(no subject)

[joebanks]

Went back to the doctor for the awful truth; mom's cancer has spread into her lymph nodes and her chest wall. On first glance you wouldn't notice, other than fatigue, mom shows no sign of illness. Her color is off and she is losing weight. We are going to enter her in to hospice, luckily she can stay where she is. No one wants to give me anything specific but i did get her nurse to say she would be lucky to be around in six months. I had to make calls and tell so many people the same thing today, each time harder than the last. We all knew this was coming, i'd just hoped that for once she'd have the good luck to have her heart stop in the middle of the night - because that's what counts for good luck these days.

Comments

[rafqa]

I am so very sorry.

Why did you choose hospice, may I ask?

[joebanks]

Thank you, i know you mean it.

I think choosing hospice will lead to a more coordinated focus on keeping mom comfortable as this progresses to it's end. Orders will be written for pain medication that she doesn't need yet but when that likely becomes a necessity the prescription will be ready. Nursing care beyond what is provided by her facility will start. All the things we might haltingly figure out too late will be suggested.

Is that what you're looking for?

And, how is your mother doing? I just read the reports on mom's scans and tests and it sounds like she'd crack like an egg shell if she hits the ground to hard and yet your mom is healing?

[rafqa]

Thanks. That certainly makes sense. I've just had kind of a turnaround in my views of hospice in the last few years, and so I always wonder why people choose it at any given time, and what they expect from it.

My mom is healing well from the hip surgery. Her chaotic mental state is the real central issue; there are times when it's like living with Sybil, or Linda Blair. More and more times, unfortunately.

[joebanks]

Your views have changed from what to what?

You are really amazing for dealing with this; you may be saying to yourself that you had no choice; but you did and you also had a choice on weather to do it well and you are. Don't ever forget to be kid to yourself.

[joebanks]

BTW, I forgot to mention sometime back that we were at the store that had the einkorn wheat before but they didn't have it again, I should have bought it for you then.

[rafqa]

Well... when I first encountered/read about hospice in the late eighties, it was still rather new and it seemed eminently sane and merciful. But since it's become institutionalized in the American system, I think there's been a lot of change (not surprising) and that it's often being driven by the same economic factors that drive the rest of health care. No one wants to torment people with useless medical treatment when it's just not going to be effective-- why hospice was invented in the first place; on the other hand, I think there are some real problems with categorizing people as officially dying, especially on such a large scale. I fear people are being marginalized out of the core of care provision, a kind of ghettoization, and maybe not always for the best reasons.

There are so many different entities providing hospice care at this point that from what I've read and seen there's a lot of variation both in approach and quality. The model these days is almost always home care, it seems, and I don't think hospice generally provides much nursing care-- there's usually like a nurse case manager and most of the actual caregiving is done by family. There are also a lot of supernumeraries who may or may not be useful-- often not. And though hospice is supposed to be the pain care expert, I'm finding that the home care model doesn't necessarily provide all the pain medication that might be required. Your situation may be different since your mom is already in some kind of nursing facility. But home hospice around here is not providing IV medication. A good friend of mine, who's kind of an expert in these things, pointed out that dying at home is not always all it's cracked up to be.

My other concern is that there's now a thinly-veiled euthanasia element to a lot of hospice care and I really find that very chilling. A lot of agencies don't seem to allow ANY kind of therapeutic intervention at all-- no antibiotics for infections, etc. My friend's mother was not allowed to get any kind of treatment for very uncomfortable edema, for example. Another friend, who died years ago, was only expected to live a month or so, and ended up living for whole year. She spent the entire time in bed, was given no kind of physical therapy or anything to help her regain any strength or function. It's one thing to accept reality about there being no remaining reasonable medical interventions for a condition, but it's another to entirely sign away your right to fight for your life and be treated as a living person, and I think that's what people are being asked to do.

Good to have the palliative care model legitimized, but not good for doctors or for patients to have the end of life completely divorced from the continuity of care that has preceded it.

There's more, but that's most of it-- I'm a minority of one, of course.

[joebanks]

It seems the only way anything can run in this country is for it to become a profitable business. That said, my mother's hospice entity was created by three non-profit organizations that got together to pool resources. I work for a non-profit and there is still the make money mindset but, at least they don't think every cent spent on their patient/customers could have gone into someone's bank account.

My father-in-law went through hospice last year at a for-profit institution and everyone was satisfied with the care there too. There was no other option for him, he was at the end of his life and for my mother, it's to early to tell. I don't think she's taken an anti-biotic since she's been in assisted living.

As far as treatment, we were told that we could leave the hospice program at any point and reenroll if we wanted too. Again, this is very new to me and it's not home care so I can't speak to other peoples experiences.

Mom has in the past 10 or so days, been visited by a nurse three times, a nursing assistant three times, once a social worker and a chaplin; this is besides the care she gets from the staff at the nursing home.

I think anytime we are sick we should all get palliative care.