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.

Hi, sorry to hear of your situation, I'm a caregiver too. I have been taking care of my younger brother ( he has brain damage since he was 2 years old..He has lived with me for 49 years. Our parents passed away when he was 19 yrs old.. My husband was very understanding at the time and of making the decision of Group Home or with family.. we chose to keep him out of the Group Home then. My Husband passed away 4 yrs ago.. Now it is just me.
At times it gets to be very difficult for appointments and caring for him. He is 68 years old now. I understand what you are going through. I too love my younger Brother very much. Sincerely, Sylvia

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@kimspr3

My brother died 2003, Since we both had PTSD in very different ways. When he was in ICU, still able to correspond he was my big brother but put me down so much. I needed to be close to him, asked him if I could lay down with him like old times, he said no! Asked him If I could hold his hand, no! I felt like a little girl again but this time my good ole brother rejected me again. After he died my sister-in-law would throw that in my face. I made the worst mistake by telling her what my brother said to me. My parents Grandchildren never went to their funerals. At my brothers funeral his 3 children spoke about their father BUT his sister, mother, niece were never mentioned. I should have stood up, tactfully mentioned that he had the other members of family. dam, I'm crying now. My father started drinking after he married his second wife 30 years younger 5 years older than me. She cheated on my father. She married for what he had $$. foolish! I with you both a good evening!

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Hi @kimspr3 Your post brought a flood of memories back to me. First how disease can take control of a person and change them in ways we wish they never did. When my wife was in a coma her sister told our daughter and I we should 'just let her die' and not do emergency surgery. We did anyway and some years later my wife overheard me telling that to our son on the phone and things with her sister never healed.

The most memories, though, came back regarding my wife's funeral. She was largely abandoned by family and friends during her years of illness. My side of the family thought she was 'faking it' and I was exaggerating her condition 'for sympathy'. They never changed that view. Friends and other family simply chose to ignore her while she was fighting her war. Late in her illness my wife decided to design her own Celebration of Life. She asked me to write it all down and share it with our children so they knew what she wanted. Then she asked me to get a second sheet of paper to write down the people I was to invite to her Celebration. I said 'honey, folks usually don't invite people to a service, anyone who wants to just shows up.' She said 'not mine! I do not want anyone in our home blowing smoke up your a*s about how much they cared about me when I was sick, after I am dead.' She gave me her list. Her notice said 'a service will follow' and we did that service private for those invited only. My wife knew well that would happen, too! The first person I heard from was a sister who blasted me about not being there saying 'well, we wanted to be there to show you how much we cared'.

14 years too late!

Thanks for sharing and letting me get this off my chest — I feel better already! These things I have come to accept, but accepting never means they didn't hurt.

Strength, courage, and peace!

PS Thanks for the laugh — and I'll add 'I tawt I taw a puddy tat!'

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I pray that all of you are able to defuse your own personal tension and mine the depths of your love to get you through each day. You are already living out your grief, which is part of your daily pain. It helps to know this. Know that you really can't control anyone else, only love and help them to the best of your ability (which is often never enough). My wife had vascular dementia and in the last few years became a "rage-a-holic" – a situation that at times was hardly tolerable. At times, I had to lock myself in a room. Near the end she was beating doors and walls, throwing things, pulling knives, stabbing furniture and taking her therapy dog on mystery drives around town, professing to search for the police to report my ill treatment of her dog, which was in her mind. It was nothing less than the worse that I could imagine. In the end, I earned the support of the community and the police, which helped to take away some of the heartrending agony, self-doubt, and the feelings of guilt of never being able to do enough. You must forgive yourself for being human, and take a measure of healing in knowing that you are able to truly help, when few others would, or could. In the end, you have and continue to supply what is required in the moment.

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@kimspr3

Sorry, my "with" sounds like "TWEETY BIRD".

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I think it was my "with?"

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@IndianaScott

Hi @kimspr3 Your post brought a flood of memories back to me. First how disease can take control of a person and change them in ways we wish they never did. When my wife was in a coma her sister told our daughter and I we should 'just let her die' and not do emergency surgery. We did anyway and some years later my wife overheard me telling that to our son on the phone and things with her sister never healed.

