1. < Caregivers

Longtime caregiver looking for support and coping tips

Posted by tim1028 @tim1028, Mar 20, 2022

I've been a member of Mayo Clinic Connect for several years, but this is my first time at this group. Here's my situation: I have been a caregiver for my parents, 4 years for both and 7 years for my mom alone ( she died in December). I also have been a caregiver for my wife for the past two years because of incapacitating Chronic Fatigue Syndrome mixed in with Long Covid symptoms. It has been helpful to see a therapist weekly, but I feel emotionally exhausted and feel like I have little in reserve to give. I work hard to take care of myself as well, but this is easier said than done. My reason for posting here is for support and encouragement from others in the same situation. And,too, perhaps to pick up some useful tools to cope with the difficulties of caregiving.

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

Merry, Alumni Mentor | @merpreb | Mar 2, 2023
In reply to @harriethodgson1 "Good Morning Merry, Thanks for your message. I don't think I'm allowed to post links on..." + (show)
@harriethodgson1

Good Morning Merry,
Thanks for your message. I don't think I'm allowed to post links on this website. However, if people go to Amazon, click on books, and enter Harriet Hodgson, author, they can find the caregiver series and other books. My 45th book is in production now.

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I just placed my order!

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1 reply
Merry, Alumni Mentor | @merpreb | Mar 2, 2023
In reply to @harriethodgson1 "Thanks a bunch!" + (show)
@harriethodgson1

Thanks a bunch!

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You are more than welcome! I'm looking forward to reading every word

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pattyinal | @pattyinal | Mar 3, 2023
In reply to @merpreb "Hi Harriet! Nice to see your post. My husband has just been diagnosed with Vascular Dementia..." + (show)
@merpreb

Hi Harriet! Nice to see your post. My husband has just been diagnosed with Vascular Dementia and it has been progressing so fast it's dizzying. Next Wed. we go to specialists for his first neuro assessment.

Would you mind posting links to your books once more? This will help so many of us starting out on this horrendous loving journey.

Thank
Merry

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Merry, I also suggest you Google Teepa Snow and her Positive Approach to Care. I have learned SO much from her. Many of her helpful videos are free on Utube, TikTok, and Facebook. She is amazing. Since we all can’t have our own Teepa, we can definitely learn a lot from her.

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athena2023 | @athena2023 | Mar 7, 2023
In reply to @naturalebyjas "Scott, I admire your strength and positive attitude. I’m caregiver to my husband, who was diagnosed..." + (show)
@naturalebyjas

Scott,

I admire your strength and positive attitude. I’m caregiver to my husband, who was diagnosed with bladder cancer in August 2021. Although it’s been only a few months since the diagnosis, I have been feeling so mentally and physically exhausted and overwhelmed. I’m hesitant to share my feelings with my close friends because I don’t believe anyone else needs this type of negativity. I pretend I’m fine if and when I have a chance to get together with them. But I’m really not okay.
My biggest issue was when he lashes out on me because of his stress and fear of cancer returning, as well as because he suffers from the side effects of treatments. I tried and tried not to take any of these personally, but it is very difficult at times simply because I did not do anything wrong and I have my own feelings too. I do put myself in his own shoes but I still find it hard to absorb at times.
How did you cope and overcome all of the above? I’m at a point where I don’t even want to socialize with my close circle of friends because I don’t want to pretend all is fine with me, yet I really don’t want to let my negative emotions out because I’m afraid my experience will not do them any good.

Thank you for listening.
JW

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Hi JW,
I hear you about the stress caused by your husband lashing out. My husband has had blood cancer, a serious lung infection and a stroke. He was in fairly good shape until the stroke and then because of the location in the brain that the stroke affected he became very morose and angry. Because I am the only person he sees it all lands on me and I think I understand exactly how you feel about telling friends what is really happening. I don't want to load them with my troubles. I tried to explain his behavior to my daughters but they don't want to or can't hear. It made me feel very alone which is one reason I decided to join this support group. I am struggling too and feeling inadequate because I can't figure it out, so what I do is just remind myself that I am okay right now! in the moment, and I'll let the next moment take care of itself. I pray--for all of us who find ourselves in frightening and exhausting situations. I remember that one foundational truth of life is that everything changes, and often for the better. I am grateful for every morning, for beauty and kindness wherever I find it. Hang in there and I will be hanging there with you 🙂

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1 reply
naturalebyjas | @naturalebyjas | Mar 7, 2023
In reply to @athena2023 "Hi JW, I hear you about the stress caused by your husband lashing out. My husband..." + (show)
@athena2023

Hi JW,
I hear you about the stress caused by your husband lashing out. My husband has had blood cancer, a serious lung infection and a stroke. He was in fairly good shape until the stroke and then because of the location in the brain that the stroke affected he became very morose and angry. Because I am the only person he sees it all lands on me and I think I understand exactly how you feel about telling friends what is really happening. I don't want to load them with my troubles. I tried to explain his behavior to my daughters but they don't want to or can't hear. It made me feel very alone which is one reason I decided to join this support group. I am struggling too and feeling inadequate because I can't figure it out, so what I do is just remind myself that I am okay right now! in the moment, and I'll let the next moment take care of itself. I pray--for all of us who find ourselves in frightening and exhausting situations. I remember that one foundational truth of life is that everything changes, and often for the better. I am grateful for every morning, for beauty and kindness wherever I find it. Hang in there and I will be hanging there with you 🙂

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@athena2023 : Thank you so much for your encouraging words and sharing your very same feelings. It means a lot. We have had more good days than bad, and when the bad day comes and he is angry, I've learned to walk away for a few hours, although feeling sad and alone, it's part of life that we signed up for. I read some self help books, Wayne Dyer's books helped me a lot. I'm here for you always if you need a shoulder to lean on. Try to set aside some time for self-care, even half an hour walks, getting nails done, treat yourself a cup of good coffee or a glass of wine.

