How to be a good caregiver (bone marrow transplant BMT)?

@fifi11 welcome to Mayo Clinic Connect. I have had situations that have put me in contact with Transplant Centers over the past 20 years. Part of the process of transplantation (receiving &/or donating) should include a consultation with social work. These providers specialize in issues pertaining to psychology, finances, family & friends support systems, spiritual concerns, necessary resources for before & after transplant ….. etc Could you ask if your husband has a social worker assigned to his case? If you and your husband can see this provider with a list of your questions and concerns that would be a good place to start to get the help you need.

Hello @fifi11 I’d like to add my welcome to Connect along with @cehunt57.
Checking in with the transplant center’s social worker assigned to your husband can often help you find locations for housing and grants.
From my experience with a BMT, there were plenty of places near my transplant center in Rochester including hotels, Air Bnbs, condos, apartments, etc., which were reasonably priced that included the ability to take your pets.

I know it’s a challenge when you have pets and depending on the transplant team sometimes having pets during recovery from a BMT is restricted. Just in case, do you have family or friend who could take in your pets for two months?

As for joining a support group, you just did so, by being a member of our Connect forum. We have several members, including myself, who have had a bone marrow transplant and are more than happy to share our experiences to make your and your husband’s journey through this crazy time be a little less intimidating.

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
With members @edb1123 ( @waveg -Gretchen who also had MDS) and others who have had BMT/ SCT treatments for MDS, AML, and other blood cancers.

I know your husband will be receiving an allogenic transplant but the conversations in this discussion were about what to pack and have on hand for the months away from home.
~1 week pre Autogolous BMT 7/12
https://connect.mayoclinic.org/discussion/1-week-pre-autogolous-bmt-712/
Do you or your husband have any specific questions about the transplant? If you’re comfortable sharing, where will he be going through his treatment?

Wow, thank you for answering, it's the first time that I go on a blog and I get an answer. Yes, we have a social worker. My biggest problem I guess is that English is my second language (I'm French), so all the medical stuff is like a third language! I am not really aware of American laws when it comes to all this. We just moved to Oklahoma, my family is in France and my husband has none.
Regarding Bubba, I've looked at boarding, but it's more expensive than if we take him with us. I think I'm just overwhelmed, and I make it more complicated than it is! I will read all the websites that you sent me today, call our social worker (talking for me is easier than emailing, I can ask questions right away). I just wanted to thank you both and tell you how much I appreciate responding so fast. TTYL

@fifififi It must be quite a culture shock for you to come to the US from France and move to Oklahoma…smack dab in the heart of the country. Even more difficult if there is no family around for support. Well, you just gained a new family in Connect. ☺️

Believe me, even without a language barrier, having a bone marrow transplant can seem overwhelming with all that’s required of both you and Christopher. The caregiver has a difficult job…your husband is ‘just along for the ride’. Or at least that’s how I felt as a patient. My job was to focus on my health and following the direction of my transplant team. My poor husband was doing the worrying and the work to pick up my slack. LOL. And believe me there was a lot of slack. 😅
But that hard work all pays off with a healthy second chance with life. You and your husband will get through this too but the logistics aren’t easy with all the travel and such.

From experience the whole transplant scenario can feel so overwhelming. I think the biggest thing was the relocation and logistics of making that happen. Our social worker was very instrumental in pointing us in the right direction. The clinic where your husband will be obviously have other people in the same situation who needed lodging with pets. That would be the easiest for you because it’s a strain on you and your pets not to be together.

You’re so right, all the medical terminology is like a 3rd language even if you’re from the US. 😅 But I learned a lot from my experience so if there’s anything you’re not familiar with just ask me. There are a number of us who have had bone marrow transplants for various blood cancers so you’re not alone here. We all have your back.

Is his transplant in a larger city?

