Reply to Advice welcomes - single parent getting a terminal diagnosis and I'm far away

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[quote=Anonymous][quote=Anonymous]Oh wow OP I am so sorry. So the diagnosis is definitely terminal, yet she is determined to do treatment? That is so tough but all you can do is respect her wishes. Hospice is easier in that they manage the pain with meds and keep the person comfortable and cater to them in our experience, but yes, it must be her choice.

Do you have a therapist? It could help you give herself permission to completely accept her decision and let go of guilt that you cannot give her the level of support she wants. Is your mom saying hateful things to you? Those jabs can make it so much worse.

This may be too deep and too off the point, but if you could wave the magic wand what would you want our culture and country to do? Hospice is truly an amazing program from the experience of so many of us, but she has to want that. What do you wish she had that isn't in place? [/quote]

Yes, it's a terminal diagnosis - though there is a treatment that for some people can mean substantial additional life (potentially up to 2 or 3 years). So that hope is meaningful to her. I don't think it is at all likely that she will have that outcome, but I don't really have any way to know and she is relentlessly hopeful.

A problem w/ hospice is that they will not allow ongoing treatment. So she can't avail herself of hospice services (which would be soooo helpful and relevant) while still pursuing treatment. That is one of the things I wish I could magically solve - the level of support available to someone w/ a terminal diagnosis who wants to simultaneously prolong AND maintain quality of life.

The other nightmares I wish I could fix have to do with the availability of quality, reliable, in home care supports (health care aides, visiting nurses, physical/occupational therapy, etc...). It is a nightmare to try to find all of that - especially at a distance, and you have to piecemeal it together. And often you need physicians (or rehab ctrs or hospitals) to order those services, in which case you're at the mercy of the skill completing the paperwork, or their individual choices re provider (rather than whom you might prefer based on ratings, prior experience, responsiveness....).  Then you have the problems re individual specialists who just want to treat their specific focus (like the metastasis) without regard to a holistic view of the individual and their likely path. Then you have the palliative care team who may be very quick to decide this is an imminently terminal situation - which doesn't give the patient the right to make choices about treatment in the way they want, or the support to the family navigating really tough emotional waters. Then you have the dynamics of physicians who can be territorial or autocratic and don't like to work across specialty areas to coordinate care. Then there's the overall shortage of available quality healthcare professionals for in-home support. I had to put my mother in a facility because it took weeks (and the support of a facility issuing the orders) to line up the care - as a private individual it would have taken weeks longer. And so on...

It's just been horrifying to see how fragile the healthcare infrastructure is for anyone trying to avoid simple institutionalization, and that's for someone with resources/insurance/family support etc...

Thank you for your sympathy.  No, my mother isn't being nasty - she's just profoundly needy (and legitimately in profound need) and completely absorbed with surviving. Her focus is not on the toll this is taking on others, but I'm not sure that it would be reasonable to expect it to be. I really thought she would act so differently when we got to this point - it's been eye-opening and upsetting.  And yes - I do have a therapist - thank god!! :-)[/quote]

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