Mother just starting treatment but care options are an issue

Posted by cmerritt1351 @cmerritt1351, Jan 10 8:16am

@colleenyoung My mother is now 77. They discovered the cancer on her pancreas in July 2022, about 6 months ago. The growth had been slowly blocking her liver duct which caused symptoms of liver failure and sent her into the hospital. That's how they found the cancer.

The liver failure, though, was very bad. The treatments and illnesses caused by it cascaded through her body causing multiple hardships and they thought we would lose her many times. As the liver slowly healed her kidneys appeared ready to fail, then they slowly healed but her muscles had an atrophying illness and her heart was poor. She'd had quadruple bypass years ago. The hospital where she was suggested hospice or palliative care only. She survived but it left her too weak for any cancer treatment or self-care.

About two-months ago the cancer treatment center at University of Maryland agreed to start her on a low dosage of Gemcitabine and Abraxane. She has seemingly suffered few side effects but it's only the first course of three (3 weeks on, 1 off for 3 courses) so we won't know its effectiveness for a couple months yet.

However, her care situation has become a huge issue. Neither my sister nor I are in a situation where we can live with her. My mother's cousin, who has gone well above and beyond, has lived with her these past months and finally must return to her life that is missing her.

And then, my sister had a tragic loss in the midst of this when she lost her husband unexpectedly and is already, obviously, emotionally wrecked. She's doing her best to help with our mother but obviously she must focus on herself and her grade school children. It's too much.

I expressed to my mother's primary nurse at the chemo center a need for help and a sense of abandonment by the hospital. I have personally requested many times about help from a social worker or some guidance on finding home care, or nursing home care, – what level, good resources, etc – and been told "look on the internet." Which of course I've been doing every d— day, every week, all the time but how do you know what you're looking at? How should I/we know if assisted living is right, or a nursing home, who to talk to really about quality of care, what she would need, how to pay for it, can we pay for it, etc, etc. And they seemingly wash there hands of it, as if they're saying, "we just hook up the IV."

Going there, surrounded by other patients, it still feels like no one else in the world has ever had to deal with this because no one on the staff knows anything, and it's disheartening. Or worse, it's like we're dealing with some devil that we have to ask the right question, or use the right words, to get answers.

The only reason I'm even here on this forum is my sister found you a few days ago while looking for information on the internet. It's just random luck of using the right search terms.

It feels impossible to handle and has set my emotional and stress levels too high, with the panic and fear. Between fear of losing my mother, fear of not doing enough or not looking under the right rock for information, fear of losing my job or home from leaving work so much, fear of having a car accident or car failure from driving so much, fear from being broke, and on and on and on… it's just impossible. Impossible.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

I am very sorry about your situation. Among other things, it seems you need respite care, which is short-term relief for primary caregivers. Your post indicates you’re in Maryland so you might reach out to the ARCH National Respite Network for Maryland state information on respite providers or programs.:
https://archrespite.org/respite-locator-service-state-information/152-maryland-info
Also, contacts you make through this organization might help find solutions to related issues for your mom.

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Keeping you in thoughts and prayers. Feeling for you in your efforts to be of service. Sorry to hear that the caregivers seem to be so uncaring. Seems like palliative care is a good direction. I believe networking on this website is very helpful and I have learned a lot by hearing your story as a patient with pancreatic cancer with no family member to provide any support, I am wondering how I will manage. My first round of chemo I called an ambulance for myself and spent a couple of days recovering, I arranged a ride home with a dear and kind friend. My family members who have offered for me to come to them don't live close to the quality doctors I have here. Thanks for sharing your story.

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@cmerritt1351, I hear the anguish in your message. I hope you saw the caring and helpful posts from @gardenlady1116 and @patientone.

In addition, I have a couple of thoughts to try if you haven't already. Not sure these are options for you.

Contact Patient Relations at the University of Maryland (sometimes called Office of Patient Experience) to discuss your concerns about her care.

Might you transfer your mother's care to another facility closer to you? Might Mayo Clinic be an option?

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