Meet fellow Caregivers - Introduce yourself

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?

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.

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@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.

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

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@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.

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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.

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@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.

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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?

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@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.

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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.

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

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@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.

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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!

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@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!

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@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.

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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.

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The food issues were the good! Now, the bad. A patient care employee took me aside in the first weeks of her admission and warned me that elderly patients like my mom tend to get ignored. On her good days she's as sweet and as polite as can be …. but on her 'uncertain' days she's like Granny Clampett on steroids and will (for example) exploit a nurse's physical weakness with impeccable timing, pinch, and take a swing at those attending her. She's been on her own for the latter part of her life and the fact that nurse's can be male is something she will never understand.

True to this patient care employee's word, I entered the room one day in the midst of an argument happening between my mom and a senior nurse of 35 years. I informed the nurse that she had recently been on the full spectrum of antibiotics and that she was still suffering hallucinations etc from their application and not to agitate her. She informed me that antibiotics do not cause any issues as such and that her issues were all due to education and upbringing. I reported her immediately and she was removed!

The bottom line is that 'some' health care employees should not be attending to geriatrics. There have been many other incidences, as such and in the line of 'delaying' care due to feistiness …. and I have dealt with them all to the best of my ability and for the ones I have been informed about or personally observed. I also went to management and had them assure me that a geriatric dementia patient, rock star, hockey player and infant all get the exact same attention and care!!! (nothing written on paper for that one, though)

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@straight_shooter

The food issues were the good! Now, the bad. A patient care employee took me aside in the first weeks of her admission and warned me that elderly patients like my mom tend to get ignored. On her good days she's as sweet and as polite as can be …. but on her 'uncertain' days she's like Granny Clampett on steroids and will (for example) exploit a nurse's physical weakness with impeccable timing, pinch, and take a swing at those attending her. She's been on her own for the latter part of her life and the fact that nurse's can be male is something she will never understand.

True to this patient care employee's word, I entered the room one day in the midst of an argument happening between my mom and a senior nurse of 35 years. I informed the nurse that she had recently been on the full spectrum of antibiotics and that she was still suffering hallucinations etc from their application and not to agitate her. She informed me that antibiotics do not cause any issues as such and that her issues were all due to education and upbringing. I reported her immediately and she was removed!

The bottom line is that 'some' health care employees should not be attending to geriatrics. There have been many other incidences, as such and in the line of 'delaying' care due to feistiness …. and I have dealt with them all to the best of my ability and for the ones I have been informed about or personally observed. I also went to management and had them assure me that a geriatric dementia patient, rock star, hockey player and infant all get the exact same attention and care!!! (nothing written on paper for that one, though)

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It is indeed unfortunate @straight_shooter that we tend to see such a common theme of folks providing care for patients who aren't especially a particularly good fit for the job. That said, I do know that being a care provider is a very tough job! It was tough for me and I was doing it out of love. Shortly after my wife passed away a friend suggested I become a caregiver for others and it only took me a New York minute to say "I had no problem being a caregiver out of love, but there is no way I could do it for pay — especially the low pay that is the norm for many CNAs and other attendant positions!

Hopefully this is an area, as the demand for these positions continues to increase folks will be offered a better wage and the industry will attract more good folks!

Courage, strength, and peace!

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I think my message got lost when I checked to locate the website of the University of Iowa Hospitals series of Caregivers videos that is available online. You may have to sign in, but it costs nothing and these are worth it. You might pass the word.

My husband had been admitted to the ICCD Memory Unit almost a year ago now. I was noticing some situations with my husband in the ICCD Memory Unit where he had recently become a patient. I had noticed that the younger staff was not as patient or calming with many of the patients like my husband who tended to be combative if he didn't wish to do something. They were talking with very loud voices, quick movements, etc., when dealing with the residents. It was causing a lot of noise and confusion in the Unit, and only fueled more agitative behaviors among the residents.

When I received a questionnaire from the Care Center asking input on various topics, I replied at length about the videos being developed by the University of Iowa Hospitals for Caregivers and Providers that had just recently (fall of 2017) been put online at their website. We had viewed many of them at the Caregivers Support Group I had attended and given them feedback on several items to be included. When I visited a few weeks later I noticed a TV in the conference room that was on to what looked like an educational film. When I entered the Memory Unit, I overheard the nurses saying they were a little short handed that afternoon as staff was being pulled out for some workshops. During the weeks following I noticed a change in the atmosphere of the unit, so I think they were using my suggestions.
I think we all need to speak up about the low pay these people who are caring for our loved ones receive. They are doing a difficult job even on good days, and most of them really do care.

