Advice needed: Getting an elderly parent set up with a home health aide
Hello Tildes,
My partner and I are at the point where we need to get more care for my dad and I could use some advice from people who have been down this road. He's in his early nineties and still living in his home, and the family has been lucky in many respects. Dad still has good cognitive function, he has excellent health care through his military retirement (USA: Tricare for Life). My brother is living in the family home, so there's someone in the house overnight in case there's a fall or other serious issue.
Last year we got Dad set up with a medical alert service, so he's only one button press away from talking to a helper if he's in crisis. My partner and I are down visiting him about once a week to help with chores and hang out. Same with my other brother. We've been holding things together.
But Dad's having difficulty with normal life stuff (walking, bathing, eating) and he's transitioning into a bedbound state, losing weight and eating very little. He seems fairly comfortable, just extremely tired and increasingly frail.
To be clear, I'm not asking for medical advice. Where I'm stuck is: How do we initiate and navigate the process of getting him a home health aide? His medical team was entirely unhelpful when we asked about case management. They say "if he's struggling, bring him to the ER" but he absolutely does not want to go to the ER, and we're loathe to force him at his age unless he's in crisis. Also, the ER is full of people with the flu right now.
We've reached the "we can't put this off any longer" moment, I think. Any advice on getting the ball rolling would be appreciated. Do we just randomly call up home health agencies? How do we figure out what his insurance will and won't cover?
Thanks so much.
GP
On your side of things, start asking friends what services they’ve used. Post in local FB or NextDoor groups, and there specifically ask if any are covered by Tricare. Make a spreadsheet listing companies, pros, cons, and costs to compare. When you think you’ve found some that would work, get them over for a visit, and get your dad involved to see if he gravitates toward a particular company.
Unfortunately my grandparents were very stubborn/prideful about things, so the approach was a bit more behind closed doors and later than it should’ve been.
My mom's been gone for 25 years. With regard to the alert service, it took us a few weeks to talk him into it, but he's been okay with it. He has a certain amount of pride around not wanting help (understandable - I'd feel the same way), but he's persuadable, especially if we can keep him in his home.
Asking around on FB/ND is a good idea. I don't have any accounts on those sites but one of my sibs does.
Remember you're almost always going to get more negative reviews than positive ones.
You can absolutely call agencies and ask the same questions but first I would reach out to your state's department on aging (or equivalent) or local senior center (or Area Agency on Aging or equivalent) for more resources. They may be able to assist navigating Tricare vs any secondary coverage. I'm going to link Illinois's info just as an example.
However it does not sound like Tricare will cover a personal assistant - someone who's just day to day tasks - but might cover home health care - OT or PT, nursing, etc. So you may be looking at paying out of pocket vs having that covered. (Then again there can be medical reasons he's not eating such as difficulty swallowing which would be PT/OT) Either way a doctor will need to start that process. Case management in the medical field includes handling this sort of thing but also sometimes... Idk I do non medical case management and I am consistently disappointed by nurse case managers.
A lot of figuring out what is covered will depend on his medical need vs his "Activities of Daily Living" needs. For access to state programs there is typically an asset test (home and furniture are exempt) for example. If he's below that asset level a bunch of resources should become available, including both in-home and day programs.
If he (or you all as family) can afford the OOP costs it will be relatively easy in that you're paying for a service. The rest gets more complicated. The state agencies should be able to help some in getting you guidance.
My partner's assistant comes through a different state program and I used to work for Illinois's agency that handles Medicaid waivers (providing in home care) in grad school so I've got a bunch of info but it's pretty state specific.
The way you've laid this out is truly helpful. Thank you! I'll look for the agency in my state (WA) and see what navigation assistance they can offer. Based on what you wrote, it sounds like his doctor's assessment of what's deemed healthcare (PT/OT/Nursing) vs daily tasks will determine what help is available through his insurance, and then we can try to figure out how to cover any out of pocket costs remaining.
Okay! I feel slightly less overwhelmed now. :)
I'm glad this helped!
Aging & Disability Resource Centers (ADRCs) | DSHS
Here's the Washington state equivalent!
I know you were talking about the ER visit, it is true that this is a method of accessing referrals but it isn't the only one. If his PCP isn't up to the referral task and you aren't able to get some more guidance from the ADRCs then i would probably suggest it if you continue to be worried about his overall health/safety.
