What is my obligation? (transplant caregiving)

Hi again @minerva56 I wanted to add as I just reread your concerns and wanted to add. As for dealing with measuring pee my wife never had to do that. Also when I say support its more of like what i would consider what any loving couple would do for each other. I was always abel to go to the bathroom myself and eat, i was mobile and no lifting was required. Like I mentioned it was mostly driving as I was not allowed to drive until off the pain killers which was 6 weeks. and mostly what she did was just to be there and be supportive. The only other requirement was I could not lift over 10 pounds for a few weeks until the incision healed. So when you mentioned measuring pee i got the impression with you past experience it required measuring your husband pee to probably see if he was retaining too much. I was never at that level of care. Based on what I needed my caregiver for was mostly to assist in things like preparing food at first, Lifting things like suitcases and anything over 10 pounds and driving. Now my wife was a former nurse and wanted to help more so while I was in the hospital she would sleep in my room and help the nurses out. But completely voluntary. I'm here now trying to remember anything close to what some of the others have mentioned. The one area that I can think of is I did get a bit frustrated when I was first out of the hospital and still in a lot of pain. I would have a lot of sleeping problems which usually woke Her up also. I also had to learn to be diligent in taking my meds and at first the level of the meds was pretty high. So this also caused a loss of appetite and I was a bit more frustrated with that as I was hungry, but food tasted lousy. All of this was very short lived like weeks not months or years. I see the caregiver as more of a coach that helped you manage my life and to give moral support to hang in there.

I want to add that the benefits for her and myself became a reality after. No one who is on the transplant list just woke up one day needing a Heart transplant. My life prior to transplant was worse in some ways than the time spent after transplant. I mentioned I met my wife 7 years (2011) before this transplant (2018), and we dated for 2 years prior to getting married (2013). During that time I had a condition called VT which is Ventricular Tachycardia. I had a pacemaker with difibulator (since 2008) and my heart would have arrythmias where my heart would go up to as high as 220 BPM. Actually during our dating period I had multiple episodes where the difibulator had to shock me back into rhythm. So now no more midnight runs to the hospital where the ambulance is taking me because I just had another episode. Im actually surprised when i asked my wife to marry me she said yes. I went thru 2 ablations prior to our marriage and 6 more before the transplant. So I'm saying this because there must be a reason your boyfriend now needs a heart. Im hoping you will think about how much better it might be after his transplant. I hope my story may help you to see that at least in my case I was pretty sick prior to transplant and now I have a much better life just with a different set of rules. I welcome questions and I would love to know why your boyfriend needs this transplant.

Knowing what you went thru with your spouse gives you plenty of forewarning and it’s good you’re speaking up now. You’re entitled not to be whom you don’t wish to be and unfortunately I gather you didn’t or haven’t broached this subject in-depth previously and feel stuck. You still need to speak your mind and get it off your chest. At least hand off what you know to the next care giver if possible and good luck.

You are not horrible. You are truthful. It's your life. Live it the way you want. You only get one shot at it.

Thanks for that post. My partner/caregiver is growing weary, but doesn't acknowledge this to me. I am on UNOS waiting list for liver transplant at mayo jacksonville. We are both hoping this will give us back a semblance of normalcy in our lives. Every day I'm both grateful and guilt ridden. We have met and talked to transplant patients and caregivers. Very encouraging with straightforward information from both perspectives. Ty for your post.

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.

I’m so sorry for your loss, @minerva56. I know you wrestled with this very big decision of caregiving that was placed before you and it wasn’t easy. Throughout your boyfriend’s situation you were very compassionate and thoughtful about his feelings and handled this all perfectly right up to the end.
No one knows when their life will be over but to pass on one’s own terms is the best anyone can hope for. It sounds like his passing was peaceful and filled with love of family, shared stories and memories for all of you to hold onto. You can be at peace too, knowing he felt supported to the end. I hope you can heal now too. Sending a gentle hug.

@minerva56 how have you been? What did you decide to do about caring for your friend? I think you received wonderful advice. Whether you decide to care for him or not, please remember that you are a good person who wanted to do the best for your partner AND yourself. I admire your faith and courage.

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.

@minerva56, Please accept my condolences. ❤

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.