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@straight_shooter

The food issues were the good! Now, the bad. A patient care employee took me aside in the first weeks of her admission and warned me that elderly patients like my mom tend to get ignored. On her good days she's as sweet and as polite as can be …. but on her 'uncertain' days she's like Granny Clampett on steroids and will (for example) exploit a nurse's physical weakness with impeccable timing, pinch, and take a swing at those attending her. She's been on her own for the latter part of her life and the fact that nurse's can be male is something she will never understand.

True to this patient care employee's word, I entered the room one day in the midst of an argument happening between my mom and a senior nurse of 35 years. I informed the nurse that she had recently been on the full spectrum of antibiotics and that she was still suffering hallucinations etc from their application and not to agitate her. She informed me that antibiotics do not cause any issues as such and that her issues were all due to education and upbringing. I reported her immediately and she was removed!

The bottom line is that 'some' health care employees should not be attending to geriatrics. There have been many other incidences, as such and in the line of 'delaying' care due to feistiness …. and I have dealt with them all to the best of my ability and for the ones I have been informed about or personally observed. I also went to management and had them assure me that a geriatric dementia patient, rock star, hockey player and infant all get the exact same attention and care!!! (nothing written on paper for that one, though)

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Yes, this is an area where I was totally naïve. I was under the belief the healthcare professionals entered the vocation more for an overwhelming desire to care for others …. and what a bonus to get paid for something you love to do. What I have found is that there are many who do exactly this. AND, there are many who work just for the paycheck and can't wait to punch the time clock.

To further convolute matters there are unions involved and there are restrictions to what lengths staff can do above and beyond their line of duty which often crosses moral and ethical lines when patients need immediate extracurricular care. Some of the more compassionate caregivers ignore these regulations and come running while others use it as a carte blanche to 'sit' and ignore as long as possible.

So ,,,,, it's these curious modalities and need for constant vigilance, due diligence, monitoring, policing that takes the extra time and energy. To be honest, I have no problem with 'just' the care giving itself,,,,,, if only it were that simple.

Doctors are not immune from this scene. It is unconscionable to think that they may simply forget to enter important diagnostic data into the computer database and for the more hands on caregivers to follow up on – but this has happened on several occasions already and also must be monitored regularly.

An example of this was that she was aspirating early on and could not take drink by straw …. which was her main form of intake. But then a Doctor and Speech Pathologist examined her and cleared for both straw and more solid foods. GREAT! I started immediately to up her intake based on this information and in which the Dr. informed me face to face. But wait, he did not enter in to the computer. Staff observed me feeding via straw and with solid foods. An argument ensued, security called, and I was expelled. It would be 10 days before the database would be officially corrected and (meanwhile) Mom had slipped to 82 pounds! Unconscionable, sad but a true happening.

REPLY
@rmftucker

I think my message got lost when I checked to locate the website of the University of Iowa Hospitals series of Caregivers videos that is available online. You may have to sign in, but it costs nothing and these are worth it. You might pass the word.

My husband had been admitted to the ICCD Memory Unit almost a year ago now. I was noticing some situations with my husband in the ICCD Memory Unit where he had recently become a patient. I had noticed that the younger staff was not as patient or calming with many of the patients like my husband who tended to be combative if he didn't wish to do something. They were talking with very loud voices, quick movements, etc., when dealing with the residents. It was causing a lot of noise and confusion in the Unit, and only fueled more agitative behaviors among the residents.

When I received a questionnaire from the Care Center asking input on various topics, I replied at length about the videos being developed by the University of Iowa Hospitals for Caregivers and Providers that had just recently (fall of 2017) been put online at their website. We had viewed many of them at the Caregivers Support Group I had attended and given them feedback on several items to be included. When I visited a few weeks later I noticed a TV in the conference room that was on to what looked like an educational film. When I entered the Memory Unit, I overheard the nurses saying they were a little short handed that afternoon as staff was being pulled out for some workshops. During the weeks following I noticed a change in the atmosphere of the unit, so I think they were using my suggestions.
I think we all need to speak up about the low pay these people who are caring for our loved ones receive. They are doing a difficult job even on good days, and most of them really do care.

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Thank you @rmftucker for the resource availability! I was not aware of these videos so I will enjoy taking a look at them. Thanks again for the post and the information.

I agree we all need to speak up for a better living wage for those who are in the caregiving profession — and for more free-access information, like the videos you mentioned, for caregivers to utilize to help us all out! Knowledge is power and it can also truly help breakdown the feelings of inadequacy, doubt, and isolation we often feel from time-to-time as caregivers.

I hope all is going well for you these days!

Now I am off to seek out those videos!

Courage, strength, and peace

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