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Caregiving: I’m frustrated and exhausted.

Caregivers | Last Active: Mar 27, 2022 | Replies (223)

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@rosemarya

@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?

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Replies to "@mykarma, I am a transplant recipient, and i want to extend my welcome to Connect. I..."

Rosemary, thank you! I will read all the info for sure! My fiancé does live with me know, no way he could be alone! I go, arrange, do all the talking, meds, and daily care for him. Everything! We went from sweet intimacy to me having to change his diaper all within two weeks! He is doing better now, MELD score from 38 to 22! But he does nothing for himself, which he could! He does it for OT and PT, but not for me! I’m a retired RN, and aware of what my expectations of a good caregiver is, and I am a very good one. But no help from his family, no help or gratitude from him. It’s frustrating and wearing me out. But he has absolutely no one else. It puts a lot of pressure on me when I’m very sick myself.