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

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!

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.

I’ve had a tough few days. It’s therapeutic for me to share/rehashing the last 22yrs. It’s challenging & helpful but hard…
I left off saying my dad collapsed the day after our son got married & ended up needing a full bypass but they ended up only being able to pull off a triple bypass. He suffered a stroke that affected his frontal lobe during surgery. We were able to bring him home which is where the REAL caregiving came into play.

I look at this rehashing of the last 22 yrs & have realized how beneficial expressing oneself can be.

I/we took care of my dad for the next 3-4 yrs where it became obvious that this wasn’t going to work. We live in a GREAT neighborhood even though we all have property 2+acres. Everyone looks out for each other.

It really showed when we started getting calls letting us know that my dad was walking down the middle of the main road before the entrance of our street talking on the phone. He wanted to pull weeds around the house but he decided to take a walk & then would just wander off. Even when we moved him upstairs from the Mother-In-Law apt downstairs.

Anyway, after a few years of that we came to realize that it would be safer for him to be in a controlled facility. That worked for about a year but he found ways to wander off even with an ankle bracelet on. Unfortunately we had to put him in a more secure facility (Brookdale). He lasted a few more years & then passed.

Life went on a few more years before my hubby was diagnosed with Parkinson’s. I need to stop again because it’s time to get eye drops in 3 different times & give him his evening meds. 😔

Im soo sorry that youre going thru all this. I was a care giver 4 many yrs as i watched my partners health decline. Checking her pulse ox to determine if i could give her antianxiety med. Checking her glucose level to dtermine how much insulin to give. Helping her to the bedside commode etc etc. I ended up in the hospital the same time that she did. But i was in the stress management and she was on a medical floor. After she got out of the hospital, i had her placed in a long term care facility where she passed from copd about 6 wks later. I had never expected her to die. She had been resurrected 6-8x when she had been hospitalized the last 10 mo of her life. I have prolonged grief d/o which id never heard of before. Its been 2 yrs and 3 months ago. Learning to live without her has been difficult to say the least.i understand where youre coming from and wish u the best!!!

I’m SO sorry for what you had to go through. It seems that caregivers don’t get the credit they’re due especially caring for a loved one. It definitely can drag us down because we’re constantly caring for someone else.
I’m finding some relief sharing my entire story. Trying my best to arrange appts for myself in between all of his appts so I can keep going.
Loss is SUPER hard to move forward from. Hang in there!

Hi @kerstij. It’s been a couple of weeks since we’ve chatted so I thought I’d drop in this morning to see how you and your husband are fairing. Has there been any new developments with his gvhd? Hopefully he’s agreeing to take his meds more regularly and following suggestions from his BMT team. How are you holding up?