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.

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

cmael | @cmael | Jul 31, 2019
In reply to @kimspr3 "I'm having a difficult time expressing myself. I have had cancer, I'm fine now. Before treatment..." + (show)
@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!

Jump to this post

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!

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 1, 2019
In reply to @2109 "Hi, sorry to hear of your situation, I'm a caregiver too. I have been taking care..." + (show)
@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

Jump to this post

@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.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 1, 2019

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

REPLY
mykarma | @mykarma | Mar 18, 2022

I know this is an old post and things have changed for you, but you’ve hit the nail on the head with me! I thought I was alone!
I am so tired! My fiancé of two months had came for a weekend visit. I notice right away he was jaundice. I too was a nurse, disabled now. But I got this man that hadn’t been to the Dr. , in what he thought was good health, in 20 years. In a flash we went from being high on a new love, to him on the liver transplant list with labs out the roof! It’s very hard to separate the sweet heart thing/ and being the nurse. I have been sick all my life with MS and Myasthenia, but I’m a fighter! He will not do anything the drs says without me getting mad about it, can’t even get him to take a bath! He’s not depressed. He doesn’t feel well I know, but he has me jumping up and down like a jack in the box. I’m so frustrated, I feel guilt too, but at times I think I’m the one that is going to go way down hill before him! And he doesn’t seem to care! No I love you, no touching me, hugging me, nothing but will you do this or that constantly! I feel like I’m taking care of a patient, that is a stranger to me, but I never get to go to my home and take care of me. I’ve fought so hard for my health problems not to take my quality of life or put me in a wheelchair, and he is just completely lazy, that’s a good word for it, about everything! I’ve told him, showed him, if he don’t go though these hoops the transplant team requires, they aren’t going to trust him with a special liver! He don’t listen! I’m just a know it all Ms Nurse to him.
I’m his support person, you can’t change them without the transplant team frowning. I don’t want his demise to be my fault, I would carry enough guilt as it is.
I lost my 23 year old son and my husband, six months apart. He is the first I fell in love with since my loses, of ten years before. But I wonder if I can do this. I have to I know, but I’m miserably depressed and in a hell I can’t get out of.

Thanks for letting me vent.
I pray your situation has become peaceful in Gods way❤️

REPLY
3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 18, 2022
In reply to @mykarma "I know this is an old post and things have changed for you, but you’ve hit..." + (show)
@mykarma

I know this is an old post and things have changed for you, but you’ve hit the nail on the head with me! I thought I was alone!
I am so tired! My fiancé of two months had came for a weekend visit. I notice right away he was jaundice. I too was a nurse, disabled now. But I got this man that hadn’t been to the Dr. , in what he thought was good health, in 20 years. In a flash we went from being high on a new love, to him on the liver transplant list with labs out the roof! It’s very hard to separate the sweet heart thing/ and being the nurse. I have been sick all my life with MS and Myasthenia, but I’m a fighter! He will not do anything the drs says without me getting mad about it, can’t even get him to take a bath! He’s not depressed. He doesn’t feel well I know, but he has me jumping up and down like a jack in the box. I’m so frustrated, I feel guilt too, but at times I think I’m the one that is going to go way down hill before him! And he doesn’t seem to care! No I love you, no touching me, hugging me, nothing but will you do this or that constantly! I feel like I’m taking care of a patient, that is a stranger to me, but I never get to go to my home and take care of me. I’ve fought so hard for my health problems not to take my quality of life or put me in a wheelchair, and he is just completely lazy, that’s a good word for it, about everything! I’ve told him, showed him, if he don’t go though these hoops the transplant team requires, they aren’t going to trust him with a special liver! He don’t listen! I’m just a know it all Ms Nurse to him.
I’m his support person, you can’t change them without the transplant team frowning. I don’t want his demise to be my fault, I would carry enough guilt as it is.
I lost my 23 year old son and my husband, six months apart. He is the first I fell in love with since my loses, of ten years before. But I wonder if I can do this. I have to I know, but I’m miserably depressed and in a hell I can’t get out of.

Thanks for letting me vent.
I pray your situation has become peaceful in Gods way❤️

Jump to this post

@mykarma I’m glad that you felt you could vent. You have a lot on your shoulders with your fiancé and your own health. I’m hoping that your health isn’t taking a backseat to his health. Has the transplant team talked with him and set some requirements? You can’t do it all.
I’m going to ask @rosemarya to join the conversation. She had a liver transplant several years ago and will have lots to tell you. Please remember that Mayo Connect is always here, should you need to vent. I’m sure that you are doing the best that you can so don’t beat yourself up too much. Is there something you like to do that can help relax you?

