What is my obligation? (transplant caregiving)

I don't think you're a horrible person.

You're in a terrible situation, through no fault of your own. Your obligation is minimal. You're not married to the guy, after all.

You've been honest with us -- now be honest with him.

Your boyfriend sounds like the kind of guy who rides roughshod over the people around him, then expects those same people to cater to him. Is that fair?

As I say, "A drowning man will kill you to save himself." Don't let that happen to you!

Time for some tough love. Hang in there.

@minerva56 I, also, don’t think you’re horrible. You are being very honest. Like @scottrl said, now you need to be honest with him. It won’t be easy, it never will. My husband is my caregiver due to an autoimmune disease I have. I see how hard he works and when I talk with him about it, he reminds me of all the years I took care of him and our sons as we followed him around for his military career. You don’t have this same background so you really have no obligation.
I’m going to ask @danab if he could join this conversation. He had a heart transplant several years ago and he knows from experience!
Is there someone local you could talk to?

You have no obligation and are not a horrible person. It is up to his family to intervene if required.

The man can be placed in a facility, if he does not have the money, he can apply for Medicaid.

He will never be 100%, this will drag on forever.

Me, I would be honest and make plans to move forward with your life. Go to Agingcare.com, share your post there, you will get many more responses, the people there have years and years of experience with caregiving. You will get a lot of support.

Just one more comment:

If the roles were reversed, would he agree to be *your* caregiver?

...I didn't think so.

You are not horrible at all. I speak from experience….caretaker fatigue is debilitating and underestimated. Take it seriously. I have read for years how caregiving can ruin your health. I consider myself proof. I was the caregiver for my older cousin for six years, before her death. I promised her mother as she was on her deathbed. I eventually had to place her in Memory Care, but it was still very stressful and a lot of work. Now, I am caregiver for my parents (I also run my own business)….it’s very stressful and not sustainable. My health took a dive and I’ve had to refocus on myself to regain my good health.

Bless you for your good heart. It’s okay to just be realistic about the situation. Best wishes as you navigate through this.

Thank you for your kind and encouraging words.

@minerva56, for transplant recipients, having one or two dedicated caregivers are imperative, as you know. Being a caregiver is a commitment. I can see that you know this and you are wisely looking at the reality of your situation and relationship.

You might appreciate reading the experience other caregivers shared in this related discussion that @gingerw started a while back.

- Transplant Caregiver Advice: Got Tips to Share?
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/

If you cannot be his caregiver, but to share that decision sooner than later so that he can find someone else to fill that role. You need to do what is right for you.

Hi @minerva56 I received a heart transplant 6 years ago and my wife of only 11 years was my caregiver. First off yes at first its about having someone to drive to appointments, Be available to take back to the hospital for any tests that are required for mostly the first year. Now as for forever, at least in my case I have been self sufficient to drive, clean house, do all my own personal care, Shower, bathroom all on my own since about the 6 month mark. Now unlike a lifelong illness a heart transplant is more of a short term need of care and a support system mostly for rides. Certain procedures and tests require sedation and a driver is needed. My daughter is my secondary and I have not needed her help at all. Maybe my case is not the norm but as an example I go to the Gym 3-5 days a week. can walk 4-5 miles and do all my own house work, Cooking and laundry. I use an alarm to remember to take my meds and set-up my own med box each week. These are all things the transplant team will discuss with the patient and caregiver. For my wife the hardest part was all the driving as we live about 70 miles from Mayo Phoenix. But like the last 2 years I have drove myself as there was no testing that required a driver. Please know I also know of people who after transplant even went back to work and live very normal lives. So I would say your commitment will be intense for the first 6 months, Then will taper off and after a year will mostly be rides a few times a year for tests that require sedation. As a matter of fact my wife just recently had a fall and broke her hip. She had a partial hip replacement and is having a lot of pain. So now I'm full time caregiver as she cant drive since it was her driving leg and its to painful to drive. My yearly check-up was last week and the doctor asked about Her and I told her but if needed I have my daughter Nerby. So I hope that helps and I would also suggest you see if you can find a support group at the transplant center. Mayo I know once a week has them and its a time to get together with other patients and care givers to share stories and ideas. Its a great support system. Also please ask any question you like. Unlike your former husband who it sounds like had a terminal illness transplant can be quite different. I've met many who have had Heart transplants and have very few problems for as much as 25 years that I know of. I met one young man who was in his twenties who received his heart as a baby. Lived a very normal life had a job and looked like anyone else his age. So I'm here to help you thru your decision and maybe if you talk with Him, He can reach out to his kids. Hope that helps
Blessings

You are just being honest. In light of what you already endured with your late husband this just sounds like a whole lot.
You deserve to have a life too.

You are not going to get any of those comments from me. I have been caregiver of two people. In one case, it was not the patient that treated me like dirt but other people. In the other case, the patient was abusive — very. I understand why you would feel resentment and how there is absolutely no help but plenty of criticism and complaining. It does not seem like the cancer centers have anything to help with this. Maybe it is an area into which our society should take a serious look and make improvements. One time, they were surveying the second patient about whether he is being abused at home and he even replied, “No, I do all of that.” They did not even bat an eye. I think people just want caregivers to shut up and take it. I mean, people tell you to just walk away. Unfortunately, that is really hard for a person of conscience to do when someone will be alone and suffering.