Hi @jbarnum01 I am Scott and while I am sorry to read of your dad's health issues, I am glad you found Connect and this caregivers group! I was my wife’s caregiver during her 14+ year war with brain cancer and have had a stoke myself. Sound like your dad, mom, and you have your hands full and more!

One of the many challenges of caregiving is that each patient, their illness, and their path is unique. That said I'm hopeful some of the lessons I learned as a caregiver might be of help.

While I'm not any kind of medical professional, many of the symptoms you describe are similar to the stroke-like effects my wife had and I struggled with. The first thing I had to do was grow thick skin and not care what other folks were saying about my wife, etc. when we went out. It is often hard to remember it is the disease taking and not the pre-disease person. Our grandchildren came to understand grandma was sick and it helped them develop more empathy over time. It is very easy to get totally isolated with being a patient/caregiver with chronic illness. Yes, lots of people commented on my wife’s actions, abilities, inabilities, and her language. However, taking her to get out of the house was far more beneficial to her and me and I learned to either hold my tongue or at times simply look at someone who had been rude and say “yes, brain cancer is a terrible disease!’ Then with a gritted-teeth smile I’d walk away.

As a stroke survivor myself I say your mom might need to have some medical professional explain the importance of her husband taking his meds as crucial and not something in her control, beyond helping him take them on schedule. She may wish him to not be on anything, but in my case they are keeping me alive! For months my wife had to take several of her meds every two hours around the clock. I take several a day and I welcome that I can and that hopefully they are helping me.

Over the years my wife disliked several of her doctors. No outward reason, but there was some vibe that she felt and it didn’t go away. Some we had to suffer since there was no alternate in our town (her GP), but when we found a good one (like her neuro-oncologist at Mayo) we did everything we could to stay with them. Many we gave up on and found a replacement!

Another thought is perhaps having a social worker talk to your mom and dad might be very helpful to get some help and a better understanding of the ongoing changes in your dad. My stoke effects have not gone away, won't ever, and it was a struggle for me to accept them and my new limitations. The same was true for my wife, but our lives got far better when we accepted what had happened and began to try and make the best of our different lives as best we could.

I also hope they have had time to get their crucial paperwork done for advance medical directives, POAs, estate, and final wishes written out.

If I may ask, how old is your dad?

Strength, courage, and peace!