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

Posted by kerstij @kerstij, Dec 29, 2024

How do I help him when he won’t take his meds on schedule, won’t drink the amount of liquid doctors want him to, due to all the meds he needs to take for both illnesses. He’s starting to show signs of GVHD (graft versus host disease)
He’s showing signs of dehydration, no appetite, fell twice this month.
It’s SO SO hard to watch him deteriorate like this. We’ve been married 40 yrs 😔

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Mentor
Lori, Volunteer Mentor | @loribmt | 11 hours ago
In reply to @kerstij "Continuation of my journey: So…got through a second funeral in two months…a lot of adjustment to..." + (show)
@kerstij

Continuation of my journey:
So…got through a second funeral in two months…a lot of adjustment to make sure that my dad could take care of himself. He never had, it was the Air Force first & then my mom that provided for him. We got through the first Christmas & then my husband’s dad had a sudden fatal stroke two days into 2004… At this point we could see that we had to make some changes, 3 funerals in 9 months is quite extreme. We were in the process of remodeling our kitchen & needed to finish it. We got that done & then decided that it would be best if we found another house to be able to bring my dad in to live with us. So… we decided to pack up & move into my parents home & lived out of suitcases while I still worked.
After my mom passed, my brothers ex-wife decided not to move out of state because she realized that it would be better to stay close to her family & included us a little bit.
Anyway, our kids were 10 & 13 yrs old so moving them to different schools wasn’t going to be an option because they had been through enough & we wanted them to have some consistency.
So…. I filed variances with the schools guaranteeing them that I would get the kids there & pick them up. I was still working but my boss worked with me, I would drop the kids off at school, work & then pick them up from school.
In between all of that I did the house hunting. It took 8 months to find the right house. Now it’s May 2005.
I need to stop here & get drops in hubby’s eyes before going on.
Thank you for letting me share this.

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Looking back on the events that have shaped your life and that of your husband, it shows the level of resilience and tenacity you posses to keep on pushing through during even the most trying of times! I bet opening up, letting your story pour out in ‘print’ feels really cathartic.

You are a natural caregiver! However I can sense this latest chapter with your husband’s cancer and bone marrow transplant is taking its toll. He may feel this isn’t any big deal but then again, he’s not being compliant with the protocol set up by his BMT team. He’s not taking meds on time and that’s creating some serious gvhd issues that may have been avoided. This, in turn, is creating turmoil for you as you try to keep him healthy. He may not want to visit with a counselor but it would be quite helpful at some point to let his team know that his isn’t taking his meds on time. You shouldn’t have to be making these adjustments for him. There are reasons for the protocol and consistency in medications, especially the anti-rejection meds is crucial to his health and ultimately yours (mentally and physically).
You’re doing an amazing job. I know being a caregiver for a BMT patient isn’t easy and your husband is making this extra hard on you. You’re a trooper, m’dear!

So keep on typing here, I think this is helpful for you!

REPLY
1 reply
kerstij | @kerstij | 2 hours ago
In reply to @loribmt "Looking back on the events that have shaped your life and that of your husband, it..." + (show)
@loribmt

Looking back on the events that have shaped your life and that of your husband, it shows the level of resilience and tenacity you posses to keep on pushing through during even the most trying of times! I bet opening up, letting your story pour out in ‘print’ feels really cathartic.

You are a natural caregiver! However I can sense this latest chapter with your husband’s cancer and bone marrow transplant is taking its toll. He may feel this isn’t any big deal but then again, he’s not being compliant with the protocol set up by his BMT team. He’s not taking meds on time and that’s creating some serious gvhd issues that may have been avoided. This, in turn, is creating turmoil for you as you try to keep him healthy. He may not want to visit with a counselor but it would be quite helpful at some point to let his team know that his isn’t taking his meds on time. You shouldn’t have to be making these adjustments for him. There are reasons for the protocol and consistency in medications, especially the anti-rejection meds is crucial to his health and ultimately yours (mentally and physically).
You’re doing an amazing job. I know being a caregiver for a BMT patient isn’t easy and your husband is making this extra hard on you. You’re a trooper, m’dear!

So keep on typing here, I think this is helpful for you!

Jump to this post

Thank you! I have been talking to his team, both initial BMT & also the LTFU (long term follow up) team. The thing that frustrates me is that they….talk on the side of caution, I understand that they need the patient to have a positive attitude…what makes it hard for us as caregivers to have a sudden bomb dropped on us….I’ve learned this through the situation with my husband…I feel that there will be another bomb dropped suddenly (in my gut) 😣
Continuing my journey:
So…we moved into our new home, two young teenagers, my dad & us. I still had to take the kids to school, go to work & pick them up…Doable! My dad was still able to drive, he met a “lady friend “ so life was ok. Still taught the kids to drive, they went to college etc…
Fast forward to 2012.
Son got married & the day after their wedding my dad was at his lady friends house, helping her in the yard & he collapsed. She called me, told me what happened & I drove out to them (25min?) she also called 911 & paramedics were there when I got there & they highly recommended he be taken to the ER….
Bomb drop, my dad needed a quadruple bypass!

This does help me, writing this all out 🙏
Right now I need to attend to our son’s dog that’s 14 yrs old, partially blind, mostly deaf & has an inoperable tumor in her abdomen while he’s out of town. His wife is a school teacher (2nd grade) & they have two other full size Aussie’s. I can’t take care of all of them & my husband…wish I could. So the 14 yr old mini Aussie that basically grew up here is in my care for a week. She has to be taken out every 3-4 hrs 24/7. Talk about getting sleep deprived…but I do what is helpful for the ones I love. Now I need to put eye drops in his eyes again & figure out what to throw together for dinner…..hmmmm.

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