All of this started November 9th, 2019. He didn't feel good and finally agreed to go to the ER (men...). Within 3 months, he was 17 times to the ER and 11 times hospitalized. He was diagnosed with HUD, sarcoidosis, liver cancer, but each time it was a false positive. He was 4 years on steroids, which made him become diabetic. During the pandemic, it was him and Bubba at home (that's why I can't separate them...), while I was working as a caregiver. When we arrived in Tulsa OK, he stopped all medication and started feeling better, until he was no more. His platelets went down to 13, then to 7, that's when they hospitalized him again and diagnosed him with myelodysplastic syndrome (it took me about a month to get this word in my brain!). Ever since, he has chemo 6 days a month, he still works (he is a salesman) and the rest of the time, he sleeps. When his appointments for work are far, I drive him to make it easier on him.
Our social worker is nice, but it seems that I should know things she is talking about that I don't know. I am retired (I am 66) and Christopher is 10 years younger. He was supposed to be my retirement plan (that's a joke between us) and look at me now...
It breaks my heart to see him so weak and sick, I feel helpless, I spend my days sending emails to find grants, we moved to a cheaper apartment without stairs, and paid rent for a year.
The rule at the hospital is that, if we live more than 100 miles away, we must stay in Oklahoma City 2 months after the transplant. We live 106 miles away... They make life so much more complicated for 6 miles!!!
I don't even know if anything I say makes sense, I just spit it out as it comes...

You said everything perfectly and I’m sitting here feeling your anxiety. You and Christopher have been through so much together and he’s surely had more than his share of medical excitement. You’re a wonderfully supportive and loving life partner for him. ☺️
Oh my goodness…that 6 miles is indeed a headache. But I do understand the ground rules set by the transplant teams. Mayo, where I had my transplant, required us to live no more than 30 miles from the clinic. It became apparent why once the transplant journey got underway. There are daily trips to the clinic for blood work, infusions or followup appointments. Sometimes there was more than one trip back and forth daily. We were fortunate to stay 2 blocks away and the clinic was accessible by an underground tunnel system. So that made it super easy even in the middle of the night, if I wasn’t well, for my husband to wheelchair me back to the clinic. It’s important to stay nearby for those daily trips and any emergencies.
After the critical period of the first two months post transplant have passed, those daily trips are tapered.

Don’t hesitate to ask that social worker to clarify things for you if you’re not understanding. That’s their job to help you make sense of all of this and to have the experience go smoothly for both of you. They may have a listing of possible lodging places for you or suggestions.
You can do this!! ☺️

I have one more question (well, that's not true... but this is the one that's bugging me). How did you survive? From what I understand, being a caregiver is a full-time job. Actually, we are living on Christopher's income. Our social worker always asks what our income is, but the one we have now won't be the one that we will have in 2 or 3 months.

Hi @fifi11 At the time of my leukemia and subsequent bone marrow transplant my husband and I were already retired. My insurance paid for everything but our lodging. They would have paid $10,000 towards that if I’d stayed in my home state. But we insisted on Mayo-Rochester for the transplant so we had to cover the cost of lodging.
Does your husband have insurance for the procedure? Have you looked into whether they pay a stipend for lodging or not?
I’m just really not familiar with what programs are available in OK to help financially. That’s another question for the social worker to answer for you. When she asks about your income is she able to give you ideas for what to do going forward? I know your husband won’t be able to work for quite a few months as his energy level and immuno compromised position will keep him limited.

You mentioned your writing for grant money. Have you gotten positive replies?

I know that the transplant and hospitalization is covered. There will be a home that will be free, but doesn't take dogs, the cat is taken care of but not the dog so far. I had a few answers from the grants, we received so far $600 that I put aside for now. There are some that want a transplant date that I don't have yet.
I called the social worker today, but it seems like we don't speak the same language... I don't know if I'm plain dumb, but she talked about pre grant and post grant, but I still don't know what it is.
Christopher thinks that he will have the transplant and get back to work right away... I keep telling him that it won't happen, but try to explain to a man that he is wrong!
I guess I just have to take one day at a time and leave the rest to God!
Thank you for all your concern, it really helps, I feel less lonely!
Y'all have a great day and thank you again.

Oh gosh, I sure hope you can find a friend or someone who could take your sweet dog for a couple of months. Our old puppy had passed before I got ill, so doggy care wasn’t an issue. That would have broken my heart to not have him with us.

As for your husband thinking he’ll return to work right away…I let out a little snicker…cuz ‘that ain’t happening’. I know his MDS is already draining him of energy. I can guarantee the first 2 months of transplant he’s not going to be running any marathons! But that’s something he will learn and figure out on his own. Nothing you can say will convince him of that except the experience.

As a caregiver you’re going to be making sure he takes his meds on time, gets back to the clinic for all appointments, finding foods that he’ll feel like eating, etc. He’ll be very weak for the first couple of weeks, possibly nauseated from the chemo (preconditioning for transplant).
Will your husband be an out-patient for transplant? Or does he have to spend a few weeks in the clinic immediately after transplant?
Any news on a donor yet?