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Meet fellow Caregivers - Introduce yourself
Caregivers | Last Active: Nov 12, 2023 | Replies (707)Comment receiving replies
Hi Colleen, Sorry for the delayed reply and thank you for checking in. The last two weeks have been chaotic. When at the hospital to meet the transplant team to begin the interviews, my husband was in such bad shape, they immediately admitted him and began the physical evals. Within 2 days, the ICU roller coaster began. It was touch n go for several days. The team has worked tirelessly to get him stable, so they can complete the testing and formally submit his case. They all believe he will be approved despite the fact the addiction has not and is not being addressed. We live 125 miles away from the hospital he is in - which has made my visits more infrequent. He is adamant to come home; I am equally as adamant I can't care for him in this condition. It's a battle and he is angry and frustrated with me, thinking I am being unreasonable and selfish. I reached out to the transplant team today to ask them to slow the roll on the discharge. They were under the impression there is fulltime care here at home, which there is not. It's just me and with work, all the more challenging. The man is still on a feeding tube and catheter so I am puzzled as to why there is such urgency to release him. ? Pretty sure it's coming from my husband. Now I am wallowing in guilt - questioning if I did the right thing sending the brutally honest email - yet knowing I did. Fearing they will not approve him now; fearing they will. His pre-transplant care plan has now become a glaring issue for the transplant panel. I've been clear I cannot be the primary or secondary post-caregiver. Now I feel trapped that I have to be the pre-care provider. I am not heartless and want to do what is right ... but I am struggling more then ever. So very, very tired.
Replies to "Hi Colleen, Sorry for the delayed reply and thank you for checking in. The last two..."
@jugar Please do not feel guilty for being honest with yourself and the transplant team! They may have been told by your husband that everything is in place, so that they would release him. It's good that you have made it clear the reality of the situation. "Stick to your guns" as they say, knowing you have to do what is best for both you and your husband.
Ginger
@jugar, I strongly recommend that you ask to meet with a transplant social worker. You need someone who understands and can guide you and help you navigate the practical and emotional aspects of your husband's medical needs, the reality of caregiving and the potential miscommunications between all parties involved. This is not something you need to solve on your own. It's a team effort and the transplant social workers are there for YOU as well as the patient.
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I am so sorry to hear of the crisis you faced, but sometimes it can be a blessing in disguise. It gives the transplant panel more time to see and assess the whole picture. It gives you time to evaluate and clearly articulate what you can and cannot handle.
But I am encouraged to see that you are standing firm in your assertion that you cannot be his post-caregiver. Every person in this complex equation must be forthright in saying what they can and cannot do so that the right decisions and arrangements can be made. Please, do not let guilt or his anger force you into a situation that you cannot handle safely - for you or for him. That is the definition of bullying, which you don't have to tolerate.
Also, there are facilities, a step down from hospital, and a step up from a skilled nursing home, that are equipped to care for people with feeding tubes, catheters, etc. Perhaps the hospital's social services can locate one where your husband can be cared for in his current condition.
Do you personally have a counselor or pastor to whom you can comfortably speak? It can be helpful in processing your feelings, so you won't feel so overwhelmed. You definitely are not heartless, but "what is right" must be both of you - not just him - and both pre- and post- plans must take that into consideration.
Please feel free to continue to share your concerns with us, we're here to listen and try to help you sort out your feelings.
Sue