1. < Caregivers

Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Jun 18, 2019

My post tonight is nothing but venting and a bit of poor me. I'm caring for my husband with Parkinson's and Lewy body dementia. His daily care demands are exhausting some days besides taking care of our home, bills etc. and attempting to take care of myself which I'm not really doing very well. If I would have the listened to the nurse of 37 years(meaning me) I would have advised myself to go to the emergency room after being sob of breath and having chest pressure but no I needed to make supper, do meds, blood sugars, help him to the bathroom and be at his beck and call. I do feel better now but am so tired and I know he will call me at least twice tonight to help him. I know this sounds pretty mixed up but I just need to vent. Unless your living this no one really wants to listen. Including my own kids. It's impossible to even carry on friendships anymore, I'm unavailable when I'm invited which is becoming less frequent all the time
I don't leave him anymore unless it's to run a short errand. I had breast cancer and treatment last summer, I never skipped a beat. The day after surgery I resumed my daily care routine, drove 40 miles one way for radiation and still cared for him. I had carpal tunnel surgery in may, came home and took care of him. Like I said there is a bit of poor me involved tonight..i better quit for now. Thanks for letting me vent.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 30, 2019
In reply to @kimspr3 "I show my husband a lot of love. Lots of thank you's. It's hard to stand..." + (show)
@kimspr3

I show my husband a lot of love. Lots of thank you's. It's hard to stand but I always try to make good meals to come home to. I try to do what I can, he's very tired. He was always loving until I got this disease and he gradually changed. After reading the posts, no more saying I'm sorry. I still have my sense of humor. I text him loving things during the day. He does say thank you.

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@kimspr3 I am out of town, and on the road. I have been deleting posts the last two days and not responding/liking anything. But this thread really speaks to me, so please allow me to ramble. Years ago I was involved with someone, whose brother had rapidly progressing prostrate cancer. His wife wanted nothing to do with him, from daily caretaking to doctors appointments to future concerns. It was a terrible thing to demonstrate to their young daughter. I did his caretaking, in addition to a regular full-time job. I was very grateful that he allowed me to, as he was such a gentle soul and such a wealth of Life wisdom. Everyday I was grateful and thanked him for allowing me the privilege of caretaking. Because it was a privilege. He never failed to say thank you. That meant more to me than any thing else. So, to @debiobrien and @vickys know that those we care for may not always say it right out loud, a look, or smile of gratitude, goes a long way.
Ginger

REPLY
2 replies
debiobrien | @debiobrien | Jun 30, 2019
In reply to @gingerw "@kimspr3 I am out of town, and on the road. I have been deleting posts the..." + (show)
@gingerw

@kimspr3 I am out of town, and on the road. I have been deleting posts the last two days and not responding/liking anything. But this thread really speaks to me, so please allow me to ramble. Years ago I was involved with someone, whose brother had rapidly progressing prostrate cancer. His wife wanted nothing to do with him, from daily caretaking to doctors appointments to future concerns. It was a terrible thing to demonstrate to their young daughter. I did his caretaking, in addition to a regular full-time job. I was very grateful that he allowed me to, as he was such a gentle soul and such a wealth of Life wisdom. Everyday I was grateful and thanked him for allowing me the privilege of caretaking. Because it was a privilege. He never failed to say thank you. That meant more to me than any thing else. So, to @debiobrien and @vickys know that those we care for may not always say it right out loud, a look, or smile of gratitude, goes a long way.
Ginger

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Yes ginger you are so right. My mom and aunt are very grateful for everything i do for them they never stop thanking me and sending me beautiful cards in the mail. I have taken care of other family members that never said thank you in fact they were abusive towards me but i still did the best i could to care for them until their passing. but you are correct just a simple thank you, i love you is all i ever wanted... just to know they appreciate me and care that i am there taking care of them as they did when raising me as a child. its my turn now. unfortunately my brother or sister or cousins do not feel the same a si do but its ok i am all my mom and aunt need we are good. some people care caretakers and some are not.

