Just Checking In - Its been a while but doing MUCH Better

FTDCaregiver1

Hi All - Just checking in, its been almost a year since I've visited this site, great help and support. DW is in her 7th year with EO FTD, she'll be 61 in a few days. Much has happened since I placed her in MC in late December/2022. Short story is I eventually pulled her out this past August and now care for her at home after multiple MC placements, involuntary discharges due to yelling, pacing, shadowing, couple of Mental Health stays to assess and try new medications (which failed badly) .... paradoxical reactions to benzos, pregabalin-induced Parkinson's, which I had to catch, and they missed at the facility! Since coming out of the MC system and 2 more failed MH stays, DW's physical health has improved, and her Parkinson's symptoms pretty much all abated after several months. I now have support to care for her at home allowing me to step back and live again including Medicare funded; in-home day care, tele med visits with a good psychiatrist to monitor adjust medications and supplies, supplements and medications. Since her return, I've taken up metal detecting again, yoga and meeting new friends. Upon reflection, though this past year was hell, we both are in a much better place than we've been in these past years. Always looking forward and best regards.

SSHarkey

I wasn’t following the site when you were last on, but from the sound of your post, it appears you’ve found excellent solutions to your situation! What a relief this must be for you! And for her as well!

RickM

Wow! Good for you. Looks like you figured out how to access the support you and your spouse needed. I can imagine what you have endured. So sorry. Best wishes going forward.

Rick

M1

I think you mean Medicaid funded? Not trying to be picky but a lot of folks don't understand the difference. PACE programs are Medicaid..... At any rate I'm glad you have a system in place that is working for now.

Denise1847

https://alzconnected.org/discussion/68575/just-checking-in-its-been-a-while-but-doing-much-better

I am so glad that things are going well for you. It sounds like you have worked very hard to put all things in place. Stay well and live strong.

FTDCaregiver1

https://alzconnected.org/discussion/comment/202551#Comment_202551

• Let's do get picky. Here's some info on the PACE program. I pulled this info to clarify how PACE programs leverage a variety of funding sources to promote services... "The capitation payments received by PACE programs come from four main funding sources: Medicare Parts A & B
• Medicare Part D: This component covers prescription drug costs.
• Medicaid: PACE programs receive funding from Medicaid to support eligible participants.
• Private Pay (Uncommon): Some participants may pay privately for PACE services, although this is less common.

• These funding sources are combined to create an integrated revenue stream that meets all participant care needs1.

Like you, I originally thought Medicaid was the sole funding brokered by over approximately 31 states which operate PACE programs. As a condition of enrollment, my local PACE program now manages DW care. Upon enrollment, it was under Medicaid and within 6 months, PACE coordinated with a DHS (State Social Worker assigned to DW) to shift enrolling DW under Medicare, she now has a Medicare card. Since I don't pay the bills I don't know what pot of money pays for what, don't care. But the big picture is that PACE programs coordinate a variety of leveraged sources, including Medicare to pay for services.

M1

thanks for the additional info; there is only a very small PACE pilot program in our state. I think the important thing to be aware of for most people is that it IS an estate recovery program. If you participate--and I agree it is a good program--you may eventually be subject to estate recovery costs (this is the Medicaid piece) for the care. States vary in the degree to which they pursue estate recovery. So you do essentially have to meet Medicaid financial requirements to be entered--or else be charged an extra premium for the services. Very complicated, for sure.

But like I said, I'm glad it's working for you and your DW. FTD is so very difficult.

FTDCaregiver1

https://alzconnected.org/discussion/comment/202568#Comment_202568

Yes, think PACE really needs its own discussion thread as its very nuanced and complex by state and even within each PACE program. On the issue of asset recovery, keep close contact with any assigned social worker responsible for asset determination, including look back periods like I did. Secondly, employ good legal work to protect assets and your legal team works directly with that social worker, can't stress that enough. Won't get into my details, but at the time of DW enrollment, according to my state-assigned social worker my assets were within exemption requirements, so i pay nothing, if I die, my estate, including home and personal assets (up to the personal exemption level) my attorney worked out with DHS is exempt. As of today, I pay nothing for the services we get. Negotiating services with my PACE program to allow in-home day care and other services I receive at home was a long journey and met with much initial resistance but knowing PACE funding streams which allow for it, working closely with my PACE social worker to advocate for it and putting in a lot of personal skin-in-the-game over many months in MC facilities and MH stays paid off. After 7 months of failed MCs, it was my PACE program, including my assigned PACE social worker that determined my DW needed one-on-one care currently not provided in a MC Level of Care system. In the end, as I was told, through PACE, though they agreed that home was the best place and aligned with their program goals of age-in-place, competing interest like cost came into play. Well, it was demonstrated it was cheaper for them to agree with me, have her live at home, provide wrap around services; day care, supplements, medications, supplies, tele med services, than to pay to remain in the MC system and according to my PACE social worker, who went to bat for me, my care, including work in the MC facilities helped as they knew I'd do a good job, if not better. Whew...like I said, it's a nuanced program for sure but I believe, like anything in life, hard work can pay off and building advocacy requires a team and good relationships.

Vitruvius

Very informative. Thank you.

Dio

Glad things worked out. There are too many horror stories.