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Interested in how other caregivers survive

Caregivers | Last Active: Aug 4 11:08am | Replies (123)

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@brishawn24

Hi everyone, I’m so grateful to have found this space for caregiver support. My 31 yr old husband is currently in the ICU (for about 2 months now) awaiting a liver transplant. He was just approved by the hospital MRB team on Friday. I hope to get more information Monday as it’s been the weekend and I have many questions. I have been very stressed out and overwhelmed, as there have been many complications so it has been quite the rollercoaster. I know I’ve been neglecting myself, I am finding it difficult to eat, sleep, have gone on FMLA for work and attempted to work last week but it was too much so I decided to take next week off. All of our family is located all over the country, and we are young and do not have children, and he had also isolated himself the past few months so there is a lack of social support which has not helped me with feeling a heavy burden. The what ifs are frightening, the medical team/social worker/hospital in general has been lacking communication and when I do get information it seems conflicting or like I’m not getting a straight answer much of the time. And he is at the “top transplant center in the country” according to their outcomes, but still grateful for everything they have done so far to care for my husband. Also, how do you find the time? It’s like I just got a new full time job dealing with all the paperwork/medical decisions/coordinating caregiver plans/trying to keep what’s left of his life together while still maintaining a semblance of my own life. And I’m angry because I was lied to by him and this was completely preventable (Tylenol, supplements, and alcohol all contributed to end stage liver disease/liver failure). I don’t know how to do this, or if I am even capable! We just married 2.5 years ago and this was the prime our lives. Now it’s permanently damaged/changed. Thanks for reading, any feedback is appreciated and I’ll continue to read here to keep learning.

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Replies to "Hi everyone, I’m so grateful to have found this space for caregiver support. My 31 yr..."

I'm glad you found this group, too. I'm more than twice your age, so I apologize if my advice seems out of touch. But, I've lived, loved, lost, and been lied to, too. I know it does get better, eventually. You'll learn here that you are NOT alone. It's natural to feel overwhelmed when diving into such unknown territory. It's hard, it's frightening, it's unfair. I salute you for everything you're doing for your husband. You'll find yourself stronger when you come out on the other side of this. Keep hope alive. Try to know you're working toward happier days ahead. Meanwhile, please keep reading and posting when you have a chance. Being a part of this community will help.

@brishawn24 ,

It sounds like you really have been through a lot. I’m so sorry. What a shock and enormous thing to deal with. I’m not familiar with the transplant process, but I know those around this site are. Is there a social worker you can speak with?

I think sometimes friends are silent during a time of crisis, because they don’t know what to say. Maybe, if they know you need to just talk, they would welcome it. Last year , when I had a medical crisis that I didn’t feel comfortable talking to family or friends about, I got a therapist and that was a very good decision for me. It turned out, I continued with that therapist. I found him by looking at my health insurance’s in network providers.

How did your husband discover the liver damage? It sounds so sudden.

I hope things improve and that your husband’s procedure goes well. I’ll look forward to seeing your updates here.