Looking for help navigating care for an aging parent

May 30, 2022 11:03 AM

My father took a fall this weekend and it seems this is ushering in a new phase: he's not safe returning to his apartment where he lives alone, and will probably need a quality skilled nursing facility. We kids can't really afford an indefinite health care bill of that size, and we're trying to figure it out. Snowflakes inside.

The Health Situation
Dementia is setting in somewhat rapidly, on top of COPD and a cigarette addiction (he's currently on a nicotine patch, which we hope to be a permanent situation). He's about 80 and physically quite frail--this is his third fall in the last few years, and the worst. After an unknown number of hours (days?) on the ground, he was taken to the hospital in a pretty . . . undignified state . . . and is now at a skilled rehab facility awaiting therapy to get him back to whatever his new equilibrium is. No stroke, no heart attack, no new diagnoses as a result of this hospitalization, but he's quite diminished. As of today (nine days in) he can't even stand on his own.

The Health Care Situation
The relevant particulars I can think of are:

1. He lives in CA.

2. He is a Kaiser Permanente member (this is an integrated care model), but increasingly unattached to medical care by his choice/stubborness.

3. We fully anticipate Kaiser to discharge him from rehab within two or three weeks, probably far too soon and before we can figure out a long-term solution with him/for him.

4. One of us siblings lives in the same town as him. Living with her is not an option, but she coordinates a lot of the logistics of his care and his life.

5. He makes approximately $2,200 per month (roughly $26,000 annually) in pension and social security, and my understanding is that this is just over the threshold to qualify him for Medi-Cal (Medicaid). He has no land, car, or other assets.

Some Immediate Questions
The immediate questions we've been dealing with are:

1. How do we qualify him for Medi-Cal to cover medium-term and/or long-term care, if that's where this is going?

2. Does anyone have experience working with the CA Health Insurance Counseling and Advocacy Program (HICAP) on matters like this?

3. What are the pros and cons of switching from Kaiser to Medicare for his health insurance, for a person in his situation? (We see only pros, since his day-to-day is moving toward a situation where his situation is managed almost entirely outside Kaiser anyway.)

4. What do we need to be thinking about in the short term (three weeks) while he's in skilled rehab, with a fork in the road in front of us: back to his apartment or into skilled nursing.

5. What are the most effective ways for us to argue with Kaiser to buy him more time in the skilled rehab facility, if he needs it for therapy and/or if we need it for logistics?

Any advice or thoughts are much appreciated. I don't know anything of this world, so I'm sure I left out a lot of important details, please let me know.

posted by kensington314 to Health & Fitness (16 answers total)

When we were dealing with something similar (my mother-in-law, in CA, in Tulare County), we hired an "eldercare advisor" in her city. This person knew all the answers to your questions, and even more importantly, knew all the tricks and facilities *in that city* so all of her advice was incredibly specific. It made the final year or two of my mother-in-law's life basically doable for our family. However much we paid her (at this point I've forgotten how much), we saved literally thousands of dollars by following her advice.
posted by BlahLaLa at 11:18 AM on May 30, 2022 [13 favorites]

> my understanding is that this is just over the threshold to qualify him for Medi-Cal (Medicaid)

He could still qualify based on age, regardless of income. See this page on who qualifies from the DHCS (includes links on how to apply at bottom--contact your county or go to Covered CA). Just from a quick search: this page has some info geared towards seniors and nursing home benefits.

Sidenote: IIRC, you can still select Kaiser as your provider on Medi-Cal if your county offers it as an option.

[usual disclaimer--not a healthcare expert, etc.]
posted by Sockin'inthefreeworld at 11:37 AM on May 30, 2022

The rehab facility may have a social worker on staff whose job includes helping to place "graduating" patients at facilities appropriate to their health, financial and insurance situation, setting up visiting nurses, etc. It's worth asking because sometimes their titles imply other duties, e.g., for patients already in residence. When my siblings and I were in your shoes, these people saved us a lot of time by eliminating places that were already full or were otherwise ill-suited to my mother's needs. The social worker also helped facilitate some of the more difficult conversations about the future with our stubborn mother.
posted by carmicha at 11:39 AM on May 30, 2022 [13 favorites]

Came to the end of a long, similar road with my dad last year in July. Highly recommend talking to the social worker at the rehab facility-- their entire job is to help people figure these things out, with the local resources available.

I recommend also getting any paperwork in place with Kaiser to allow you to talk to your dad's doctors about his care. It's a medical power of attorney, and there are different levels. You might think about financial power of attorney as well, and discuss with your dad his thoughts on that.

