Caregiving taking its toll: Stage 4 Glioblastoma & Lymphoma

I am a liver transplant patient unos waiting list for donor. Mayo in jacksonville florida. Came to this forum to get a feel for caregiver side of things . Not a day goes by that I am not grateful for the the gift of a loving caregiver in my life. Not a day goes by that I am not filled with guilt about my physical situation and the burden I am. We are both making it through each day keeping our eyes on the prize of a return to a sense of normal, post transplant. My partner has picked up my household daily tasks, but she is pretty toasted from it all. She doesn't allow me to hire outside help for yard, flower,garden, minor repairs. 60% of days are OK from mental aspects. She has a 9-5 job from home office that is demanding at times. Some days I feel I would rather be dead than see her work so hard. I posted here to let the caregivers know we patients feel you. And thank you to all who make this sacrifice.

Hi, @jmp1234 As my wife’s long term caregiver during her 14+ year war with brain cancer, I appreciate your post, point of view, and kind words for caregivers.

I wish you well as you journey through your wait. Also, give my regards to your partner on their caregiving decision!

Strength, Courage, & Peace
Scott

Very kind of you. Thank you.

Thank you for ur honesty and gratefulness, you have a great caregiver. I lost a husband who took a great deal of care, work, etc; but after he was gone I missed him so much-having him sick was better than not having him at all. We are unique and we are all valuable even in our sickness. Will pray for u.

My heart goes out to you.
My spouse is 71, he was diagnosed with gr 4 glioblastoma and it was totally resected last July. He’s had 22 rad treatments and 42 dys of Temodar. He started chemo main w/ Temodar last October and continues til this coming oct.
Last 2 MRIs showed clear and he gets another mri tomorrow ( the MRIs are ev 2 mos now)
Yes, it’s very upsetting and depressing at times as it’s a wait and see. We have a lot of hope but the statist aren’t hope. Recently my husband’s been more tired, light headaches, hes more grumpier than usual) i don’t know if he’s apprehensive about next mri and what might be found or if these are symptoms of regrowth. It is like being in limbo.. all your life.. even myself I wonder what now? All your feelings are up in the air as is your and his life.. it’s like a twilight zone. I’m very sorry you and your spouse are suffering through this now.. I read each person with this type of tumor responds differently.
I’m just trying to be calm, light, and present for my husband, not knowing if he has months or yrs left,wanting to keep the environment as pleasant as possible for him. My husband’s tumor was in an area that luckily didn’t hinder his motor skills and thinking drastically. However, as I’ve said, the last week he’s changed and it does make me really sad and afraid that it’s a sign of tumor regrowth. Until the mri results are gotten with oncologist next wk, I’ll keep being normal, realistic and hopeful especially when speaking to my husband as I’m sure he’s worried as well.
It sounds like you are doing the best you can and he is glad I’m sure to have someone like you to help him through all this. It’s tough, and heartbreaking and stressful…. Hang in there…

I found a caregivers website by Pamela D Wilson.
She offers suggestions and answers email questions.
This has helped me a lot .

How do I find her?

@saintdijo here is the link for the website of Pamela Wilson. The site looks very interesting!
https://pameladwilson.com/pamela-d-wilson-story/
Were you looking for something particular?

@saintdijo How are you doing? I hope you have found some help.

No better off, just check his vitals & off we go. BUT I decided to change our entire situation…we will be selling our home & moving to NH where our daughter & family are located.

She has been begging me for months; I decided because I am going to be 82 & I myself need a place - just can’t DO ALL THIS ALONE. Should have did this years ago.

I also think husbands care will be much better in a populated City in Manchester…so my advice to all - don’t wait until things get desperate to make decisions OR let emotional places or things freeze your thinking of what is best for all….

yes, ya spent a lifetime of deciding - now is the TIME to ‘let go’; but please, please don’t wait too long