Caregiving: I’m frustrated and exhausted.

Hello, @deek15redpeppers Nice to have you back! Not sure if you remember me, but I'm Scott, and I was my wife's caregiver during the 14+ years of her war with brain cancer. You're absolutely correct that 24/7 caregiving is a very challenging and incredibly difficult grind. Good to read you have night help! We were unable to afford help until my wife got her prescription for home hospice care.

My wife, too, would often lash out at me and it was always hard to take. I did raise this question with her neuro-oncologist and he said, as you did, it is the disease talking. I always reminded myself of that, but it sure still hurt a lot at times. Don't know if it helps, but her doc also told me it is very common for patients to lash out at the person they feel the closest to, and safest with. Odd to me at first, but then I understood it. My wife felt safest and most loved by me, so she could let her frustrations anger show, knowing, in her heart, I'd hang in there with her.

While I know each patient, their journey, disease, and caregiver are unique, one thing that I decided early on was to not go off into the future with my wife. She knew her future was uncertain and dark, so my talking about future possibilities only darken her thinking. So while I often thought of "what should I do in the future if..." I'd keep it to myself. In my wife's, case all she wanted was to know I was there for her and that was what helped her better maintain her calm. I realized that I was better off not even mentioning things that I was planning to do at home, like "I'll change the bed tomorrow", or "let's call the kids on Saturday". It was better if I just asked "want to do....whatever...at the time.

We, too, had a Hoyer lift and my wife hated to even see it! Again, it was a reminder of what she could no longer do and at one time she did tell me my having to use it made her feel guilty that she was such a burden. I had to keep ours in the garage and wheel it in when needed. I made the decision to change to an adjustable hospital bed to be able to move her from bed to wheelchair without the lift. I did this with her nurse being the one who made the suggestion 'for her comfort' so I wasn't the bad guy. She still hated the lift, but we used it less often,

I will be hoping your night help works out for you and her!

Strength, Courage, & Peace

I haven't taken time to log on for many weeks - or even months, but I need to vent . My spouse has renal cell carcinoma with mets to the lungs, sternum, lower spine and sacrum. Mayo Rochester discharged her 2/14/22 directly to the car to the airport to Phoenix to be in the care of hospice. We are snowbirds and this is where she wanted to be, for sunshine, warmth and our many friends to support us.
Her pain is under good control, but her mobility is up and down, so we have a hoyer lift to use when she can't stand. I have to ask friends to help me use it, as she is heavy and the lift doesn't move well on the carpet. She criticizes me because I can't do it alone, even though she was a nurse and knows the safety issues of using a lift. I also push her around our RV park in the wheelchair, including up to the handicapped shower by the pool. I never hear any appreciation for my efforts unless I specifically ask for a thank you!
I am tired of 24/7 caregiving, as she doesn't sleep much at night and refuses to take sleeping pills. Friends have volunteered to do the night watch but as of last night we have hired an aide for 3 nights a week. I'm hoping and praying it will work out. The cancer is supposedly slow growing and we have no idea of any timelines. I can't imagine doing this for years, as some caregivers have done....

What bothers me most is her attitude of late - She told me in all seriousness that if I put her in a care center, that will be the last time I see her. We have been best friends for 57 years, partners for 25 and married for 8. I can't get her to understand that I would only put her in a facility if I absolutely couldn't physically take care of her and the medical providers say I must. Does anyone else have a spouse threatening such awful things? Friends say it's her anger at the disease, but it get directed at me and it really hurts.

Okay, enough whining from me. Thanks for listening.