Well. Not quite sure where to start - I've only written on this forum once before for advice and it was very kind to get different perspectives and advice.
We stopped my mother's immunotherapy late last year after multiple consults with doctors and specialists and since December, we havent been actively treating her cancer. My mother is stage 4, with mets and she has a growth that's 7 cm in her chest. A week ago, I made the decision to transfer her from palliative care to hospice care. She isn't actively dying... but I just want to focus on managing her comfortably and after she developed pneumonia earlier this year, a dry cough has started to plague her that seems to be getting worse and it just made me realize..."...this will get worse, won't it?"
I consulted with her Pallative Doctor and I came to accept that it's time to start hospice. I think the advice and things I researched also fueled my decision with my mom. She doesn't want radiation....and she doesn't want to be kept here through machines. She still has her other issues including parkinsons but so far, she's still alert, can still get around, eats well, but it's so clear to me that my mom was probably suffering from not being able to manage herself properly - since stopping her treatment, she's much more clear, not as frazzled. However, it's so clear that her parkinson's may have developed some type of dementia and she needs much more supervision and advocation. I regret not understanding her plight better or her needs better. She has clear memory issues and one of the worst feelings in the world is when your own mother doesn't remember helping you pick out your wedding dress. It's awful to know that not only is the cancer taking over, but it's more awful to see how aware she is when she can't recall things about you. Things that she was there for that barely happened 5 years ago.
It's been a roller coaster of emotions for me but I can only imagine how...awful my mom feels. She still has her own deep feelings, memories, and thoughts and while we don't always land on the same page, I feel for her deeply. We sadly always had a strained relationship but we tried over times to be better. I just wish it...had been better.
I feel like I'm failing at everything else and can't manage things well anymore, but everyone tells me the opposite. I used to be able to make good time with scheduling or just handle multiple tasks, but it just - I must be stressed out of my mind. Albiet, this stress feels so different. It's not a heavy feeling, but rather, it's constant and runs through me causing confusion and weariness.
I always knew cancer was terrible. I always knew sadly that this cancer, which she originally developed in 2007 and went into remission, would come back one day, but I just never imagined she would develop parkinsons and never would I had thought she would develop dementia. I had no idea that could happen with parkinsons. No one thinks that terrible things could happen, one after another, but this has been such a terrible rollercoaster.
I just want to get off.
If you read this, thank you for your time.
It is very exhausting from the overall anxiety you hold inside, and the anticipatory grief rolling through your mind constantly. All of us who have lost people to cancer go through the rollercoaster ride of emotions.
You are doing what you should, and doing it the best you can. That's what matters. Stay strong and calm, that is what helps the most. Hospice is what works best in these circumstances.
Because of this post, I will be looking into hospice care for my mother, as she has advance Parkinsons and is in a stage similar to what has been described in this thread.
A big Thank You to all who took the time to offer their experiences and suggestions in this post. (I feel less alone now.)
For us, hospice was the best thing we did.
I'm sorry this is happening and I wish you peace.
The dementia that typically goes hand in hand with Parkinson's is Lewy Body dementia, which is the second most aggressive of all the dementias with a life expectancy of just 5-7 years, so I'm glad you opted to put your mother under hospice care as they will make sure that she is kept comfortable and pain free until she leaves this world for the next.
You're doing a great job with your mother, just please make sure that you're taking good care of yourself as well as you matter too.
God bless you.