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 19, 2022
In reply to @mykarma "I know this is an old post and things have changed for you, but you’ve hit..." + (show)
@mykarma

I know this is an old post and things have changed for you, but you’ve hit the nail on the head with me! I thought I was alone!
I am so tired! My fiancé of two months had came for a weekend visit. I notice right away he was jaundice. I too was a nurse, disabled now. But I got this man that hadn’t been to the Dr. , in what he thought was good health, in 20 years. In a flash we went from being high on a new love, to him on the liver transplant list with labs out the roof! It’s very hard to separate the sweet heart thing/ and being the nurse. I have been sick all my life with MS and Myasthenia, but I’m a fighter! He will not do anything the drs says without me getting mad about it, can’t even get him to take a bath! He’s not depressed. He doesn’t feel well I know, but he has me jumping up and down like a jack in the box. I’m so frustrated, I feel guilt too, but at times I think I’m the one that is going to go way down hill before him! And he doesn’t seem to care! No I love you, no touching me, hugging me, nothing but will you do this or that constantly! I feel like I’m taking care of a patient, that is a stranger to me, but I never get to go to my home and take care of me. I’ve fought so hard for my health problems not to take my quality of life or put me in a wheelchair, and he is just completely lazy, that’s a good word for it, about everything! I’ve told him, showed him, if he don’t go though these hoops the transplant team requires, they aren’t going to trust him with a special liver! He don’t listen! I’m just a know it all Ms Nurse to him.
I’m his support person, you can’t change them without the transplant team frowning. I don’t want his demise to be my fault, I would carry enough guilt as it is.
I lost my 23 year old son and my husband, six months apart. He is the first I fell in love with since my loses, of ten years before. But I wonder if I can do this. I have to I know, but I’m miserably depressed and in a hell I can’t get out of.

Thanks for letting me vent.
I pray your situation has become peaceful in Gods way❤️

Jump to this post

@mykarma, I am a transplant recipient, and i want to extend my welcome to Connect. I agree with Becky (@becsbuddy) that you are carrying a lot on your shoulders, and it is okay to vent here.
My husband was my caregiver for my transplant and as my condition deteriorated, he had to become more and more involved in my day-to-day care. It is not an easy task and throughout the entire process, my transplant team stressed that he take care of himself because his health was essential for his caregiving. One of his roles as caregiver was to attend my appointments with me so we could learn together. and so he could support me along the way. I realize that if your fiancé' lives at a distance this might be difficult, but it is an important aspect of caregiving. Have you been to any appointment where your caregiver role for a patient with liver failure was explained?

I would like to share a Q&A that was posted in 2018 with Steve Vorseth, a Licensed Master Social Worker in the transplant center at Mayo Clinic’s campus in Phoenix. It covers the vital role the caregiver plays before and after transplant surgery.
" Having a dedicated caregiver is required for transplant. ..You may have more than one caregiver during your transplant journey... caregivers need to be in good physical and emotional health and should be able to get you to and from your appointments, help with medications, and help with daily routines. "
He goes on to say that social workers are available for the patient and the caregiver who can work with you to focus on how to make the process easier for everyone involved.
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/caregiver-qa-with-steve-vorseth-l-m-s-w/
Quality of life for both patient and caregiver was stressed to my husband and me throughout my entire transplant process. I was assigned a pre transplant nurse, and there was always a social worker who checked in regularly and was easily available.
@mykarma, I hope that you will take a look at the article I shared because it can provide some thoughts for your role.
When is your fiance' s next appointment? Will you be going with him? What are your thoughts about asking to speak with the social worker in his transplant department?

REPLY
1 reply
dsd1939 | @dsd1939 | Mar 19, 2022
In reply to @mykarma "I know this is an old post and things have changed for you, but you’ve hit..." + (show)
@mykarma

