No treatment options (thanks, insurance & MediCAL /s)
So for months (since February 3, 2026) DW (61) has been without treatment due to losing our COBRA. It took Medi-cal five months to get us to UCLA's Rubin (Rudin?) Center for Alz & another month to get an appt with the Doc in the end of December. Now that she is going to receive SSDI in September, we're dropped from Medi-cal us in September (just found out today—such ^ great news ^ right when I had a path forward). We can't afford the Obamacare options so we'll go uninsured. She'll go untreated. Not even monitored. No one is hiring a 59 year old guy who was a SAHD for 20+ years… been trying for the last 3 years as AI destroyed my business, even before I lost it completely due to caregiving. I can't even feel. I'm numb. Again. I almost go to where I could feel, and try to think of the inevitable conclusion to this horrid disease. I just can't… w.t.a.h.
The utter cruelty in all of this is devastating right now.
Comments
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If she is on SSDI would that qualify her for Medicare based on disablity. .
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@Dusty217 It is 24 months from beginning SSDI to becoming eligible for Medicare if under the age of 65.
@AlekoW why does your DW no longer qualify for Medi-cal on SSDI? Medi-cal is the Cali Medicaid equivalent, correct?
I am so sorry for this unexpected and unwelcome turn of events for you and your DW.
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The County told us unless SSDI/SSA indicate/details that n the notice of benefits letter, which it does not, she will not be eligible.
I feel like I'd need an atty to navigate this as everyone, case workers & individuals alike hold different versions of how things work. I can only operate on the official versions from case workers and specific program administrators communicate to me.
However, I'm certainly going to ask again.3 -
Money well spent to find a good CELA attorney specializing in Medi Cal. We found a PACE program that is all inclusive care for a person staying at home. My DW at 56 with EOAD qualified through medi cal with me on spousal impoverishment. Not sure if you need to be on both Medicare and medi cal. My DW is on both. We did have to wait the 2 years though for Medicare to kick in. I know it sucks.
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I know California is its own unique wonderland but here in Colorado I had something similar as we lost our COBRA, DW still had 2 years after qualifying for SSDI before she could qualify for Medicare and we were too "wealthy" for Medicaid - so no insurance. But by talking directly with the hospital's finance department in person I was able to apply for aid directly through our primary health network in our area. They have covered both DW and myself for the entire year. All Dr visits and specialists as long as part of their network. Hope you can find something similar in your area. It has been a God blessing for sure.
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So @AlekoW I absolutely understand your frustration. I agree with blacksparky in that you might have to hire an attorney. The bad part is that you have triggered a rant. I don't mean to highjack your post but W.T.A.H.
I will keep it short (or maybe not). My DW and I have over 110 years of work, paying taxes and paying insurance premiums. We have been blessed with good health. The largest insurance claim was a hysterectomy about 30 years ago. Now that we need some assistance for DW the responses we get are Bizarre. Yes, we are still paying taxes and Insurance premiums. Sure, help is available. The only thing is, first you have to sell and use the money from everything you own. Yes, you can keep the house, Oh, but only if you re-buy half of it that you have already paid for. Yes, you can keep vehicles, Oh, but only one and yes, you have to sell the Motorcycles from 1996 and 1974 (scrap) and the yard truck. Oh and the utility trailer from 2000 has to be sold and used for expenses. Oh, and your 401Ks will have to be deducted (the ones we were encouraged to participate in for our Future retirement and participated in since 1980? Yes those.) Oh, and any pension benefits will have to be deducted. Oh, also any bank accounts. After that some assistance is available. We will send you a pittance. Oh BTW, the pittance will go to MCF/Service Provider System, and you will be liable for incidentals and copays. Oh, and DWs SS that she paid into will go to the Facility/Service Provider System. After all that Sure help is available, if it's filed in time, in triplicate, to the proper Office, to the proper clerk.
I believe in paying my share. But do I have to be stripped naked and put in the street? Oh BTW, if you have clothes, they will have to be deducted. (not really, I hope).
You are correct, this is cruel. I am so sorry you have gotten stuck in this quagmire. This system doesn't work well and it's not just Medi-Cal. I am going to steal another's Discussion title "IS THIS THE BEST WE CAN DO?"
Sorry for the rant. Please don't hold it against me.
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The only good thing I can say about California’s Medi Cal is that they have pretty good asset limits. Person on Medi Cal can keep 130K and spouse can keep 65K for a total of 195K combined. I hear a lot of states asset limit is 2K.
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I'm have a contact number to call at UCLA to try for this same thing. Here's hopin'!
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OMG y'all, this is amazingly helpful. 😃 I'm gonna try everything suggested. This group rules.
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They were telling me $29K annual & exceeding the IRT monthly limit. Sometimes I wonder if it's our County… 🤦♂️ I'm figuring out the appeal process as well. Ugh.
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Gonna call our SSDI atty for a referral to a CELA atty. What is PACE?
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Awkwardly? At least we're not alone… I ranted my tuchus off in the shower. With music blaring so she couldn't hear me.
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While I sympathize with your situation, what treatment do you feel your LO is being robbed of? There is nothing out there that's even worth trying. Certainly investigate the suggestions above, but if you think this is your barrier to curing or delaying the progression, or that some wizard is going to diagnose them with a curable and treatable disease of the brain, I think you are not accepting of the situation you're in. Work on the insurance situation only with the hope of you both being able to get basic health care.
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I wonder how a divorce on paper would work when it comes to medicaid etc. Keeping the money we saved for decades doing everything 'right'.
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blob:https://alzconnected.org/5ddb3703-0fc9-44d6-82fe-f49dc87c3d87
This was exactly the time period I had to wait when awarded SSDI at age 50.
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PACE = Program of All-Inclusive Care for the Elderly
It’s a healthcare program for older adults who qualify for nursing-home-level care but can continue living safely in their community. Minimum age is 55. Not every county has a program though. We live in San Joaquin county and they have services there.
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I know that much of this stuff is specific to state laws. We are in Texas. DW became eligible for medicare 24 months following the "date of disability" that was acknowledged by SSA on our application. This date is generally different than the date the SSDI application is approved. In our case, DW was eligible for medicare two months following the approval of her application. We also received 20 months of SSDI back pay.
Following DW diagnosis, I tried doing SSDI application myself and it was ignored. About 1 year later I retained an SSDI attorney and that got things going and finally approved. The attorney fees were taken from the back pay and are capped by law.
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so sorry you are going through this. Sadly even with insurance, doctors aren’t much help other than maybe a diagnosis. There are trials for early onset but they have major side effects and may only slow progression by a few months at most. The only doctor that helped my DH was a Geriatric Psychiatrist who managed his anti anxiety medications. His PCP & Neurologist were zero help. I got more help here in this wonderful group.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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