Medicare and caregiving

Took the words right out of my mouth. It's not like there isn't enough first hand wisdom in the experience of caregivers. We are here. We can tell them what works what doesn't.

Fingerscrossed this works and works soon.

This sounds kind of like hospice, but without the expectation that the PWD will pass within 6 months. This sounds like a wonderful program for caregivers who desperately need support.

My spouse is currently on a Medicare Advantage plan, so we're not eligible. I'd love to hear from people who apply.

Thanks for posting this, Ed. I think there may have been some commentary on this here many months ago, when it was first being considered. This is going to be long LOL😅

I do think it is a step in the right direction, as it could possibly replicate exactly what most of us here are saying and doing day in and day out, year in and year out as we make it work even without policies or resources that really "help". Like many others here, DH already has the expert Care Coordinator serving in this role and doing a pretty darn good job. Me! Over the years, I have researched and cobbled together exactly the structure and various resources that DH needs which includes respite supports and other options for spelling me periodically. And I deliver the personal care aspect myself, 24/7, willingly and very well. We need not minimize our considerable accomplishments and contributions even though the system does. (I think this article quantifies it as all that unpaid work adds up to 18 billion hours a year. (At $15/an hour minimum wage, that equals $270 BILLION U.S. dollars in unpaid care work, so they know the value. Huge.)

Pros and Cons of the Pilot

To have to educate someone else to try and be the substitute Care Coordinator for DH instead of me, while they also juggle other cases is typically nonsensical for this system. So he would get someone part time to either learn from, ignore, or challenge what his spouse caregiver has already learned and built by the skin of my teeth — and with the support and guidance from others here in this forum who have done/are doing the same. The option they are envisioning is nice for those who don't want to do it themselves, or who can't for some reason. But the program proposed shouldn't be seen as an automatic miracle missing link just because Caregivers are neglected for so long until we burn out and throw in the towel before our LOs disease takes two.

A Wild Idea*

Here is my contribution to their pilot plan: (Will they solicit, and prioritize, such expert feedback from family caregivers, especially Spouse/Partners who are there 24/7 for years? I'd be surprised, but that would be huge!). I'm guessing not. But here is my input to their plan anyway: The support menu should start earlier in the caregiving process and include the option to respect the knowledge, expertise, capacity, and ability that is already in the home with tangible compensation. I don't want or need to hand over care to someone else — I just need to be compensated for the same services they would pay someone else. Caregivers should not be bypassed in this way.

A truly transformed system that "helps caregivers" would recognize my/our expertise, the numerous trainings I have completed to certify for his care, and my proven capability to handle his escalating needs over the last x years. And would pay me just as others are able to be paid (albeit minimum wage) rather than forcing me/us to "spend down" to below poverty levels in order to qualify for extraordinarily overpriced institutional placement which I don't want nor need anyway. DH is happy at home and I am happy too. Just forced to be on such a shoestring that honestly is the major stressor on this journey.

*The real "aha" would be if the refusal to pay spouse caregivers was eliminated. We could then choose to do as much, or as little, of the care partnership work required (at home or in MC), serving as a respected partner/lead as opposed to competition with the "experts" in the system, and we would not have to bankrupt ourselves financially, physically, or emotionally to do so. Stop victimizing and discriminating against dementia spouses. What is the problem with paying us 40 hrs/weekly at the going rate, knowing we serve the remaining 128 hours for free?

If this option were part of the pilot, the cost savings to the system and quality of life results for both PWDs and Caregivers could be demonstrated in 1-2 years I would bet, and would be stunning in terms of the positive outcomes. We know this. "They" probably do too. But what would that do to the Senior Svcs cash cow income stream for big med and big pharma? 🤔

exactly HB. Don’t see any real help here.

thank you for posting. We all need Medicare to step up and help. I pray it happens! I feel like I’m swimming upstream and going nowhere.

It seems to me that it will not be of help (unless funds are provided) for current caregivers who have had to cobble together resources they need. However, in the future it could be quite helpful to those just starting down this awful journey and short circuit their trial and error attempts at obtaining what they need to better see to their loved ones. Dementia is not going away so any help that future caregivers can receive has my vote!!

I agree - it's a start. Hopefully, something meaningful/helpful will come of it.

I have to say though, this part - "…identify some adult day care or in-home care for the patient for up to a few hours a week, to lighten the caregiver's load" - a few hours? Sigh.

It sounds like a great idea to me. Most family caregivers don't have the support we have here, and having someone 24/7 to call for coaching that can also obtain prescription orders? Sure it's not heaven on earth, and it's not replacing or replicating the family caregiver, but how many times have we had someone on these boards that needed a prescription change and the soonest they could get an appointment is in two months? And that's the folks that find this board at all! Many are still trying to explain and reason in Stage 6.

@ButterflyWings said:

“A Wild Idea*

Here is my contribution to their pilot plan: (Will they solicit, and prioritize, such expert feedback from family caregivers, especially Spouse/Partners who are there 24/7 for years? I'd be surprised, but that would be huge!). I'm guessing not. But here is my input to their plan anyway: The support menu should start earlier in the caregiving process and include the option to respect the knowledge, expertise, capacity, and ability that is already in the home with tangible compensation. I don't want or need to hand over care to someone else — I just need to be compensated for the same services they would pay someone else. Caregivers should not be bypassed in this way. 

A truly transformed system that "helps caregivers" would recognize my/our expertise, the numerous trainings I have completed to certify for his care, and my proven capability to handle his escalating needs over the last x years. And would pay me just as others are able to be paid (albeit minimum wage) rather than forcing me/us to "spend down" to below poverty levels in order to qualify for extraordinarily overpriced institutional placement which I don't want nor need anyway. DH is happy at home and I am happy too. Just forced to be on such a shoestring that honestly is the major stressor on this journey.”

Exactly! And if 40 hours per week compensation was provided to caregivers, that money could be put toward hours of respite care in the home to give us a break even for doing things in the home without having to look over our shoulders constantly and some help with the heavy lifting that comes into play in later stages. Respite care because of the minimum number of hours usually required, can be outrageously expensive, even more than institutional placement which we don’t want or need. I will probably need help getting my husband in and out of bed at some point.