Any help for caring for husband w/Leukemia & Parkinson’s?

Hi @kerstij, As @jrwilli1 has said, Please do vent!! We have a whole BMT posse of patients and caregivers here ready to be your lifeline! I’ve never been one to ask for help either but having a BMT is a walk through totally unfamiliar territory and it can really help to have people to reach out to, vent to, or commiserate with who know exactly what you and your husband are facing. There is no shame in asking for help.

Which leads me to your husband. He sounds like a remarkable man whom you mentioned is strong and proud…wanting to fight and basically recover on his terms. He’s certainly been through the wringer with his cancer, the BMT and his back surgeries.
Recovering on his own terms may be the fly in the ointment right now. A BMT is a different animal and it doesn’t have any hard and set rules for recovery except to absolutely abide by the guidelines set for us by our BMT teams. That means adhering to the strict schedules of our many meds, drinking copious amounts of water for hydration and detoxing, trying to get in the recommended amounts of protein, which admittedly is a challenge, etc.
The other difficulty is when the patient has been healthy and active most of their lives and then faces a leukemic event that requires a bone marrow transplant, life as they know it changes abruptly!
The fight is to return to robust health and get stamina back. We think it’s like recovering from the flu or a cold. It isn’t!! This is a very traumatic event both mentally, physically and spiritually(emotionally). It takes months and months to recover. And I swear, some days we feel super human only to be forced back to feeling like an invalid for a few days. It’s a roller coaster! I’m 5+ years post and most of the time feel like my former energizer bunny self. But if I over do, boom…I’m back to 2 days or so of vegging out. I’ve learned it’s not a setback. It’s my body talking sense into me…letting me know I’m not super woman and to just slow down!

The sore mouth gvhd is something that crept up on me about 2 years post transplant. My go-to now is liquid Dexamethasone. When I have a flare I take 2.5 to 5 ml liquid in my mouth. Hold it there for up to 5 minutes then spit it out. I don’t consume the steroids. It’s used topically, though there will be a small amount that is absorbed by the oral tissue. If there are small lesions that develop on my tongue. They get spot treated with a Tacrolimus based ointment. That seems to control things.
It helps to avoid hot, spicy foods. Acid foods, such as condiments, pickles, salsa. When I’m having a flare-up, children’s flavored toothpaste works better than anything with mint.
For a short period of time I had the gravel feeling in my eyes. I ended up with Systane nighttime lubricant instead of the gel. But it has to be applied religiously every night right before sleep. Intermittently, it didn’t work well. If your husband’s issues persist there are also speciality Autologous Serum Eye Drops made from your husband blood serum which can be very helpful. I know of several people using these drops.
I hope his sight starts improving and his gvhd issues slow down. Initially, even though I had a perfect match, my new immune system was hyper active. My doctor put me back on Tacrolimus to prevent me from having to use steroids for months. I took tacro for 2.5 years. I now take no meds except for the occasional flare of oral gvhd if I make bad choices in foods! LOL. I confess…dark chocolate calls to me and I must listen. But then I pay for those thrills. 😂
Drop by those other sites I posted earlier. You’ll be able to meet more recent chimeras such as @katgob, @mary612, @dwolden and a host of veterans safely navigated the BMT mine field. 😀

Thank you Lori!
I do appreciate all this feedback from everyone! I really was feeling alone, giving family & close friends just the basics.
I think I mentioned that I wasn’t new to being a caregiver. Thing is I was thrown into it suddenly in ‘03. 😞
This part of sharing is hard…. I don’t how much I should share. Seems like there’s a lot of…heartbreaking stuff out there, I know my situation is minor compared to so many others… Do I share my story?

The beauty of Connect is the ability to feel like you’re sitting down with friends or family around a kitchen table or comfy couch. For me it harkens back to the kaffee clutches my mom, grammy and aunties used to have where they lamented, laughed, cried, planned or discussed whatever needed airing that day. It’s so helpful to have a tribe who understands what you’re going through! In Connect, you have the benefit of meeting with people who have walked the walk and have a keen understanding of what you’re going through.

Another special feature is that, unless someone gives their name, we’re completely anonymous which allows for some very poignant, honest discussions. I’m a very private person and it took me a while to open up to talk about myself or even ask for help. But this amazing family on Connect is so supportive and many of us have become like family…or even better…without the drama of family business! LOL
Anyway, yes, please share your story as much or as little as you’d like.
A good place for the transplant journey is 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/
If you want to stay in the Caregivers group where you are now, that’s ok too. We do have a lot of caregivers in the transplant conversations. You’re free to hop wherever your emotions lead you.