Other things that can help are prepared meals - like heat and eat, meal replacement shakes (not diet ones, you want more calories not less), and just food he likes. At this point it probably does not matter if all he eats is hostess cakes as long as he's eating.
Happy to try to find more info out if it's helpful
Perfect. Thanks for the link. We'll get started on this and since you were kind enough to offer, I may ping you later if I get stuck finding the right information. :)
Absolutely happy to help!
You had mentioned a medical team, but does your dad have a primary care provider? That's the person I would try to reach first for insight/getting the process started.
I have a home health service visiting for my grandmother, to help her out with some physical therapy and to spare having to travel for monitoring, and we got everything set up through her PCP. I'm basically in your brother's position where I'm at, I was able to talk with them myself and get things set up. PCP already had an established relationship, so it didn't take much to get done. But, we are rural (there's just the one agency) and she's on medicare - my assumption is that a provider working with the elderly would have some idea on how to get it done for someone with Tricare.
Thanks for the reply. His PCP was the one who said (via message) "bring him to the ER for assessment" and while he's been resisting that step, it may be that we need to go that route. You're right though - we should try to get another PCP appointment and go through that channel.
I've been looking over the coverage documentation all morning and it seems any services we get for him at home will need to be pre-authorized by his doctor.
Requiring authorization jives with my own experience, but I wasn't made to have her do a new assessment, for what it's worth. If your dad's doctor ends up insisting on visiting the ER I think they should explain what the deal is with that. The risks are real enough that I'd want to be certain doing that is actually necessary.
With us it was surprisingly simple. Talked to the provider, they did authorization/some paperwork, I got a call a few days later, good to go. Could be we got helped out in ways I don't know (my grandmother's provider is truly excellent) but I didn't get the impression we were any different from what's typical around here.
When my Mom was nearing the end, my Dad needed to get an aid. My Mom resisted until my Dad reframed it from her needing help to him needing help helping her.
He rather exasperated said "look, I need help! The aid is helping me help you!". After that, she thought for a moment and we like "okay, I can see that."
That's a good way to put it. He might be more amenable if he sees it helping the whole family, not just him. Thanks!
Up here in Canada, his primary care physician would have set him up with a social worker / case worker who will set up home visits by occupation therapists who can refer for home modifications and bafh tub chairs and toilet seats etc.
The closest thing youre asking for is probably home care team. The home care case manager will interview, and based on needs assign someone to come anywhere from once a week to four times a day, to manage medication, meal heat up, garbage, bathing, toe nails, etc. Not house work though, and very expensive if one has savings.
I know youre in the states but there might be something similar, start with social worker and or ask assisted living facilities for referrals.
This is how it happens in the states too, for my grandma there was a point of intervention when she had a fall and ended up in the hospital.
At that point her primary care set us up with a social worker and they helped us set up hospice services, which included a home care aid.
They told us there was three levels of services that are covered under Medicare, one for rehab, two for maintain, and then hospice. I’m guessing OP would need the ‘maintain’ services, we never had those though so I’m not sure what it includes. Hospice includes a home care aid 3x a week.
I think you're on the right track here, coordinating this stuff is what social workers do.
/r/GodzillasPencil here is the info for finding a social worker through Tricare: https://tricare.mil/CoveredServices/SpecialNeeds/CaseManagement
I doubt the phone wait will be any better than the va, but hopefully they can get you in touch with someone who is an expert at navigating this sort of thing.
Thank you!
The hospital's hospice services should have a list of home care aides. They should be able to share this list with you even if you don't put your dad in hospice. Hospice care does however provide a lot of great services and they should (crossing fingers) be covered by Medicare. Services should include bathing, a weekly (or more often) check-in with a nurse, spiritual services, and prescribing medications. Hospice does operate under the assumption that the patient is dying and does not prescribe medications meant to cure serious illnesses. Hospice isn't a one-way street though; you can leave hospice and return later.
For my mom we additionally engaged home care people out of pocket because she was bedridden and really needed someone 24/7. Home care ranges from people with nurse certification to people who do not actually have any medical training but are just doing chores like meal prep, helping with the toilet, body care, housework etc., essentially babysitting for old people. We did start with a list of providers given to us by hospice but also asked around among friends who had had to do the same thing.
Thanks for the info! I appreciate it. I don't know if he's ready for hospice care, but that day will no doubt arrive.