Post transplant care giver Exhaustion

Whew! That is quite a rigorous journey. Perhaps it is time to call for some help. Friends, neighbors, or family hopefully. If none of that is possible, perhaps you can hire a temporary health care worker to give you some much needed down time and sleep. Sending you restful vibes and hoping you get some relief soon.

@anthony1916 oh my goodness it’s no wonder you’re completely exhausted. You and your wife have been through so much. In addition to being a liver transplant recipient myself (1.5 years ago) and grasping how overwhelming and scary it can be, I am a social worker. If I met you in the hospital before your wife’s discharge, I’d be encouraging you to accept help with caregiving especially during early homecoming. I’d be firing up the phone finding out what care your insurance allows, and what local agencies could assist. I would wonder about a step down to inpatient rehab for your wife so she could continue to heal with professional care, while you got your bearings at home. I would give you time to vent and cry and shake your fists at the universe for putting you through such a long and frightening experience. I’d find a caregiver support group for you and a therapist if you were interested. If your wife was 60 or older I’d look into services for “elders” as those can be more plentiful and generous.

I think it’s so important that as a caregiver for so many years coping with post transplant care- challenging even in “better” circumstances- you have some professional assistance in the aftermath. This site is a really helpful one too. I honor you for your devotion to your wife and am happy that you have some relief and hope. Peace and care to you. Kate

To Anthony1916. Though I am a transplant recipient, I was very aware of caregiver burnout. I put the word to all my friends across the nation and my neighbors for moments of caregiving. You must know the joy of helping those you care about. So will your friends and neighbors. I had a cadre of people willing to give a day or a weekend and even a week to relieve the primary caregiver. They all thanked me for the opportunity to give some of their time. One lifelong friend came from Colorado to Phoenix to relieve 8 days of caregiving. My stepbrother came from Dallas for a long weekend. Friends from Tucson hopped up to help in so may ways including weekend breaks.
Hope this helps, Barbara

@anthony1916 Welcome to Mayo Clinic Connect! As you can see, by reaching out to us, you have gotten some very useful tips. @katebw showed you how her training and job would help you handle the situation.

When my husband had his kidney transplant Oct 2016, we were in the dating phase. He spent his first 30 days after the gift of life, in a condo near the hospital. His daughter and I split up the week so one of us was always there. It was a five hour drive each way for me, and I spent 4 days a week there. When he returned home, he had friends who would stop in visit and check up on him. I still took him to all his post-transplant appointments.

Reach out to friends, family and services in your community. If you are aligned with a faith community, also check there for people who can give you a respite. Caregiver exhaustion is a real thing! I know you have heard the saying before, "you need to care for yourself first, or you cannot care for another". How are you doing today?
Ginger

@anthony1916 I want to also add my welcome to you and your wife. Congratulations on the liver transplant. Hopefully this will be the start of better times for you and your wife. I don’t know much about liver transplants. I had a pancreas transplant nearly 18 years ago. After care following a transplant presents its own challenges. Other members and mentors have recommended some great tips that will be beneficial. One thing I’d like to add is that within this site is a group & discussions focused on supporting Caregivers. There is another discussion within the Transplant group offering post transplant tips. I haven’t learned how to post links. Can you poke around in this site to find these helpful resources?

Hi @anthony1916 Just popping into @cehunt57’s response to you about some other discussions here in the forum relating to transplant caregivers. My husband was my caregiver during my bone marrow transplant. He won’t admit it, but that experience aged him with all the worry and concern, the uncertainty, etc… I don’t have to give you the particulars…you’re living it. You’re doing an admirable job and it sure gives a new meaning to ‘for better or for worse’ right? But you do need to also take care of yourself. So hopefully some of these conversations will give you some guidance from people who have been there. Hugs.

Are there any transplant caregivers out there?
https://connect.mayoclinic.org/discussion/are-there-any-transplant-caregivers-out-there/
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I’m a transplant caregiver. Let’s connect and share:
https://connect.mayoclinic.org/discussion/my-post-from-joining-the-caregiver-group/
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What to expect as a transplant caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/

@anthony1916 - I located a few of my favorites about living with an organ transplant.

Here is a support discussion that includes many helpful/ real life suggestions by patients who have received transplants. I so much appreciate all members who so generously have shared their experiences to help others. I invite any and all members to join in the discussion with more ideas and questions.

- Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
and
The ideas shared in the above patient conversation were used to create a blog article (written by the Mayo staff) and newly updated here in this this Blog article.:
- Top Transplant Tips and Hacks https://connect.mayoclinic.org/blog/transplant/

Has anybody found one of their tips or hacks in the article yet?