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Caregiving: I’m frustrated and exhausted.
Caregivers | Last Active: Mar 27, 2022 | Replies (223)Comment receiving replies
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❤️
Replies to "I know this is an old post and things have changed for you, but you’ve hit..."
@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?
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.
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@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?