It's good that you're trying to get ahead of this. Hugs from afar, from a stranger on the internet.
posted by Temeraria at 12:29 PM on May 30, 2022 [6 favorites]

Just some quick thoughts having navigated this with my parents: Definitely meet with the social worker at the rehab immediately, they probably will not be helpful but may have some suggestions. HICAP is great but will not be that helpful - they are focused on getting you the most reasonable Medicare plan - none of which will pay for what you need. Having Kaiser Medicare does not cost more than regular Medicare so may be beneficial to keep it. Over all, living the remainder of one's days in a nursing home is not a good outcome. Even the best ones are rather grim places and promote infections, depression, boredom, wounds, and other poor outcomes. If at all possible, you should seek a memory care facility. These are very expensive and not covered by any public (or most private) insurance plans, unfortunately.
posted by latkes at 12:43 PM on May 30, 2022

Yes please get medical power of attorney (and financial if he's open to it) now. Just use an online template for California. NOLO Press is reliable. Having this will be very necessary later on. I also recommend with Kaiser asking him if you can communicate directly with his doctors via the MyChart function. This was very helpful to me when supporting my parents.
posted by latkes at 12:47 PM on May 30, 2022 [4 favorites]

I would say get medical AND financial powers of attorney in place. If you never need them, that'll be lovely. But as people grow to need more help, they often become combative about this kind of stuff--not to mention that, heaven forfend, lots of people suffer cognitive problems as they get older, which only makes it harder to arrange legal stuff. If you can still have a rational, amicable conversation about it, by all means take the opportunity to do so.
posted by Sing Or Swim at 12:53 PM on May 30, 2022 [5 favorites]

My parents are enrolled in a PACE plan, which covers the entire cost of their assisted-living facility as well as all medical care expenses. I am no expert but it looks like they have PACE plans in California, and could be a good option. https://www.medicare.gov/your-medicare-costs/get-help-paying-costs/pace This is really hard stuff; wishing the best for you and your family.
posted by prewar lemonade at 1:02 PM on May 30, 2022 [3 favorites]

Having gone through this twice I would tell you to be wary of the out of pocket memory care option. You’ll be pushed in that direction by reps from those facilities for obviou$ rea$on$, but every single one I talked to (in MA) had rules in place that didn’t make a ton of sense to me as it pertained to my dementia-stricken dad, and if you ask enough questions they will admit to you that eventually he will have to go into a skilled nursing facility anyway.

You’ll get some judgement from people IRL and on the internet (as you can see) for putting your loved one in a nursing home but you can’t worry about it. Nursing homes are NOT all created equal and some are a lot better than others. This is the time to go on Facebook and ask what others have done and where they recommend. Any good place will have a waitlist, but if you get him on a few lists while he’s in rehab it’ll work out ok. We agonized over putting my dad in a nursing home but he’s doing really great, eating well, charming the staff, and things are so much better. Hang in there, I know how much this sucks.
posted by cakelite at 1:11 PM on May 30, 2022 [5 favorites]

Kaiser also has social workers and they will at least have lists of resources for seniors that they can share with you. They also usually have worked with at least some of the agencies and may be able to offer opinions.
posted by mogget at 1:51 PM on May 30, 2022

I've got a few tips, based on taking over the care of my demented mother in 2014:
1. Yes, definitely, hire an eldercare consultant. They are worth every penny.
2. Absolutely get powers of attorney, medical and financial, ASAP.
3. Before you decide on a facility, make sure you know what you're getting into.

Eldercare is a racket. There are so very many ways they can try to scam you, and once they have your dad in residence, they can use him as a hostage - as in "Do what we say or we'll kick him out." "Get over here and handle his behavior or we'll send him to the psych ward in an ambulance." Some assisted living places will tell you that they are experts in caring for dementia patients, but they are not. If his behavior is the least bit odd, they can demand that you pay for 24-hour eldersitters, at $25/hr or more. The first thing to do if he suddenly gets very confused is to check for a UTI.
Take a witness to any document signing. Make sure you understand every clause in the contract. Do not accept "Oh that's just boilerplate/legalese, it doesn't really mean what it says." Bullshit. Make them include everything they promise you IN WRITING. Strike out anything you don't agree with; for example, there might be a clause that says your dad has no renter's rights for his assisted living apartment.
I refused to pay Mom's first facility for months because they kept sending me invoices for the rent that were not the amount I agreed to pay, and then they had the audacity to threaten to put Mom on the curb if I did not pay up. My eldercare consultant saved the day. (This was at Brookdale Senior Living. NOT RECOMMENDED.)
There are several options you might want to consider: assisted living, a group home, or a memory ward. We tried all three. Surprisingly, the one Mom liked best was the locked memory ward in a nursing home. They took excellent care of her, and the excellent care continued after I ran out of her money and assets and she went on Medicaid. She died last year at 102.
As long as he's still lucid, you need to find out about all of his assets and liabilities. My mom kept joining AARP over and over, but AFAIK they never refunded the money. Her supplemental insurance was canceled when she forgot to pay, and they refused to reinstate it even when I offered to pay all the back premiums. You will need the POA to deal with banks and credit card issuers on his behalf, even if all you want to do is make a payment.
Here's a fun one: Mom used to hide her purse for fear of it being stolen. Then she couldn't find her purse, so she closed her checking account, then Social Security could no longer deposit her payments, and Medicare no longer received her monthly premiums, so she was kicked off Medicare. I had to drag her along to the SS office to get all this straightened out. It took several visits.
A word of warning: Social Security freaks out when they hear the word "dementia," because they don't want the liability of some poor demented old person signing a charlatan up to be their representative. Do not say "dementia"!

