Palliative care, Advance Directive, End of Life Options, Hospice

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calj
calj Member Posts: 7 Member
in Caregivers #1

Warm hello to all,

I'm new to this website. I was diagnosed with uterine papillary serous carcinoma (UPSC) stage 4B in 2017 (age 58). At the time, the statistics gave it 15% survival after 5 years. This statistic prompted me to almost immediately start to figure out what/how should I address things to start "wrapping up my life" so I could make things as easy/smooth as possible for my husband.

So, I'm still around and I wanted to share what I've experienced, learned, advocated for when it comes to the topics in the subject line. All of these topics can dramatically affect the caretaker(s) - physically, emotionally, spiritually and financially.

If your patient/loved one will not address these topics (for whatever reason), PLEASE, for your sake, make appointments with the patient's doctor(s), cancer social worker to find out how you can best cover these topics with the patient (and, ideally, get filled out & signed documents - advance directive, ).

It's heart-wrenching to read various articles and posts from the caretaker's point of view and know there are things out there to make it not as excruciating (if nothing else, the mental peace that some of these things can offer).

Though I've been NED for 2.5 years, I continue to stay on top of these topics and discuss them with my husband.

Palliative Care social worker and/or cancer social worker should be able to help you discuss, understand and fill out the Advance Directive form.

Ask ALL of them (doctor, Palliative Care, social worker) about end of life options in your state - hospice, medical aid in dying, voluntary stop eating and drinking (VSED). It's understandable if spiritual and/or religious beliefs make you and/or the patient uncomfortable with these topics. BUT, please, at minimum, get an understanding of what they are, what they entail. Research these topics online to get a general understanding before you discuss them with the medical personnel. There are documentaries on these topics that you and the patient can watch individually/together.

IF your patient is currently in hospice, consider discussing VSED with them as an option. My limited understanding is some hospices will support the patient who has decided to stop eating and drinking and some others won't. You can possibly consider changing to a hospice who will support the patient.

THANK YOU for all you do as caretakers. I've told my spouse numerous times that I truly believe you have the more difficult and challenging role.

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  • jdubya
    jdubya Member Posts: 6 Member
    #2
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    Thank you for this post. We were fortunate enough to have to go through this early on, as Wisconsin requires it for the spouse to make any decisions. As for the eating/drinking at end of life, it's not really a choice as the patient's body just can't anymore. My wife hasn't eaten/drank in over a week and just doesn't have the urge to. It's is hard to comprehend, but as hard as it may be, caregivers and patients/spouses need to research and understand end of life just in case.

    We didn't want to at first because it felt like giving up hope, but I'm glad we did as it prevented me from possibly harming my wife worse and causing me mental distress.

    It doesn't mean that this process isn't any less difficult and painful, but it does help with easing some stress.

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