Bone Marrow Transplant Caregiver: Looking for emotional support

Welcome to the forum. You will find many people here who have had similar experiences and who can not only listen but offer helpful advice. Please, ask you questions and voice your concerns.

Michele— I’m really sorry for what you and your husband are going through. Although I’m not familiar with bone marrow transplants, my hubby does have a terminal illness. I know the uncertainty is hard. I feel for you and hope you find connection and support for your particular situation.
Take care.

@rsp21224 Michelle, I think the best person to help you and answer your questions @loribmt . She had a bone marrow transplant several years ago and is back to being quite the energetic sprite. @becsbuddy

@rsp21224. Hi Michelle! Having a BMT is quite a roller coaster ride of emotions, for both the patient AND the caregiver. As @becsbuddy mentioned in her reply, I had a BMT for acute myeloid leukemia 7 years ago at Mayo Rochester. I just “cell”ebrated last week that anniversary last week.

My husband was my caregiver and wow, he was an absolute pillar of support for me. But I watched him age before my eyes with what he saw me going through and then all the responsibility levied on him for all those months. Having been married 45 years at the time, you can imagine there was a division of labor between the two of us. So the burden of my forced abandonment of my duties fell on his shoulders. Believe me, all of us here in Connect who have gone through this amazing medical miracle of gaining a 2nd chance at life know that it did not come without a steep mental toll for us and for our families. So you’ve come to the right place for support! We’ll do our best to help you and your husband weather the challenges! Don’t hesitate to ask us anything!

I’d like to introduce you to just a few of what I like to call my BMT Posse! When I became the mentor in this group, there were just a few of us but we’ve grown in numbers so I’d like you to meet @dwolden, @mary612 @g4c @alive @anitasharma…Each of us have a different story and perspective.

I’d also like you to join us over here: My Bone marrow Transplant story. Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
And here: Snapshots of hope: Life on the other side of transplant! Photos https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

What underlying disease had your husband requiring a BMT?

Hi Michele. My husband had an allogenic stem cell transplant in August of 2024. He’s doing well now but we did go through a lot.
I’d be glad to talk to you or message.
Lori has been a great mentor to me.

@rsp21224 Hi Michelle. Just following up with you this morning to see how your husband is doing and…how YOU are fairing? I hope you’ve been able to see some of the lovely replies here that fellow BMT members have given.

We can truly relate to the overwhelming feelings you’re having right now as your husband is undergoing his bone marrow transplant. It is a roller coaster adventure like no other, that’s for sure.

Please know that you are not alone! I’m here for you anytime you have a question or concerns. Plus, your husband is at Mayo-Jacksonville. You’ll both be well taken care of by his amazing BMT team…you’re both in excellent hands.

Is he undergoing the preconditioning right now or has he had the infusion of stem cells yet? What is your major concern right now?

@dwolden thanks I see that she has replied here as well

@sandpile60 thank you much appreciated and praying for you

@loribmt good morning thank you I was having trouble logging in I am ok not great. I read thru your post! Yes role reversal has been tough! My support system is in place my daughter and an outside therapist that I have been talking to two times a week! The journey getting here was so tough and I just feel very isolated at times! Sometimes tunnel vision keeps me from coping better!

@rsp21224 Hi Michelle, there can also be some advantages to tunnel vision and not having to ‘take in the entire picture’ at one time. It can be overwhelming to try and cope with the broad scope of things.
I’m a notorious for compartmentalizing. That is my coping mechanism. I only allow a little bit to come out at a time when I’m ready for it. If that makes sense. But certainly there needs to be brief glimpses of the big picture and a positive projection for the future.

I hope you’ll find you don’t have to feel isolated. Like I mentioned earlier, you are not in this journey alone as a caregiver. And we’re also here for your husband! Though I know from my own experience, as a patient I was pretty much just along for the ride. I trusted my team and complied with all their wishes. That kept me grounded. However, as caregiver, you are carrying the full load. If I may, one piece of advice my transplant doctor said to me, and my husband, “Please, leave any worries up to me. That’s why I am here so that you can focus on rest and recovery.” That’s all I needed to know. It gave my husband peace of mind as well.
Don’t hesitate to talk to the team members. That’s what they are there for. They want your husband and you to be as comfortable as possible throughout the entire mission. I’m 7 years post transplant and I can still contact my team for support and have annual personal followups at Mayo. They want a successful outcome and happy healthy life ahead for your husband as much as you do! ☺️

So, again, please know you’re not alone. Let me know if I can help you with anything, ok?