I hope this helps; it's what I wish I'd known. Good luck.
posted by caryatid at 2:04 PM on May 30, 2022 [11 favorites]

I only quickly skimmed this thread, so maybe someone else has mentioned this before. There are non-profit agencies that will help you (at no charge) with issues related to elder care. Or, at least, there's one such agency in my town. When my father needed go to into a nursing home, I spoke on the phone with someone who was very patient and helpful. (This is in stark contrast to two social workers at the hospital who gave me wrong information and were worse than useless). See if there is a comparable agency where you live.
posted by alex1965 at 3:39 PM on May 30, 2022

Sorry you’re going through this, but looks like you are off to a good start! First and foremost, Medi-Cal asset limits are changing in July, so he should qualify then. CANHR is an excellent resource for understanding how to pay for long term care as well as for understanding what to look out for when procuring care.

Medi-Cal will pay for some in home care (In Home Supportive Services/IHSS) but not 24 hour care at home. Some people do IHSS and then supplement with private pay. Most assisted living facilities will not take Medi-Cal, but many skilled nursing facilities will.

PACE programs are great but he almost definitely can’t belong to one and still belong to Kaiser (because PACE is an all-inclusive plan that includes his doctors). If you’re looking to leave Kaiser, though, they’re a great one stop shop. He *can* attend another adult day program even if it’s not PACE. An adult day health program (must provide nursing care and some other special requirements) can be payed for by Medi-Cal. A social adult day care (no nursing, just activities) will be private pay

HICAP is focused on Medicare so won’t be your best contact for help with Medi-Cal. There are Medi-Cal advisors who can help. Never, ever pay for help with Medicare or Medi-Cal. HICAP can help you understand different options for managed care plans within Medicare, or if he becomes dual Medicare/Medi-Cal eligible.

If you want to MeMail your county, I can give you some more specific suggestions for agencies that could help, but CANHR is a good place to start.
posted by assenav at 3:55 PM on May 30, 2022 [3 favorites]

Depending on your father's level of functioning, you might want to be aware of what are called "board and care" homes in California. These are regular neighborhood houses that have been converted to elder care - typically with a license for six (occasionally twelve) residents. Quality is all over the map but we found one that that could provide pretty extensive assistance with the ADL (activities of daily living) including diapers and medication. They are much more hands on than assisted living but since they don't provide direct nursing care (you get a visiting nurse if it is needed) they are far cheaper than a nursing home. Ours can handle mild dementia but not to the level of a locked ward. For us, it was the right intermediate level of care.

Also, before you make a decision, it is a good idea to check with your state licensing board to see how many complaints have been filed against the facility. There will always be some, but when I was looking, it was clear that were less than a dozen places near us that had ten or fewer citations and most of the rest had twenty or more. So it was clear which were the better ones on that basic standard. Here is the search page for the California department.
posted by metahawk at 5:30 PM on May 30, 2022 [1 favorite]

Sorry you're going through this. We've dealt with extraordinarily similar circumstances with my Mother over the last year or so, so I feel your pain.

I can't advise you on anything to do with the US health care system, but want to share some of our experiences more generally. A couple of thoughts are below, though.

We found the hospital (where she had been admitted after a series of falls) extremely helpful both in terms of making sure she was able to stay there until we organised a more permanent solution (they actually insisted that they would not discharge her if she was going to be returning home) and in dealing with her insistence that she was fine to return home (she would not listen to us, but respected the authority of the hospital and social worker staff). Talk to the relevant staff member and ask their advice/assistance.

Don't let naysayers sway you from 'nursing homes'. Despite Mum's insistence that she would never live in one and would rather die (lots of bitter statements about my sister and I 'trying to lock her away in a home'), she has absolutely blossomed (relatively, given her various conditions) and is both happier and healthier by far than she was at home where she was alone most of the time. She is not in a dementia care unit (yet), but the home is secure enough that she can't wander off but can roam around inside and out without getting into too much trouble (this was important to her). There are certainly options such as assisted living facilities, so explore the options and work out what is best not just now but for the foreseeable future (eg does the facility have dementia care available if it's needed later or would you have to go through the whole process again and disrupt his life even more). Make sure you personally visit any place you are considering - the fancy brochures and web sites are often misleading!

I hope this all goes as well as possible for you and your Father.
posted by dg at 6:06 PM on May 30, 2022

Check for the UTI, those really effect the awareness of the elderly. I have fallen a few times in the last 5 years. I have just figured out the cause. I like living alone, I won't have it any other way. He may be terribly frail. Medicare does not cover long term care, and will cover rehab, as long as there is documented improvement. The state will ultimately take his property to cover long term care costs.
posted by Oyéah at 9:11 PM on May 30, 2022