her short-memory in this time period has not decreased any but maintained or increased(+1-2%) incrementally. She has recommenced playing her computer games of yore - Solitaire and MahJong, and some newspaper crosswords as well.

Jump to this post

That is simply an amazing story! You are to be commended for your very special efforts! GREAT JOB!

REPLY
straight_shooter | @straight_shooter | Apr 29, 2018
In reply to @straight_shooter "My 96 year old Mother has been in transitional care for the past year. She had..." + (show)
@straight_shooter

My 96 year old Mother has been in transitional care for the past year. She had been not eating, fading memory, down to 85lbs,..... and the Doctors said that there was not much they could do for her and that she was in the final stages of her dementia(?). They said the best thing I could do was to go away for a few weeks and let them see what they 'could' do for her. I didn't do that but decided to spend as much time as I could with her offering food in various 'memory/sensory' care techniques (as I could think of) and see what happened.

Fast forward to today, and although still extremely picky about food(she always was),has gained 20 pounds, and although labeled a 'feed', still needs my daily 'memory care' techniques over and beyond to what the health care professionals are willing to go - especially to get 'nutritionally' through her more resistant days. Although time consuming, it's been a win/win and there have been many favorable health care professional experiences and many unconscionable, negligent, unethical ones. Could easily write a book on this all.

Edit: Her short-memory in this time period has not decreased any but maintained or increased(+1-2%) incrementally. She has recommenced playing her computer games of yore - Solitaire and MahJong, and some newspaper crosswords as well.

Jump to this post

One of the many storylines in this year long adventure is in the ethics of feeding itself. I was met with much resistance, initially, with my methods of offering food which were deemed by some healthcare professionals to be 'forcing'.

True, they may have been above and beyond normal healthcare feeding techniques, but certainly in no way forcing. More than one Doctor even suggested that if it's her will 'not' to eat, then we really should honor that notion.

My position was/has been that she wants to eat but her non-calm mind often spoils her appetite and thus the 'theatre of the mind' ambience has to be such that she's calm and relaxed enough and with sufficient peace of mind to physically open, chew, and swallow.

In other words, I needed to bridge around or override the painfully worrysome thoughts for get sustenance. That was the challenge! That was the task. That is what I did.

REPLY
Jamie Olson | @jamienolson | Apr 29, 2018
In reply to @straight_shooter "My 96 year old Mother has been in transitional care for the past year. She had..." + (show)
@straight_shooter

My 96 year old Mother has been in transitional care for the past year. She had been not eating, fading memory, down to 85lbs,..... and the Doctors said that there was not much they could do for her and that she was in the final stages of her dementia(?). They said the best thing I could do was to go away for a few weeks and let them see what they 'could' do for her. I didn't do that but decided to spend as much time as I could with her offering food in various 'memory/sensory' care techniques (as I could think of) and see what happened.

Fast forward to today, and although still extremely picky about food(she always was),has gained 20 pounds, and although labeled a 'feed', still needs my daily 'memory care' techniques over and beyond to what the health care professionals are willing to go - especially to get 'nutritionally' through her more resistant days. Although time consuming, it's been a win/win and there have been many favorable health care professional experiences and many unconscionable, negligent, unethical ones. Could easily write a book on this all.

Edit: Her short-memory in this time period has not decreased any but maintained or increased(+1-2%) incrementally. She has recommenced playing her computer games of yore - Solitaire and MahJong, and some newspaper crosswords as well.

Jump to this post

Welcome @straight_shooter. Determination and love on your end and how lucky for your Mother to have you. I loved reading this post. Thank you for sharing! So how did you calm her mind enough to eat? what methods of offering food worked?

REPLY
straight_shooter | @straight_shooter | Apr 29, 2018
In reply to @straight_shooter "My 96 year old Mother has been in transitional care for the past year. She had..." + (show)
@straight_shooter

My 96 year old Mother has been in transitional care for the past year. She had been not eating, fading memory, down to 85lbs,..... and the Doctors said that there was not much they could do for her and that she was in the final stages of her dementia(?). They said the best thing I could do was to go away for a few weeks and let them see what they 'could' do for her. I didn't do that but decided to spend as much time as I could with her offering food in various 'memory/sensory' care techniques (as I could think of) and see what happened.

Fast forward to today, and although still extremely picky about food(she always was),has gained 20 pounds, and although labeled a 'feed', still needs my daily 'memory care' techniques over and beyond to what the health care professionals are willing to go - especially to get 'nutritionally' through her more resistant days. Although time consuming, it's been a win/win and there have been many favorable health care professional experiences and many unconscionable, negligent, unethical ones. Could easily write a book on this all.

Edit: Her short-memory in this time period has not decreased any but maintained or increased(+1-2%) incrementally. She has recommenced playing her computer games of yore - Solitaire and MahJong, and some newspaper crosswords as well.

Jump to this post

Thanks for the welcome, Jaime! So, I knew very little about this all, with the exception that I needed to calm her mind. We are all capable of being good eaters, good sleepers, good relaxers ... when our mind is more peaceful and calm. I think we can all agree on that. But how to calm the mind when the short-term memory is being challenged? Bombard the long-term memory portion of the brain with audio-visuals of all her 'pleasures of the past' moments and that what she can remember. Then when you see her visibly relax - offer food! Easier said than done, at times, but the good news is that the more food she gets, the more she relaxes and 'sees the wisdom' to take even more food.

REPLY
juani | @juani | Apr 29, 2018

Fascinating....thank you so much for sharing. Love and peace.

