I still have some many unanswered questions.

seisenha

seisenha

we said goodbye to my Mom on January 10th. It was just over a year after her cancer spread to her brain. She did whole brain radiation and gamma knif to protect her hippp and PFC. The radiation caused dementia. In August she had no new lesions and was told MRI’s could be now go every 6 months from 4! She was having eye issues in her RT eye that everyone said was not due to the cancer or radiation. She saw specialists for that. I flew home in early October because she was starting to loose her ability to manage her ADLs and Dad was struggling in his ability to care for her. He was worried about her falling and her memory was compromised. We had a neuronpsych done in September - mom could walk into the doctors office then. So we know she suffered brain damage from the radiation and anticipated some. Mom kept a falling and was hospitalized on my birthday 11/5. They did very little other than give her a few bags of magnesium and refer her to rehab. What a joke and how disgusting and neglectful that experience was even with my Dad was there very day advocating and overseeing her care. He was so upset and did not think it was helping that he decided she needed to be home and made those arrangements.

Mind you - my dad did everything right and took such wonderful care of his best friend for 56 years. He trusted the doctors. It was hard to tell if moms weakness was related to the cancer or the dementia or a combo of both. They have the best medical coverage $$$ could buy and still I feel like there was medical gaslighting and that providers took advantage of them. Roswell Park is horrible in coordination of care and ongoing aftercare services….I am unimpressed

How do you go from needed scans every 4 months to 6 and then you are dead before your next follow-up?

I accept moms passing and know she is free of pain and suffering . I knew when it spread we were on borrowed time. however, the picture always sounded too rosey since the metastasis.

After mom was in the hospital I decided I needed to go back home to help my Dad and Sister to care for mom. We knew she was dying. I had the ability to work at home and be there with my family. That time I had was a blessing and so so difficult.

I won’t ever forget my last night with my mom back in early October when mom was still mostly Mom. We were laying in bed watching scary movies and snuggling like when I was a child. I am her “Frog” and “Carbon Copy.”

For me, it’s about how we got here and finding clarification…I know that will never happen, but it’s just so frustrating.

(Yes I have just rambled…..it’s about the best I have these days since she has been gone so I’m sorry if none this this makes much sense).