Not sure what to do

juli99

This is my first post here, so my apologies if it is not in the right place. My mother was diagnosed with Stage 4 ovarian cancer a few years ago. At the time of diagnosis she had stopped eating and it took a long time before she was accuarately diagnosed and agreed to start treatment. She lost a lot of weight and was on the verge of death. One immediate family member strongly opposed chemotherapy. 

She did receive surgery and chemo, and has remained relatively cancer free for two years despite a slowly rising CA125 number (which is an indication of this cancer). During this time, however, she has struggled with side effects of the chemo including problems with hair regrowth on her scalp and infections there.

In the past month, she both was referred for treatment options due to this rising CA125 and also took an antifungal med for her scalp, which appears to have sent her into a negative spiral of nausea, chills, no appetite. The last thing she needed as she already needed to gain weight.

I learned from another family member that she had an incident while driving (I assume passed out due to not eating) and got in an accident. She has not told me this directly. I live an hour away.

This weekend we are supposed to go with her and my dad on an overnight trip and to visit relatives. This family member tells me she is secretly dreading the trip.

I have many of my own responsibilties and issues that are adding to my worries. I have two children. I work full-time, though I am a freelancer and my schedule is flexible. My husband is absent most of the time due to his work. We also have financial struggles, and I can't afford not to be working every single weekday.

I guess I am wondering what I can do to build myself up enough to be able to handle all of this again? I don't feel like I have any strength to handle it. The family member who called to tell me about the car accident was telling me I need to get her to eat, give her Boost, etc. I just don't feel like I have it in me to fight that fight again. Two years ago I could not force her to eat, how will I do it now? As much as I appreciate the information, I don't know what I am supposed to do with it. I wish it had come from my mom directly.

Any advice would be appreciated.

Catholic

You do the best you can.  In

You do the best you can.  In terms of building yourself up to handle the caregiver role, you have to eat right,
exercise regularly, get a great night sleep every night and take vacations (even small vacations) when you
can.  I feel like every day Im preparing for a marathon and if I dont eat, sleep or exercise, I get frazzled
and burned out quickly.

Everything you wrote I have personally experienced.  My wife was taken to an emergency in June and she never
told anyone she went.  Two months later I received a bill in the mail for the services.  My wife is evasive, lies,
is quick to get angry, eats fastfood daily, sleeps too much, is irrational and have a very negative attitude
about everything.  Every day brings unique challenges that I have not enjoyed.  I would argue that my wife
has entered the "I dont care what you think phase" and if I ever question anything, she snaps back "I dont
care".  I dont feel like I have any ability whatsoever in persuading her to change her lifestyle for the better.
Nothing I do or say improves her mood.  I do the best I can. The key is taking care of yourself; otherwise
you will burn out fast.  If I dont eat healthy, sleep and exercise, my wife's antics can really get on my nerves.
If I eat, sleep and exercise, I have been able to survive.

 

 

TheTerry

No guidebook

Hi juli99 and Catholic. You can do only what you can do, and that has to be good enough. I am sole caregiver for my sister  who is in palliative care at home with metastatic uterine cancer. In mid-August, the doctors gave her a month to live. That was nearly three months ago. I know she's declining and the whole situation breaks my heart. She's my younger sister and best friend, and I'm going to miss her like crazy.

I actually live 300 miles away but have been at her place since August. I havent found a way to stay in very good touch with my friends at home; I don't get enough sleep; my eating is erratic. Oh, and my 7-year-old  cat had to be put down two weeks ago. I couldn't be there to give him one last scritch.

I try to take pleasure in small victories (e.g., staying on top of the laundry, keeping the meds straight, getting my sister to eat, just taking good care of her) and I try to go out whenever we have a PSW here (I also get two longish respite periods each week  one of which I spend at a caregivers' get-together at a hospice here). But this hits me hard when my sister is having a bad day, and I know it will hit me harder when she dies.

I don't know what to do beyond what I'm already doing. I know I need more sleep which I do take when I'm really whacked. Sometimes I just sleep during my respite periods.

There is no manual or rule book for this, so we just have to wing it as best we can.

NormanLovesAileen

Hi,

Hi,

 I really get what The Terry means about small victories.

When my wife wasn’t eating I learned to make this delicious Tom Ka Gai soup she used to love.

It was the best feeling to watch her enjoy even a tiny cup of it.

Try to focus on the little wins, they will be a great comfort later.

Love to you