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What is my obligation? (transplant caregiving)

Posted by minerva56 @minerva56, Feb 7 9:27am

My boyfriend is waiting for a heart transplant. We have been together for 2 1/2 years. He lives in my house.
I was the caregiver for my late husband for 7 years (prostate cancer). It was not pleasant. He was mean, demanding, and degrading. He was angry that I was not happy. I got no support from MD Anderson/Banner. When I called the social worker for help, they told me they could not help me because I was not a patient.
Now, here I am again. My boyfriend has 2 daughters neither of them volunteered to be the primary care giver. The social worked said I am not oblicated. If he does not have 2 caregivers, he will not be approved for a transplant. So I volunteered. I don't want to do this. I think he would get better care in a rehab center. If I do take care of him, I will resent that he has taken away so much of my life. As soon as he recovers, I will want to leave. I don't want to measure his pee, tell him how and when to take medications, he will not listen. He promises he will, but I don't have faith. He is the kind of guy who always knows more than anyone else.
I am sure I will get many comments about how horrible I am. I think I am horrible too.

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babby | @babby | Apr 26 8:55am

I have been a caregiver to my spouse who is a liver transplant since 2009 when he got sick. He got transplant in 2010. I also took my mom to live with us in 2012 to 2014 until she passed from Alzheimer’s. My spouse has had many problems that are too numerous to go into. He has lung damage and has COPD. His lung damage happened during transplant. We are so grateful to the donor and for the surgeons who saved his life. He has struggled with survivor’s guilt and has massive depression. I’m not going to sugar coat how mentally and physically exhausting it is for me, but I made the choice to support him. You carry their diseases. You must take time for yourself outside of the home. Go shopping, movie, dinner, lunch, garden, hike, spa day, and eat healthy. It can become isolating so you need groups like this one to vent and hear other caregiver experiences. This is not for everyone. Do you what is best for you. It’s a lifelong commitment. ❤️✌️

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 26 9:49pm
In reply to @freebird36 "My spouse has been vb and Psy abusive most our mrg.. ea time I was ready..." + (show)
@freebird36

My spouse has been vb and Psy abusive most our mrg.. ea time I was ready to leave I’d lose my job or he promised to be better..
Now he has gr 4 gbm. He’s had the surgery and treatments and still on adjuvant chemo. He’s doing very well physically and mentally except now he’s starting to get back to the verbal criticizing and complaining of me. When he acts this way I count the months til I can leave, but, if he were to take a turn for the worse, of course I wouldn’t abandon someone in that situation… so far his last 3 mris have been clear..he gets another mri end of may… hes on Temodar til August and gets an mri ev 2 mos and lab once a mo. ( dr said his last lab was normal.
So far he’s living a good quality of life, no pain, good appetite, and he can do more physical activity now than when he was on radiation.
He keeps improving …like others, we wait ev two mos with fingers crossed…hoping next mri will still be clear.

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@freebird36 life with your husband sounds very difficult and depressing. Is he able to care himself well enough that you could go away for a few days ? I think you’ve earned it! Does he go to any group settings during the day? Is he able to do something like that? And how about male friends who would play cards or watch sports occasionally so you could get out of the house?
Can you think of any organizations in your community that could help you brain storm some options?

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Mentor
Dana, Volunteer Mentor | @danab | Apr 27 4:55pm
In reply to @minerva56 "I would like to follow up....My boyfriend died. I was adivsed to tell him that I..." + (show)
@minerva56

I would like to follow up....My boyfriend died.
I was adivsed to tell him that I did not think I could be his caregiver. I knew that if I became his caregiver, our relationship would be doomed. His family would be on my back constantly, overseeing my activty and telling him what he should and should not do. He would be calling his daughter (who is a Dr) second guessing my every effort. He would resent me, I would resent him.
If I was not his caregiver, our relationship was doomed. It would be difficult to forgive someone who is not willing or able to care for you.
I asked the Mayo transplant social worker, what happens to people who have no one to care for them? I was told, they go to a rehab facility. However, that was not offered as an option to us.
I did not tell him that I could not care for him. There was no reason to take away any hope he may have had. Eventually, his heart was not strong enough to support him, even with the valiant efforts of the Mayo transplant, heart failure and nursing team. His care was exceptional and he touched many hearts while in the ICU. He died on his terms. Agreeing to stop efforts that were prolonging his death. not saving his life. As the drugs, ports, IV's and various equipment were slowly removed and morphine was administered, we sat together. Telling stories and getting advice from him. How blessed we all were for having him in our lives.
I am glad I did not tell him.

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@minerva56 Thanks for Sharing and my thoughts go out to you now. I hope you are also able to heal and be able to take the good feelings you shared about the end and be happy with how things worked out. Thanks for allowing us to share in your story.

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rarecandy02 | @rarecandy02 | May 26 12:26am
In reply to @minerva56 "Thank you for your kind comments. My boyfriend died on February 13th. The day before Valentines..." + (show)
@minerva56

Thank you for your kind comments. My boyfriend died on February 13th. The day before Valentines day. He sent me roses from his bed in ICU. I am blessed to have had 3 years with him.
I hope you are well and taking care of yourself.

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I am so sorry for the loss of your boyfriend. I am glad that things were peaceful for him at the end and that you were able to express your appreciation to each other.

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