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 29, 2018
In reply to @straight_shooter "My 96 year old Mother has been in transitional care for the past year. She had..." + (show)
@straight_shooter

My 96 year old Mother has been in transitional care for the past year. She had been not eating, fading memory, down to 85lbs,..... and the Doctors said that there was not much they could do for her and that she was in the final stages of her dementia(?). They said the best thing I could do was to go away for a few weeks and let them see what they 'could' do for her. I didn't do that but decided to spend as much time as I could with her offering food in various 'memory/sensory' care techniques (as I could think of) and see what happened.

Fast forward to today, and although still extremely picky about food(she always was),has gained 20 pounds, and although labeled a 'feed', still needs my daily 'memory care' techniques over and beyond to what the health care professionals are willing to go - especially to get 'nutritionally' through her more resistant days. Although time consuming, it's been a win/win and there have been many favorable health care professional experiences and many unconscionable, negligent, unethical ones. Could easily write a book on this all.

Edit: Her short-memory in this time period has not decreased any but maintained or increased(+1-2%) incrementally. She has recommenced playing her computer games of yore - Solitaire and MahJong, and some newspaper crosswords as well.

Jump to this post

Hello @straight_shooter and nice to e-meet you here on Mayo Connect! It is great to have you here and thank you for sharing your important story! I am Scott and I while I am sorry to read of your mother's healthcare challenges, I commend you for the wonderful job you are doing with as your mom's caregiver. The combination of having a patient with mental challenges as well as eating challenges is a tough combination for sure. It is also wonderful to read of how you achieved success with getting your mom to eat again! That can be a tough issue to overcome!

In my wife's situation, late in her disease, she refused to eat for the final 62 days of her life. We tried many things, but the cancer was too advanced and her brain and body would only focus on survival. It is amazing how different each patient's journey is in chronic disease and caregiving. We all certainly learn new tactics and ideas from every person here!

Strength, courage, and peace!

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 29, 2018
In reply to @straight_shooter "My 96 year old Mother has been in transitional care for the past year. She had..." + (show)
@straight_shooter

My 96 year old Mother has been in transitional care for the past year. She had been not eating, fading memory, down to 85lbs,..... and the Doctors said that there was not much they could do for her and that she was in the final stages of her dementia(?). They said the best thing I could do was to go away for a few weeks and let them see what they 'could' do for her. I didn't do that but decided to spend as much time as I could with her offering food in various 'memory/sensory' care techniques (as I could think of) and see what happened.

Fast forward to today, and although still extremely picky about food(she always was),has gained 20 pounds, and although labeled a 'feed', still needs my daily 'memory care' techniques over and beyond to what the health care professionals are willing to go - especially to get 'nutritionally' through her more resistant days. Although time consuming, it's been a win/win and there have been many favorable health care professional experiences and many unconscionable, negligent, unethical ones. Could easily write a book on this all.

Edit: Her short-memory in this time period has not decreased any but maintained or increased(+1-2%) incrementally. She has recommenced playing her computer games of yore - Solitaire and MahJong, and some newspaper crosswords as well.

Jump to this post

Hello @burrkay Great to have you sharing here on Mayo Connect! It is great to have you here with the Caregivers group! I look forward to continuing to interact here!

Wishing you continued strength, courage, and peace!

REPLY
rmftucker | @rmftucker | Apr 29, 2018
In reply to @straight_shooter "My 96 year old Mother has been in transitional care for the past year. She had..." + (show)
@straight_shooter

My 96 year old Mother has been in transitional care for the past year. She had been not eating, fading memory, down to 85lbs,..... and the Doctors said that there was not much they could do for her and that she was in the final stages of her dementia(?). They said the best thing I could do was to go away for a few weeks and let them see what they 'could' do for her. I didn't do that but decided to spend as much time as I could with her offering food in various 'memory/sensory' care techniques (as I could think of) and see what happened.

Fast forward to today, and although still extremely picky about food(she always was),has gained 20 pounds, and although labeled a 'feed', still needs my daily 'memory care' techniques over and beyond to what the health care professionals are willing to go - especially to get 'nutritionally' through her more resistant days. Although time consuming, it's been a win/win and there have been many favorable health care professional experiences and many unconscionable, negligent, unethical ones. Could easily write a book on this all.

Edit: Her short-memory in this time period has not decreased any but maintained or increased(+1-2%) incrementally. She has recommenced playing her computer games of yore - Solitaire and MahJong, and some newspaper crosswords as well.

Jump to this post

I think you were very wise to look for ways that would help her eat. It is not much different than trying to get a toddler to eat nutritious food that they may not be familiar with. We just have to adapt it in ways that make it easy to eat. The same thing that I encountered a few days ago when my husband had a stomach "bug" and they had brought him jello to eat. He doesn't like jello and never has so I suggested warming it to a liquid form and adding a little water so he could drink it. I used to do that with my babies when they had an upset stomach. He like the "juice." Was that wrong?? I don't think so.

REPLY
straight_shooter | @straight_shooter | Apr 29, 2018

Thanks for all the welcomes, folks! Yes, simplifying the feeding issue, a bit - I would say that in our prime there may be a thousand unique mental paths/thoughts/wires/links between our hands, mouth, stomach, and brain that make us want to take and consume food. But ..... and in this case, the majority of these become severed, road-blocked, and thus there may only be a dozen (obscure) routes remaining and it's up to those that know the patient best ... to program and push the right combination of 'buttons'. Of course, and again in this case, it should be stated that this is assuming that the person is otherwise physically pain free and well able to consume the foods (in their advised forms/consistency) offered.

REPLY
View MoreView Less
Please sign in or register to post a reply.