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jprust | @jprust | Mar 7, 2023
In reply to @asterken "I am managing pretty well. I am a social worker and a psychologist so I am..." + (show)
@asterken

I am managing pretty well. I am a social worker and a psychologist so I am well acquainted with what services exist in my community, and how to access. When my father was not responding well to treatment the oncologist had their social worker call me and I was astounded at how little she knew. I am better equipped to manage this stress than most lay people.

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I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries. I taught staff and family how to best communicate with the patients, how to set up the environment for successful interactions, strategies for interaction.
But my father had several small strokes, and then some form of dementia or mental problems that I had never encountered. Hoarding, delusions, strange behaviors, striking out at others started. It is so different when it is your own parent than when you are in a professional role. Just being able to vent and cry and talk about the craziness to a good listener is good for the soul. We also had to get guardianship and put him in a locked ward of a nursing home which was the most horrible thing to have to do. Dad was oriented, could answer all the questions on their nursing form. But he would show up at a family Christmas Eve party with a machete tucked in his belt. He was reusing adult disposable diapers, eating rotten food, showing up at the hospital for a heart transplant (at 90 years old).
I guess I am trying to say we can have the knowledge, the skills, the empathy, but when it is a parent all bets are off.
And also, we think we can handle more than others and set ourselves up to accomplish impossible tasks. There is a lot of guilt about saying “I can’t do this and I have to place this person in another setting.”

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 7, 2023
In reply to @harriethodgson1 "Good Morning Merry, Thanks for your message. I don't think I'm allowed to post links on..." + (show)
@harriethodgson1

Good Morning Merry,
Thanks for your message. I don't think I'm allowed to post links on this website. However, if people go to Amazon, click on books, and enter Harriet Hodgson, author, they can find the caregiver series and other books. My 45th book is in production now.

Jump to this post

@harriethodgson1, you can most certainly post a link to your library of books. They are so helpful and you are here in the support groups to provide your support and experience. It's obvious that you're not here to sell your books.

Let me post your "inventory" here:
Books by Harriet Hodgson http://harriethodgson.net/books21

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athena2023 | @athena2023 | Mar 7, 2023
In reply to @jprust "I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries...." + (show)
@jprust

I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries. I taught staff and family how to best communicate with the patients, how to set up the environment for successful interactions, strategies for interaction.
But my father had several small strokes, and then some form of dementia or mental problems that I had never encountered. Hoarding, delusions, strange behaviors, striking out at others started. It is so different when it is your own parent than when you are in a professional role. Just being able to vent and cry and talk about the craziness to a good listener is good for the soul. We also had to get guardianship and put him in a locked ward of a nursing home which was the most horrible thing to have to do. Dad was oriented, could answer all the questions on their nursing form. But he would show up at a family Christmas Eve party with a machete tucked in his belt. He was reusing adult disposable diapers, eating rotten food, showing up at the hospital for a heart transplant (at 90 years old).
I guess I am trying to say we can have the knowledge, the skills, the empathy, but when it is a parent all bets are off.
And also, we think we can handle more than others and set ourselves up to accomplish impossible tasks. There is a lot of guilt about saying “I can’t do this and I have to place this person in another setting.”

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I am so worried that it will come to placing my husband in another environment--not now, but I am wondering how I will know when, as I seem to be getting somewhat used to his behavior. That's scary! I suppose a decision would be made when/if he became dangerous, violent or tried to harm himself? He has just turned 71 and has had chronic blood cancer for five years and chemo once during that time. He is now MRD (which is minimal residual disease) and translates to, remission but testing every three months.
I have encouraged him to seek counseling to help with the stroke effects but he sneers that there is nothing anyone could do to help him! He is very, very negative most days with occasional good days, days during which one would not notice that there was anything off about his behavior. It is very confusing because it seems up and down, like a roller coaster (roller coasters cause me to vomit = : O
Thanks for your kindness,
Athena

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1 reply
athena2023 | @athena2023 | Mar 7, 2023
In reply to @jprust "I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries...." + (show)
@jprust

I am a speech/language pathologist that spent years working with patients with dementia, strokes, brain injuries. I taught staff and family how to best communicate with the patients, how to set up the environment for successful interactions, strategies for interaction.
But my father had several small strokes, and then some form of dementia or mental problems that I had never encountered. Hoarding, delusions, strange behaviors, striking out at others started. It is so different when it is your own parent than when you are in a professional role. Just being able to vent and cry and talk about the craziness to a good listener is good for the soul. We also had to get guardianship and put him in a locked ward of a nursing home which was the most horrible thing to have to do. Dad was oriented, could answer all the questions on their nursing form. But he would show up at a family Christmas Eve party with a machete tucked in his belt. He was reusing adult disposable diapers, eating rotten food, showing up at the hospital for a heart transplant (at 90 years old).
I guess I am trying to say we can have the knowledge, the skills, the empathy, but when it is a parent all bets are off.
And also, we think we can handle more than others and set ourselves up to accomplish impossible tasks. There is a lot of guilt about saying “I can’t do this and I have to place this person in another setting.”

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Your Father's behaviors sound quite like my husbands (not the machete!) Could you recommend any books or websites that discuss how to best communicate with brain disordered people? ( I don't think he has "dementia" but he does exhibit some of the described behaviors).
Thanks for any help,
Athena

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