What was your caregiver situation while getting a transplant?

Posted by katebw @katebw, Aug 23 12:59pm

I've been thinking about this for a few days — someone, it might have been @hello1234 ? – mentioned being widowed. I am widowed too. I am 54 and my husband died suddenly from an acute cerebral aneurysm when he was 44, I was 41, and our daughter was 8. This was 13 years ago last week. For the last several years I've been with a lovely partner who has been very supportive. But we do not live together, we met during middle age, and he loves my now 21 year old daughter (senior in college!) but he's not her father. I want to open up discussion for those of us with more complicated caregiver situations. This can range from really spotty to solid but still missing something or someone. When I was waiting for my transplant and feeling absolutely terrible, trying to hold my own so that my daughter — older now but still needs a parent for this chapter of life — I've had an unconventional circumstance. When it was clear that it was not safe for me to be alone — and my daughter was transitioning to her summer job then back to college — I lived with my 85 year old mother who had good space and I don't think they make mothers like mine anymore! She's incredible. But she was not my husband, and I missed him more than I had in over a decade.

What I'm trying to say is that coping with our needed caregivers — even after we feel pretty stable — is a challenge. It's probably a challenge even when you have your devoted spouse at your side as relationships are really complicated.

Does anyone have any caregiving challenges to share?

Interested in more discussions like this? Go to the Transplants group.

Hi @katebw 😊
It is wonderful to meet you! You just explained my life. (The only difference is that I don't have any children). Everything else matched perfectly including my incredible 86 year old mother! My kidney transplant caregivers were my brother and sister-in-law. It was during the height of covid quarantine which was a very strange time. Are you a kidney transplant also? How was your experience during the first couple months?

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I am a liver transplant recipient. I was very sick last year with autoimmune liver disease and within the same year had a liver transplant as I was acutely ill. One of my sisters, who lives now local to me is my health care proxy and was my primary caregiver in that she drove me everywhere, including in a sudden and rushed way when I was called about a potential liver for me. She spent a lot of time at the hospital with me. I was hospitalized 14 times in 2021. My mother was very involved as I lived with her but given her age I expanded caregiving beyond her to include other family members, friends, my very amazing church, and my partner. While hospitalized post transplant (2 weeks total) I was supposed to go to inpatient rehab but there were no beds, so I returned to my mom's for 2 months and had visiting nurses and PT/OT. I needed less care — was able to do stairs etc – more quickly than I'd feared so as to be independent with at least fetching water and snacks!

My daughter was (is) in college and I didn't rely on her for care as I wanted her to immerse herself in college. Everything transpired during peaks of COVID and my early post transplant time was at the height of Omicron. It does make everything more complicated, to be sure.

One thing I have learned along the way, is how to ask for and accept help. And now that I'm stable, to pay this generosity of care forward. I am a social worker and though I don't discuss this with my patients/clients, it definitely informs my practice and what is needed when someone is suffering.

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@katebw 😊
Wow, we really do have a very similar life situation! It was your sister and my brother that came to our rescue when we really needed them. It sounds like you have a very supportive and loving family that helped you through a difficult time. My brother and sister-in-law were incredible when I got the call for my transplant at 2am in the morning!!
Your clients are very lucky to have someone like you as their social worker. I can tell that you have a huge heart.
It is a real pleasure to meet another "covid transplant buddy" with a similar life situation.
Thank you for posting this discussion!

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I am 72 and have lived alone my entire adult life. My parents and siblings have all passed away. When'Mayo said I needed 2 non-professional caregivers for the critical 6 weeks immediately after transplant or I wouldn't qualify for a new liver, I sent an email to cousins, friends and neighbors. Not only did a cousin and a neighbor step up for the 24/7 fur 6 weeks caregiving, 2 friends from Colorado and North Carolina offered to give my primary caregivers breaks in the 6 week schedule.
Before the transplant surgery I used professional caregivers post the exploratory laporotomy.
You may be surprised as I was how many of your friends and neighbors care and want to help.
Best wishes, Barbara

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@ajdo129 – that is wonderful that these special people are in your life and helped out! I have a small family and my husband and parents were able to alternate caregiving for me. But I also had a few close friends that came to Rochester for a long weekend to give them a spell too. And it provided a welcome visit for me too.
I thought it was interesting to find out who ‘is in your corner’ when you go through something like this. The people that you maybe don’t expect to help out or support you that do. And then there are some that you think will help out but don’t. It definitely made me more aware of my many single female friends, many without parents or children. They were there for me and I look forward to the time when I can repay their friendship, in some small way.
I hope you continue to progress and be successful in your journey.

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@jackiez

@ajdo129 – that is wonderful that these special people are in your life and helped out! I have a small family and my husband and parents were able to alternate caregiving for me. But I also had a few close friends that came to Rochester for a long weekend to give them a spell too. And it provided a welcome visit for me too.
I thought it was interesting to find out who ‘is in your corner’ when you go through something like this. The people that you maybe don’t expect to help out or support you that do. And then there are some that you think will help out but don’t. It definitely made me more aware of my many single female friends, many without parents or children. They were there for me and I look forward to the time when I can repay their friendship, in some small way.
I hope you continue to progress and be successful in your journey.

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@jackiez It is amazing who is there for you and who is not. You learn a lot about "friends" when you are going through something like this. It can be very eye-opening.
JK

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@katebw, this is a great discussion topic. I would like to modify the title to reflect its purpose and bring in more people. What do you think of these options?
– Who was your caregiver when you went through transplant?
– What was your caregiver situation while getting a transplant?
– Caregiver options and variations for people going through transplant

Do you have a preference or alternative?

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@colleenyoung yes, thank you for this. I like the title What was your caregiver situation while getting a transplant?

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My husband was my primary caregiver when I had my stem cell transplant for AML. That being said, he was working full-time and sometimes had to go on business trips or had important meetings while I had doctors appointments. My sister, my two sons and a friend stepped in to drive me 7 hours round trip for my doctors appointments. It literally took a village to get me through that time. I couldn’t have done it without them!

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I also had my husband as my primary caregiver. Luckily he was able to use the family sick paid leave for 12 weeks while I was recovering. Then due to timing my son was able to be with me for a couple of weeks during the summer after he left to accompany me to the doctors (he doesn't have a driver's permit yet though). I was lucky enough to have neighbors that offered to help out if needed (haven't needed anything yet though).

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