Advice welcomes - single parent getting a terminal diagnosis and I'm far away
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Anonymous
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OP here, thought I'd give an update.
I went to be with my mother and it was far worse than I anticipated. I spent several days taking care of her while triaging her clinical care, setting up the treatment plan for the metastatic cancer, and getting her in for some short term rehab while we lined up in home care. I got her a palliative care doctor to coordinate things clinically, I got all her critical diagnostic testing accomplished before she went into rehab, and I got a live-in aide established so she could come home. (She cannot pursue the treatment for the cancer while in rehab - they won't support the cost because they won't be sufficiently reimbursed. It's a nightmare.) So I had a week of managing crisis, then slightly more than 2 weeks of calm while I lined things up. She came home from rehab and a sibling spent a week with her (and the sibling was remarkably functional and helpful, thank god). BUT. My mom is significantly worse physically, requiring a level of care well beyond what we anticipated - which may not be feasible even with 24/7 live-in care. If she elects to enroll in hospice (which she doesn't want but the palliative care doc and I think is appropriate and would provide additional useful services) she has to discontinue treatment. She is lucid and wants to keep going w/ treatment so therefore is ruling out hospice care. She's currently back in the hospital overnight to drain fluid from a lung - which may help with immediate relief and improved stamina but is a short-term fix. She may or may not go home again today. I'm going up again tomorrow for several days, and planning to be up there for another week at the beginning of August. One or the other of my siblings might be up there for some portion of the weeks in mid July. So we are doing our best to give her every chance to make her own decisions, have as much control over her life as possible, keep her safe, etc... And we have all the "right" resources - money, insurance, management skills, live in care, etc... And even so it absolutely feels like we are in constant crisis mode - not a stable, safe, secure environment. So I think my visit this week may be about having to tell my mom that this is it, that she needs to accept that this is the end of the road. And that keeping her at home may not be an option because her children can't relocate indefinitely and even if we could, she needs round the clock support for absolutely everything (from toileting to eating) that is beyond what we are able to do personally. It just continues to be awful, in ways I am shocked by (my mother's response to this, the nightmare of trying to weave together a supportive healthcare web, the UNBELIEVABLE work it takes to coordinate care...). And even though my sibling has been great this past week, I can't not worry. So I'm not sleeping, I'm constantly rearranging my family's schedule and trying to figure out what I can line up to help them so I can take off, trying to do my job at a fairly critical time when I can't just take FMLA, and barely keeping my head above water. I guess I'm using this post as a safe way to vent, more than anything else. I know what we are experiencing isn't unique - but it's unique to me. Even though I've buried a best friend, a father, several other friends and family members, and been at my mom's side through several years of nightmare medical stuff - I am shocked and horrified by how this is happening. And I have no idea how long it will go on. My mother has a body that is falling apart but a steel will that refuses to give up - so this is not shaping up to be quick, calm, easy, or peaceful. I wish I could wave a magic wand and completely overhaul how our country and culture supports and manages the end of life. Thank you for listening! I have reread the advice offered here MANY times in the past month and it has been a real comfort. (And I can't believe it's already been a month!) |
Anonymous
OP again - jeez that prior post is horrifically long. Sorry!! 
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Anonymous
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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? |
Anonymous
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!!
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Anonymous
| Thinking of you, OP. Im sorry this has been such an ordeal but you sound like you are handling the circumstances the best you possibly can! |