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

Caregivers | Last Active: 2 hours ago | Replies (22)
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@kerstij

Hi Lori,
His transplant was August last year. 100% match from his sister. Things were going good until the “chronic GVHD” started to appear this year. He’s being treated at Fred Hutch Seattle & they’ve been great. They’re aware of what is going on as of Monday.
Up until a few months ago, dealing with the Myeloid Leukemia & his Parkinson’s was going well. Then the GVHD started presenting itself & the Parkinson’s (I’m thinking) was also reacting/progressing with changes of meds.
It’s really messed with his head, he’s always been very active & now he’s fighting the fact that he needs to take a couple steps back but he won’t. Yesterday he fell on the staircase hitting his head on the wall, broke the skin a little but never lost consciousness. He’s been dizzy the last few weeks but…..this is…maybe because he WON’T drink the amount of water that they highly recommended due to his liver status.
He’s extremely irritable, won’t eat, can’t sleep & is blaming me for reminding him that he needs to take his meds! I got up at 2am this morning & took the nighttime meds away from where I always put them & he found them at 3am (or so) & took them. I was up at 4:30am & knew that I was going to have to adjust all of the meds the rest of the day 😣
I’m doing the best I can but it doesn’t seem to be good enough…just feeling lost. He’s 67 & I’m 63. Very hard to pull off all nighters lately.

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Replies to "Hi Lori, His transplant was August last year. 100% match from his sister. Things were going..."
Lori, Volunteer Mentor | @loribmt | Dec 29, 2024

This is not an easy situation for you or your husband. You’re being very hard on yourself! Think about the stress and uncertainty that have been your constant companions for the past couple of years. It sounds like your husband had AML and then the transplant. I went through the same thing and watched my husband, my caregiver, age right before my eyes during that odyssey!

Watching someone you love going through all the treatments and then the process of transplantation and recovery is a challenge that’s difficult to describe unless you’re going through it. You suffer right along with them trying to offer comfort, finding foods they can eat, keeping track of meds and appointments. It’s exhausting.

This second chance at life for your husband doesn’t come without a hefty price tag of the abrupt upheaval of life as you’ve known it for the 40 years you’ve been married. Nothing can prepare a couple for this. So please, give yourself some grace. You are doing the very best you can!

I am sorry to hear about the gvhd making its presence known. The meds used to control that may be having an impact on the Parkinsons. It’s always a balancing act with meds. I’m glad his BMT working with him on this. But it is concerning with the dizziness and instability.
Being irritable is troubling too, especially since you’re taking the brunt of the grumbles.
There’s another member whose husband had his transplant almost 2 years ago. Her husband also has Parkinson’s which makes some days more difficult and concerning than others. Being able to commiserate with someone facing the same challenge might help you not feel so lost. I’d like to introduce you to @jrwilli1.

Since you’re new to the forum, I’d also like to give you a couple of links to discussions with other members who have had BMTs and/caregivers. Don’t hesitate to jump into the conversations.

~My bone marrow trnasplant story. Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
~~~
Chronic GVHD. Let’s talk about it!
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
There’s also a great website for all things transplant. The link is in this discussion https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

If you don’t mind sharing, what are your husband’s gvhd symptoms?

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