REPLY
vickys | @vickys | Jun 30, 2019
In reply to @gingerw "@kimspr3 I am out of town, and on the road. I have been deleting posts the..." + (show)
@gingerw

@kimspr3 I am out of town, and on the road. I have been deleting posts the last two days and not responding/liking anything. But this thread really speaks to me, so please allow me to ramble. Years ago I was involved with someone, whose brother had rapidly progressing prostrate cancer. His wife wanted nothing to do with him, from daily caretaking to doctors appointments to future concerns. It was a terrible thing to demonstrate to their young daughter. I did his caretaking, in addition to a regular full-time job. I was very grateful that he allowed me to, as he was such a gentle soul and such a wealth of Life wisdom. Everyday I was grateful and thanked him for allowing me the privilege of caretaking. Because it was a privilege. He never failed to say thank you. That meant more to me than any thing else. So, to @debiobrien and @vickys know that those we care for may not always say it right out loud, a look, or smile of gratitude, goes a long way.
Ginger

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These messages have made me think, too.
We have both been saying thank you, and you’re welcome, more in the past week, and we have both been different. Cause and effect? Chicken and egg? I don’t know...
I’m in the 4th year of caregiving, for MSA-c and advanced prostate cancer. I learn something new about myself and my circumstances almost every day I think.

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 30, 2019
In reply to @kimspr3 "Hi Scott, my situation is the reverse. My husband is the caregiver. My condition is getting..." + (show)
@kimspr3

Hi Scott, my situation is the reverse. My husband is the caregiver. My condition is getting worse, I feel so bad for him. I don't like to ask for much help because he cares for the home, grounds. I need help bending, dressing, standing. Pain. I try not to look at his face to see if he is annoyed. Our families live out-of-state and friends don't call. I don't know how to make his life better? I keep telling him, I'm sorry. Almost every weekend he goes to the minor league baseball games. He needs to relax and get away. I wish he would join and speak with other Care Givers. I also have PTSD so he has 2 things to deal with. My dreams wake me screaming waking him again. Does anyone feel kinda the same? Thank You

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Hi @kimspr3 Wonderful to get your perspective here! It is invaluable! As a caregiver I rarely thought to look at my efforts through the lens of my wife's eyes. And I should have! You speak well of this situation and I envy you for that!

I hope others chime in from their perspective as patient! It is super valuable!

I know I often wondered if what I was doing was enough, good enough, or if it was appreciated. You have given me some validation on my efforts and how my wife may have viewed them

I cannot thank you enough! How are you doing these days?

REPLY
1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 30, 2019
In reply to @vickys "I can’t remember if I shared this, but I finally finished the book “The Unexpected Journey..." + (show)
@vickys

I can’t remember if I shared this, but I finally finished the book “The Unexpected Journey of Caring” (which I LOVED). It has a big section on the enormous value of online caregiving groups, above in person groups.
If anyone has time to read, even just those odd moments in the wee hours, it is a gift of a book for anyone in a caregiving role. It has changed or really validated how I feel about so much.

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Thank you, @vickys I will have to look that book up! Sounds like a very valuable viewpoint and I look forward to reading it!

Thank you again!

REPLY
vickys | @vickys | Jun 30, 2019
In reply to @kimspr3 "I show my husband a lot of love. Lots of thank you's. It's hard to stand..." + (show)
@kimspr3

I show my husband a lot of love. Lots of thank you's. It's hard to stand but I always try to make good meals to come home to. I try to do what I can, he's very tired. He was always loving until I got this disease and he gradually changed. After reading the posts, no more saying I'm sorry. I still have my sense of humor. I text him loving things during the day. He does say thank you.

Jump to this post

It’s a chapter in life.
We’re, many of us, going through this earlier in life than many our friends and other family members will. Some may never. But we will forever be different for it.
And for those of us who are married and providing care for our spouses: well, of course we do.