I know this is an old post and things have changed for you, but you’ve hit the nail on the head with me! I thought I was alone!
I am so tired! My fiancé of two months had came for a weekend visit. I notice right away he was jaundice. I too was a nurse, disabled now. But I got this man that hadn’t been to the Dr. , in what he thought was good health, in 20 years. In a flash we went from being high on a new love, to him on the liver transplant list with labs out the roof! It’s very hard to separate the sweet heart thing/ and being the nurse. I have been sick all my life with MS and Myasthenia, but I’m a fighter! He will not do anything the drs says without me getting mad about it, can’t even get him to take a bath! He’s not depressed. He doesn’t feel well I know, but he has me jumping up and down like a jack in the box. I’m so frustrated, I feel guilt too, but at times I think I’m the one that is going to go way down hill before him! And he doesn’t seem to care! No I love you, no touching me, hugging me, nothing but will you do this or that constantly! I feel like I’m taking care of a patient, that is a stranger to me, but I never get to go to my home and take care of me. I’ve fought so hard for my health problems not to take my quality of life or put me in a wheelchair, and he is just completely lazy, that’s a good word for it, about everything! I’ve told him, showed him, if he don’t go though these hoops the transplant team requires, they aren’t going to trust him with a special liver! He don’t listen! I’m just a know it all Ms Nurse to him.
I’m his support person, you can’t change them without the transplant team frowning. I don’t want his demise to be my fault, I would carry enough guilt as it is.
I lost my 23 year old son and my husband, six months apart. He is the first I fell in love with since my loses, of ten years before. But I wonder if I can do this. I have to I know, but I’m miserably depressed and in a hell I can’t get out of.

Thanks for letting me vent.
I pray your situation has become peaceful in Gods way❤️

Jump to this post

I'm going to risk a comment. As a new caregiver for my wife with esophageal cancer I am finding guidance and support at this site. Sounds like you fiancé needs a good 'talking to' by a tough drill sargent. As a male, I can relate to his behavior as I've been guilty of it many times. I dearly hope you find the help you need.

REPLY
1 reply
ls1313 | @ls1313 | Mar 19, 2022

Hi! I’m a caregiver to 2 adult children who were exposed to alcohol before birth. Our daughter’s mom did street drugs, alcohol, homeless & gave birth to a 3#12oz girl. We adopted her at 25 months, 15 pounds & 27” tall. Our son wasn’t exposed to as much, but it was enough to kill his executive function, he can’t read (5th grade level), write (4th grade level or deal with numbers (5th grade). He’s a senior in high school. So I care for them, plus I care for myself, having fibromyalgia, diabetes 2, chronic vertigo (13 years), one dead ear from the acoustic neuroma that caused the vertigo, severe hearing loss in the ear that works, etc. My husband has the insurance for us & works his tail off for it. Our daughter got SSI, Medicaid & her food card on the first try. I don’t know what to do with her. She only wants to volunteer at one place—our vet. There’s a LONG list of people who want to do that. Plus, she only 4’11” & c98 pounds. So I’m the care giver, problem solver, mom to 2 Russians. We stand for the Ukraine here.

REPLY
1 reply
mykarma | @mykarma | Mar 20, 2022
In reply to @dsd1939 "I'm going to risk a comment. As a new caregiver for my wife with esophageal cancer..." + (show)
@dsd1939

I'm going to risk a comment. As a new caregiver for my wife with esophageal cancer I am finding guidance and support at this site. Sounds like you fiancé needs a good 'talking to' by a tough drill sargent. As a male, I can relate to his behavior as I've been guilty of it many times. I dearly hope you find the help you need.

Jump to this post

Thank you!
I do feel guilty, maybe something I don’t see.
I myself have had to rely on others when I was to sick, and very grateful. I pray one of us starts understanding soon! Thank you so much!

REPLY
mykarma | @mykarma | Mar 20, 2022
In reply to @becsbuddy "@mykarma I’m glad that you felt you could vent. You have a lot on your shoulders..." + (show)
@becsbuddy

@mykarma I’m glad that you felt you could vent. You have a lot on your shoulders with your fiancé and your own health. I’m hoping that your health isn’t taking a backseat to his health. Has the transplant team talked with him and set some requirements? You can’t do it all.
I’m going to ask @rosemarya to join the conversation. She had a liver transplant several years ago and will have lots to tell you. Please remember that Mayo Connect is always here, should you need to vent. I’m sure that you are doing the best that you can so don’t beat yourself up too much. Is there something you like to do that can help relax you?

Jump to this post

Thank you Becky! My health is getting beat up here, have needed a knee replacement, and you know that can’t happen know. I’ve start chalk painting….everything in the house! Trying to escape my own home. It’s a mess, but helps. Just venting has been a big help.! I’m afraid to say anything to the transplant gang, I don’t want to put any doubts in there head.
But so thankful I’ve found this sit!
Thank you!

REPLY
View MoreView Less
Please sign in or register to post a reply.