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.

@IndianaScott

You hit on a very valid point in your post, @vickys Fellow caregivers understand and above all understand the love we put into our caregiving as well as the frustrations we cope with!

Did you find sharing with fellow caregivers beneficial? I couldn't do groups in person due to my wife's needs, but I sure loved finding an online caregiving communtiy here.

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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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@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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I am a care giver for my mom and her twin sister my aunt and they are 92 years of age. I think the best way i can answer your questions as being a caregiver is to have a stronger connection with him. look him in the face and let him know you love him and appreciate what he is doing for you. he is doing all this out of love so don't break the connection and don't feel guilty because you need his help. it sounds like he is happy to be able to be there for you. feeling guilty makes it harder on you. my mom and aunt do the same thing to me and it frustrates me as i just want them to know i love them and am happy to be there for them and no one needs to feel any quilt. My mom sacrificed to raise me and now its my time to sacrifice for her and i do it lovingly as i know your husband is. It is good for him to have a little of HIS "me time" as i just started to do myself. I also have PTSD so my mom and aunt have to understand that i have my days to. stop saying your sorry and replace it with i love you and appreciate you. everyone likes to HEAR they are appreciated. i will pray for you that things get easier for the both of you.

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@debiobrien

I am a care giver for my mom and her twin sister my aunt and they are 92 years of age. I think the best way i can answer your questions as being a caregiver is to have a stronger connection with him. look him in the face and let him know you love him and appreciate what he is doing for you. he is doing all this out of love so don't break the connection and don't feel guilty because you need his help. it sounds like he is happy to be able to be there for you. feeling guilty makes it harder on you. my mom and aunt do the same thing to me and it frustrates me as i just want them to know i love them and am happy to be there for them and no one needs to feel any quilt. My mom sacrificed to raise me and now its my time to sacrifice for her and i do it lovingly as i know your husband is. It is good for him to have a little of HIS "me time" as i just started to do myself. I also have PTSD so my mom and aunt have to understand that i have my days to. stop saying your sorry and replace it with i love you and appreciate you. everyone likes to HEAR they are appreciated. i will pray for you that things get easier for the both of you.

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@debiobrien I just love your post! It says so much to all of us. My husband has been my caretaker and I know it’s been hard on him, especially when couldn’t leave me alone. Now he feels like he can go camping or fishing for a weekend and I’ll be ok. I make sure to thank him everyday and tell him how much I appreciate him and what he does for me. You said you’ve started to have some “me time”. What do you do that works for you to restore yourself and get re-energized?

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I’m a caregiver to my wife and we learned that replacing “I’m sorry” with “Thank you” changed the dynamics for both of us.

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@becsbuddy

@debiobrien I just love your post! It says so much to all of us. My husband has been my caretaker and I know it’s been hard on him, especially when couldn’t leave me alone. Now he feels like he can go camping or fishing for a weekend and I’ll be ok. I make sure to thank him everyday and tell him how much I appreciate him and what he does for me. You said you’ve started to have some “me time”. What do you do that works for you to restore yourself and get re-energized?

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well i realized i was really stressed not from the care giving just life itself so i started last week going to get a massage. A therapeutic one deep muscle not a foo foo one . I have fibromyalgia and my doctor said it would help me and also relieve some stress and make me feel better overall. tomorrow will be my next one. thought i would try 1 a week for a month and then maybe 2 a month after that as it gets pricey. I am also planning a few day trips just to get away and have fun or do nothing. my mom wants to try fishing so we may try some fishing soon to just for some me and her time without my aunt as she is the one that is not able to care for herself my mom is in pretty good shape better than me. im thinking of maybe trying some bingo but mom likes that idea to but i want to try and do things with her that she also enjoys and have some nice and fun memories and i also think it will be good for her to get out. we are also talking about going to a movie every now and then. you are doing the right thing by letting hubby know you love him and appreciate them thats all we need to know is we are helping and you appreciate it. no negative stuff. I also go to yard sales every weekend and i love that. thats my me time to. it all works out and has a way of balancing. im sure one day it will get harder when my mom can no longer take care of herself as we all live alone right now but close by each other. but im sure it will all work out..

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@klaken

I’m a caregiver to my wife and we learned that replacing “I’m sorry” with “Thank you” changed the dynamics for both of us.

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thats wonderful thats all you both need to hear form each other. no since in being sorry or guilty we will all age and get there ourselves. she is lucky to have you and you are lucky to have her. prayers and blessings to you both

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@IndianaScott

You hit on a very valid point in your post, @vickys Fellow caregivers understand and above all understand the love we put into our caregiving as well as the frustrations we cope with!

Did you find sharing with fellow caregivers beneficial? I couldn't do groups in person due to my wife's needs, but I sure loved finding an online caregiving communtiy here.

Jump to this post

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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@klaken

I’m a caregiver to my wife and we learned that replacing “I’m sorry” with “Thank you” changed the dynamics for both of us.

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Recently I started giving my husband a quiet, peaceful hug each day as I I dress him. It has had an unspoken impact on both of us.

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@vickys

Recently I started giving my husband a quiet, peaceful hug each day as I I dress him. It has had an unspoken impact on both of us.

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thats wonderful and i know he feels that in his heart. and its healing for you and take any kind of negative feelings on either side away and replaces it with love. sending love and blessing to you both,

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@klaken

I’m a caregiver to my wife and we learned that replacing “I’m sorry” with “Thank you” changed the dynamics for both of us.

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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 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

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@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.

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@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.

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@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?

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@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!

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