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I recently moved my aging parents into a facility with a higher nursing staff ratio. Mom has late-stage PD, Dad has early Alzheimer's. They did an in-person evaluation in late October and we moved them in early November. Now, they say Mom's needs are significantly higher than they thought, and so are Dad's. Their new bill will be closer to $20,000/month, instead of the $13,500 we had been quoted. This is a financial blow.


I now think I will need to move them out of this facility very quickly and into something that will accept Medicaid, which is hard to find. They want to be together, of course. I know I signed a contract that they can raise charges based on care needs of my parents, but of course this seems wildly excessive. Anyone have any advice?

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I would look at Adult Family Homes that could help both of them, perhaps giving them a shared room or separating them if needed. Sadly we see it all in late stage of any disease. Sometimes married people forget their spouse of 70 years.. We have over 3,000 AFH in my state. Often privately owned by a Nurse, CNA, Med Tech, etc they tend to have much lower prices. Also most states have an AFH council or support group, they will often have meetings in each county. Depending on the state they might have a registry for every AFH per zip code.

They tend to get owned by people from other cultures who love elder care. Nothing against our culture as the wealthiest country in the history of mankind, but some people believe we devalue caregiving in general. I find it upsetting when I hear of this kind of capitalism applied to the elderly.

I work in hospice so have visited every community, afh, hospital, home care, doctor's office, geriatric clubs, etc. in my county. I have about 1200 AFH in my territory alone. My job involves 8-10 cold door knocks per day as part of "outreach". I try to explain that I act like some type of odd religious fanatic but with no bible, and I have found many underserved referrals this way.

I will say this about AFH: No one wants to lose their residents but especially not an AFH as they have room for maybe 4 to 8 residents per house. They don't increase prices like that as they will lose to another AFH.

I educate everyone on how to partner up with hospice and palliative much earlier than would expected as insurance would cover so many things that have gotten so expensive: pullups, wipes, music therapy, social worker, medical equipment, etc. Some of the owners own 8 or 10 AFH's. Most of the savvy owners try to have one resident on palliative/hospice with us at a time so they may access these benefits for their residents! We provide a bath aide, family supports, doctors, etc...

In memory care with degenerative disease, hospice will inevitably become the final benefit these people will access.. People ask me how I deal with grief, I find it more tragic when the party did not get to have a better end of life experience based on comforts due to this level of profit taking or interference from the business world.

Several AFH I work with specializes in late stage dementia, we always have a few residents or more out of 5 on services with us. No one that goes into these places gets miraculously better. Hospice all about comfort and accessing benefits while we still may, and known people on and off hospice for years....

Good luck. I would try to find a good fit near your residence. That way you may visit as much as you wish. I live in a very expensive area where a married couple in one of those big corporate places, both in memory care, paying about $18,000 per month. It went on the news a few months ago, that the husband stabbed the wife to death in MEMORY CARE ON THEIR WATCH.

Why did these people not get put on hospice? We could have helped out with that for months. But every time I cold call that place to try to educate them on our services, they don't want to refer to hospice as that means they might lose some control over the pocketbook of their residents. The poor gentleman's family had to post over a million in bail.
I know of another "premier" memory care place that charges $2500 more per month private pay if the resident accesses their medicare benefit by going on hospice... Hospice covers so many services through medicare, I find that awful that some business executive just had to stick their finger in it with a monthly increased fee for someone trying to access services.
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Reply to PennyAmes
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Get hold of the Ombudsman office for your state...google LTCOP and your state name.

I'm assuming they gave you an itemized list of how the charges add up. Do you agree with it?

They could have done this to you because they really don't want to take care of your Mom and Dad.

Either way, I think you should start looking for another place.....
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Reply to ChoppedLiver
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It sounds like they went from AL to MC. It's understandable that amount went up for the service that MC provides. It's quite possible that the initial evaluation wasn't thorough enough,it wasn't until they got to know them that they discovered the needed attention. They should've mentioned the cost of additional care if AL didn't work out. The facility is well aware of how fast the elderly can decline. I think you're stuck until you can find another place which is really bad for your parents to have to be jerked around at their age. I agree with the other person on the forum to get the ITEMIZED BILL and look it over. I'm in MN and my mothers bill was $4,200 for AL and $6,310 for MC a little over a year ago. In AL, if she didn't go to the dining room, they would charge $5 per meal for delivery. I can't see the MC for your parents being so much when they share the same room. I'd speak to the facility and ask them why you weren't informed about the higher costs that could occur BEFORE you moved your parents there? Maybe they'll have some remorse and work something out with you? This is a sad situation, I feel for all of you!
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Reply to JuliaH
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If you are in California, please look up Senate Bill 1406 (Allen) which was passed into law and became effective January 1, 2025. In my experience, a lot of these facilities practice "bait & switch." They lure folks in with a "reasonable" fee. Then they reassess and say that a higher level of care is needed. Some cases, a higher level is needed, but in others (in my opinion) the facilities are simply doing "fund raising" by raising the level of care on vulnerable folks. If you check out SB 1406 you will see that you can refuse these add ons, thereby keeping the care level at a lower rate. Remember, many, if not most, of these facilities are run by Corporations or LLC's whose prime goal is to make money. Care is secondary.
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Reply to BetZee
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Wow....that is a terrible financial blow. You may need to find a Certified Medi-Cal planner or Elder lawyer for advice about your next step.
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Reply to Dawn88
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The contract should list the specific prices for specific items of care. Have you checked the list to see whether it is accurate? If one or both of them had an increased need for services, it could add up. For example, if one of them became incontinent since moving in, or could shower on their own but now needs help, or had a decline in mobility and now needs physical therapy, or was managing their own medications but now can't. This should all be spelled out.
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Reply to MG8522
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Are you saying that they cannot stay because they are out of money?
Or are you saying you won't pay because price is exorbitant?
Because they won't get Medicaid until their assets are gone, save one car and one home.
And Medicaid will do recovery or "clawback" on that home at their deaths.

In the bay area, California, for Memory Care which you are describing in terms of needs, you could well get up to 20,000 for one person. So to me your prices, if this is full on memory care, are still not bad, and I can't imagine they were half that amount.

You surely are free to explore what else is out there. And if there are still assets then some place like A Place For Mom will help you do that exploration. Once funds are gone, yes, it would be nursing home. As they are married, they well could be roommates.

Don't know what's available in your area, but you might explore 6 pack room and board type establishments. Often run by families, they are more homelike, and they could share a room which would in their case be a real savings.

Good luck. Hope you'll update us.
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Reply to AlvaDeer
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