The most memories, though, came back regarding my wife's funeral. She was largely abandoned by family and friends during her years of illness. My side of the family thought she was 'faking it' and I was exaggerating her condition 'for sympathy'. They never changed that view. Friends and other family simply chose to ignore her while she was fighting her war. Late in her illness my wife decided to design her own Celebration of Life. She asked me to write it all down and share it with our children so they knew what she wanted. Then she asked me to get a second sheet of paper to write down the people I was to invite to her Celebration. I said 'honey, folks usually don't invite people to a service, anyone who wants to just shows up.' She said 'not mine! I do not want anyone in our home blowing smoke up your a*s about how much they cared about me when I was sick, after I am dead.' She gave me her list. Her notice said 'a service will follow' and we did that service private for those invited only. My wife knew well that would happen, too! The first person I heard from was a sister who blasted me about not being there saying 'well, we wanted to be there to show you how much we cared'.

14 years too late!

Thanks for sharing and letting me get this off my chest — I feel better already! These things I have come to accept, but accepting never means they didn't hurt.

Strength, courage, and peace!

PS Thanks for the laugh — and I'll add 'I tawt I taw a puddy tat!'

Jump to this post

I'm having a difficult time expressing myself. I have had cancer, I'm fine now. Before treatment began the dr., social worker had a little get together to explain what is a head for us. I distinctly remember the Social Worker saying, when you have cancer your loved ones "loved ones!" have it also threw you. I saw families, friends in the "Chemo Room" they needed to be there, patient needed it. My daughter was there. Brother lived 15 min. away from the hospital, his wife not far, their children N.A. they could have easily stopped during treatment. Never helped my husband, brought a morsel. When he had cancer I was there even brought my dog for his comfort. What I admire about your wife know matter how ill she felt she took control away from them, did the right thing. Her wishes were yours and your children. I hope that brought her some peace.

I don't know how long I will be here I will never have that SATISFACTION, I need so badly. I met my brothers future wife when I was 13, gradually he became her. My parents and hers fought constantly. A funny thing happened when they got married. It was a Black Tie wedding. Mens pants were shorter and you could see their socks. My father walked down the isle wearing white socks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! There was a bit of a tiff, the reception went on.

I have a very hard time excepting the painful things in my life, wish I could. Validation is to me an important word that has never been given to me.

I hope I expressed myself ok. Let's give us a HIGH FIVE!

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@kimspr3

I'm having a difficult time expressing myself. I have had cancer, I'm fine now. Before treatment began the dr., social worker had a little get together to explain what is a head for us. I distinctly remember the Social Worker saying, when you have cancer your loved ones "loved ones!" have it also threw you. I saw families, friends in the "Chemo Room" they needed to be there, patient needed it. My daughter was there. Brother lived 15 min. away from the hospital, his wife not far, their children N.A. they could have easily stopped during treatment. Never helped my husband, brought a morsel. When he had cancer I was there even brought my dog for his comfort. What I admire about your wife know matter how ill she felt she took control away from them, did the right thing. Her wishes were yours and your children. I hope that brought her some peace.

I don't know how long I will be here I will never have that SATISFACTION, I need so badly. I met my brothers future wife when I was 13, gradually he became her. My parents and hers fought constantly. A funny thing happened when they got married. It was a Black Tie wedding. Mens pants were shorter and you could see their socks. My father walked down the isle wearing white socks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! There was a bit of a tiff, the reception went on.

I have a very hard time excepting the painful things in my life, wish I could. Validation is to me an important word that has never been given to me.

I hope I expressed myself ok. Let's give us a HIGH FIVE!

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Kimspr3. Your satisfaction should come from within, knowing that you are a good person and that you’ve done the best you can. That cannot come from another person. High five!

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@2109

Hi, sorry to hear of your situation, I'm a caregiver too. I have been taking care of my younger brother ( he has brain damage since he was 2 years old..He has lived with me for 49 years. Our parents passed away when he was 19 yrs old.. My husband was very understanding at the time and of making the decision of Group Home or with family.. we chose to keep him out of the Group Home then. My Husband passed away 4 yrs ago.. Now it is just me.
At times it gets to be very difficult for appointments and caring for him. He is 68 years old now. I understand what you are going through. I too love my younger Brother very much. Sincerely, Sylvia

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@2109 Welcome to the caregiving pages of MayoClinicConnect. I’m asking @johnbishop for help in finding the pages that might be of help and interest to you. May I ask you a few questions? You have cared for your brother for 49 years—did you and your husband have help? Do you have help now? Please tell us more. So many on this site would love to learn what’s worked and what hasn’t.

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Hello Sylvia @2109 — I would like to add my welcome to Connect along with @becsbuddy. I found a page that might be relevant to your situation. It has links to other helpful sites in the article that may offer some information or help for you.

What to Expect When You Become a Sibling’s Sole Caregiver
https://www.vice.com/en_us/article/gymw7m/what-to-expect-when-you-become-siblings-sole-caregiver

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