You’re right, there a lot of heartbreaking stories here. That’s where it’s so important for us to offer encouragement, support and hope. But there are also lot of victories and celebrations. You’re among friends.

This is kind of new, food not tasting right so…they’ve prescribed mouth rinses due to what they say is common for Chronic GVHD. Redness & sensitivity in the mouth, textures of food…Another thing they/we are trying to figure out is about his vision…he has basically no peripheral vision & his eyes feel like they have sand in them as he describes it. We have prescription eye drops, we have comfort drops & overnight gel drops but…again, he won’t let me apply them regularly. He’s a wonderful proud man that is determined to fight both illnesses his way but it’s definitely not working & it’s tearing me apart right now. Other symptoms of the GVHD is a rash that’s developing on his left forearm. It looks like a big purple birth mark that some people have. Fred Hutch (F/H) as I will refer to them from now on is keeping an eye on this too. He also had lower back surgery to remove a cyst that was causing him extreme pain removed just in September & they found a herniated disk under it that was blocked by the cyst in both CT & MRI. They repaired that. He also has what presents as spinal stenosis at the base of his neck which is causing him a lot of pain but the neurosurgeon is weary of doing another surgery right now due to the Prednisone he’s on.
Wow! I REALLY appreciate the outreach right now. Doing this is all new to me.
I’m taking things one day at a time right now.
I can answer more questions tomorrow but I need to get his evening meds together & try to get a few hours of sleep myself, if I can.

Wow! This is ending up to be a real blessing for me. Right now I need to drive my husband to Home Depot 🫤
He’s determined to do some projects that he shouldn’t be doing but…It’s riskier if he drives himself. I’ll be taking him to the ophthalmologist on Friday to see what they have to say about this stuff with his eyes. I may just sit in the car & continue with my story.
Thank you all 🙏

Oh my heart goes out to you. You are showing such courage and love under such intense circumstances.
My husband had an allogenic transplant this last August at Mayo Rochester to treat his high risk MDS. It has been quite a ride with blood infections, c diff and sluggish blood counts. My husband is 74 (“a young 74” he insists) and is, like your husband, used to being very strong active and independent.
As Lori says, allogenic BMT was a whole new thing and took every coping skill each of us has. I manage his meds and appointments. For awhile there were personal cares and just the constant vigilance.
I had a lot of support long distance from friends and family and my husband always does his best to cooperate although he hates to ask for help and would often gloss over symptoms. I was there to bring the realness.
We just got home a month ago. I still cry with joy nearly every day.
We continue to face challenges and the possibility of relapse as his chimerism is not coming on very strong.
Please please give yourself grace and get every bit of help you can. This is an epic journey and will take all you have, but each day is a new chapter. Blessings on you and your dear one.

I’ve said this before. This is a new way to reach out. I still don’t know how to just post something without going through my first contact which was Lori…. So for now, I’m going to start my journey for being a caregiver (aside of our kids)…..

Life went upside down in spring of 2003. Our kids were 11 & 13.
My only brother 6yrs younger than me died in a car accident. I had to step up & identify him & make sure he was viewable for our parents…. My husband & I handled all arrangements & got through it. Sad thing is that we were supposed to meet up with him because his exwife wanted to move out of state with their daughter…..they had joint custody & he wanted to know what he could do to stop her from leaving….Unfortunately we weren’t able to meet up that day because he had……….died on his way home from work…. Covering for another manager at Costco…..

That was the beginning of a very tough road.
I live in Snohomish Washington & right now I need to get our dinner together before I need to put together his evening/nighttime meds.
I REALLY want to get this off my chest…. I now know that there’s more of us out there dealing with A LOT of stuff… I will pick up where I left off tomorrow but right now I have my hands full…..

For all caregivers out there….stay STRONG!!!!!
It’s a tough journey but we’ll get through it 🙏

Hi @kerstij, I’m so glad that you’re feeling more comfortable about opening up and sharing your story. It can be liberating to get things off your chest! You’re doing great. ☺️

It’s so tragic about your brother and I’m sorry for your loss and for his little girl to lose her daddy. Did she then go out of state with her mom? Do you have any contact with your niece?
I know you have quite a challenge on your hands now with your husband, his GVHD issues and hesitancy to take his medications. I wish I had suggestions for you. Some patients cope with adversity after a traumatic medical conditions on their own and others can really benefit from some counseling. When I was in my 100 day stay for the BMT, I participated in a research project with a psychologist. The project was about how to spot people who may potentially suffer from PTSD following the transplant. It is very common for anyone going through transplantation, whether bone marrow or organ transplants, to have post traumatic stress. I’m wondering if it might help your husband to be able to discuss his anger and non-compliance with a counselor. Does the BMT team for your husband have a counselor on staff?