REPLY
1 reply
vickys | @vickys | Jun 30, 2019
In reply to @vickys "It’s a chapter in life. We’re, many of us, going through this earlier in life than..." + (show)
@vickys

It’s a chapter in life.
We’re, many of us, going through this earlier in life than many our friends and other family members will. Some may never. But we will forever be different for it.
And for those of us who are married and providing care for our spouses: well, of course we do.

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And I should add, the same is true for those of us who are caring for parents, siblings, friends. We do it because it needs to be done and because we can. And we are different for it!

REPLY
2 replies
debiobrien | @debiobrien | Jul 1, 2019
In reply to @vickys "And I should add, the same is true for those of us who are caring for..." + (show)
@vickys

And I should add, the same is true for those of us who are caring for parents, siblings, friends. We do it because it needs to be done and because we can. And we are different for it!

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we are forever different and i will always carry it in my heart knowing i did all i could for my mom and aunt once they pass. no one else in the family is helping but i know i did what was right and what i wanted to do for my mom and aunt. sold my home and gave up friends and everything to move here by them to watch over them and take care of them. I know they would have done the same for me.

REPLY
kimspr3 | @kimspr3 | Jul 2, 2019
In reply to @vickys "And I should add, the same is true for those of us who are caring for..." + (show)
@vickys

And I should add, the same is true for those of us who are caring for parents, siblings, friends. We do it because it needs to be done and because we can. And we are different for it!

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Hello Vicky, We do become different and learn from it. But at times hurt. Years ago a friend had Leukemia. She's good now! My choice, He mother was so frighted she would loose her daughter. Husband and I listened, became close, I loved her so much. Spent time with her. So was upset over her family arguing over my friends care. With her permission I called American Cancer Society, how to help them. With her permission they contacted the family. I'm telling this for a reason. My friend the daughter asked me to put makeup on her we had fun. I did the laundry for her children, helped with the dog, had her children for dinner. Hospital is in NYC so a friend and I drove there twice a week. She has a great sense of humor, it helped a lot!! I took care because I wanted to no one asked me. After she was in remission, still is, Her brother gave her a Hugh 50th Birthday Party. Friend and brother called people up to thank them, I was never called. It hurt me a lot, I got over it. My husband was lived but calmed down. I know I did the right thing and NO ONE can take that away from me. If it were not for my friends health I would never have gotten so close to her Mother. I called her my second mom. When she passed away I lost that extra special person in my life. We stayed friends but not in the same way. No accolades, a hug.

REPLY
1 reply
kimspr3 | @kimspr3 | Jul 2, 2019
In reply to @kimspr3 "Hello Vicky, We do become different and learn from it. But at times hurt. Years ago..." + (show)
@kimspr3

Hello Vicky, We do become different and learn from it. But at times hurt. Years ago a friend had Leukemia. She's good now! My choice, He mother was so frighted she would loose her daughter. Husband and I listened, became close, I loved her so much. Spent time with her. So was upset over her family arguing over my friends care. With her permission I called American Cancer Society, how to help them. With her permission they contacted the family. I'm telling this for a reason. My friend the daughter asked me to put makeup on her we had fun. I did the laundry for her children, helped with the dog, had her children for dinner. Hospital is in NYC so a friend and I drove there twice a week. She has a great sense of humor, it helped a lot!! I took care because I wanted to no one asked me. After she was in remission, still is, Her brother gave her a Hugh 50th Birthday Party. Friend and brother called people up to thank them, I was never called. It hurt me a lot, I got over it. My husband was lived but calmed down. I know I did the right thing and NO ONE can take that away from me. If it were not for my friends health I would never have gotten so close to her Mother. I called her my second mom. When she passed away I lost that extra special person in my life. We stayed friends but not in the same way. No accolades, a hug.

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I think it's in our DNA. I don't know if you read what I said, chosen one in the family. There is always that one family member that takes on the responsibility of caring for a loved one and not so loving loved one. My family did not help me with my mother including my daughter. I guess the me and I generation. Wishing you a good evening.

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