Anonymous wrote:

Anonymous wrote:I’m sorry you’re going through this Op. perhaps this is an ignorant question but if he is dying, with only weeks or months, why the need for rn 24/7 and to return to hospital for ct scans etc? I would think palliative care at home is less invasive? And again I’m asking because I don’t know, no judgment here….

OP here.

This would all be so much easier if they shifted to palliative care, but the doctor insists we’re not there yet. I’ve read that on average patients (maybe it was just those with cancer/his age?) are moved to hospice only in the last 2 weeks before death (when ideally it would be called much earlier) and I think he’s victim to that. They just keep doing more and more and more.

You can say no. I’m sorry for your situation but your family has the right to say enough is enough, let dad die in peace.

Anonymous wrote:Goodwin House - amazing place but not cheap

FYI they have a long waitlist for the independent living part.

Anonymous wrote:OP again.

And I actually think the insistence on doing more, at little potential benefit, is truly barbaric. It has already dramatically reduced my dads quality of life.

I'm so sorry. My parents both filled out detailed forms at their CCRC about what sorts of care they did and did not want, and it was a huge gift.

Of course, now when I visit my mom in AL (where she moved after 20 years of IL), there's a notice on the wall that she's got a DNR, which is a little disconcerting. But at least there won't be any confusion in a crisis.

Anonymous wrote:I have experience with continuing care communities from family and expense doesn’t correlate to great care, unfortunately. They are all short staffed. I think trying home care is a hood idea.

It’s also very disorienting to move, even for a sharp person, and she may dislike this at a time when she’s under stress.

There’s a continuing care place near me where there’s a huge waitlist for their memory care neighborhood and if the resident needs more care when they’re on the waitlist they require paid caregivers, at the expense of the resident, until a space opens up. They built too many apartments and not enough memory care spots.

Anonymous wrote:Goodwin House - amazing place but not cheap

Goodwin House gets its reputation primarily for independent living NOT skilled nursing or assisted living. Management team is not the best. The cost is outrageous too.

Anonymous wrote:

Anonymous wrote:I’m sorry you’re going through this Op. perhaps this is an ignorant question but if he is dying, with only weeks or months, why the need for rn 24/7 and to return to hospital for ct scans etc? I would think palliative care at home is less invasive? And again I’m asking because I don’t know, no judgment here….

OP here.

This would all be so much easier if they shifted to palliative care, but the doctor insists we’re not there yet. I’ve read that on average patients (maybe it was just those with cancer/his age?) are moved to hospice only in the last 2 weeks before death (when ideally it would be called much earlier) and I think he’s victim to that. They just keep doing more and more and more.

Who is making these decisions? Please talk to your parents and put a stop to all of this unnecessary “care”. Reading Being Mortal is a great suggestion.

Goodwin House - amazing place but not cheap

Anonymous wrote:OP again.

And I actually think the insistence on doing more, at little potential benefit, is truly barbaric. It has already dramatically reduced my dads quality of life.

Have you read the book Being Mortal? It talks about how doctors are trained to never give up and try everything, and that it's hard for them to be the ones to throw in the towel first. It might be time for you to push back if you feel the treatments are worse than the cancer, and that the end result is only a few extra months.

Also, do you want to move your mom into a facility based on your dad when your dad won't be a factor in the long term? Maybe she would prefer a CCRC once it is just her (as you've seen they won't accept someone in your dad's late and acute stage). I regret not getting my parents into a CCRC before my dad developed dementia. It would have been nice to have my mom situated while my dad moved through the levels of care as needed. Now they are similar to your parents, and likely my dad will have to go to a care facility while my mom stays in their home, and she will have to drive every day to see him. It will be harder for both of them :/

OP again.

And I actually think the insistence on doing more, at little potential benefit, is truly barbaric. It has already dramatically reduced my dads quality of life.

Anonymous wrote:I’m sorry you’re going through this Op. perhaps this is an ignorant question but if he is dying, with only weeks or months, why the need for rn 24/7 and to return to hospital for ct scans etc? I would think palliative care at home is less invasive? And again I’m asking because I don’t know, no judgment here….

OP here.

This would all be so much easier if they shifted to palliative care, but the doctor insists we’re not there yet. I’ve read that on average patients (maybe it was just those with cancer/his age?) are moved to hospice only in the last 2 weeks before death (when ideally it would be called much earlier) and I think he’s victim to that. They just keep doing more and more and more.

I’m sorry you’re going through this Op. perhaps this is an ignorant question but if he is dying, with only weeks or months, why the need for rn 24/7 and to return to hospital for ct scans etc? I would think palliative care at home is less invasive? And again I’m asking because I don’t know, no judgment here….

We had a good experience at the Virginian for SNF. (I have no idea how high end the independent living section is).

I have experience with continuing care communities from family and expense doesn’t correlate to great care, unfortunately. They are all short staffed. I think trying home care is a hood idea.

It’s also very disorienting to move, even for a sharp person, and she may dislike this at a time when she’s under stress.

OP here.

Thanks for all the suggestions. We are in fact going to try in home care - at the cost of over 10K a week (24/7 care with RN, equipment, home doctor visits etc) and a LOT of different parts to manage. It’s possible if not likely that it won’t last long before a facility is needed (for frequent ct scans etc) but at least he’ll be able to be home, I hope for a few months if not longer.

And a note to others: the good continuum of care places (several mentioned here) offer priority to their retirement residents, and don’t have last minute space available. I seriously think if we weren’t able to afford in home care he’d end up at a facility with one star (out of five) from health inspectors (or, maybe, relocating some place far away from home where availability could be found). The nursing facility situation is abysmal. ABYSMAL! I now deeply understand why people buy into these continuum of care places while they are still healthy, and I wish my parents had done that as well.

Are you sure about the equipment needs? If they have a generous budget, most any kind of medical equipment can be rented. I’ve worked with hospice patients who were at home on ventilators with feeding tubes, IV, vitals monitors etc. Although I am only an unlicensed caregiver, in my state in a private pay patient situation we can be trained by patient/family and don’t need licensure to administer meds, provide trach care etc.

It may be different in your jurisdiction but it’s worth clarifying because very likely your dad would prefer to die at home in familiar surroundings.