Assisted Living, Part I

I’ve thought about writing this blog post off and on, for about the last six months; the only thing that prevented it is that it’s going to be long. There’s too much to encapsulate in a few paragraphs, so this is part 1 of 2. Know that while this entire thread is using “parent”, this could hold for a sibling, aunt, uncle, grandparent, etc. We’re all going to need some kind of help at some point.

If you want to skip to the part about “what you need to do now” without the backstory, skip down to “What you should do right now“.

I’m part of Generation X, and our parents are elder boomers (for the most part). Aside from the political and socioeconomic differences (particularly heightened recently what with the elections and COVID) between our generations, I also find a difference in willingness to ask for help, and to talk about health issues. My mother was the perfect case in point: she’d announce she visited the doctor and then just as quickly announce that it was no one’s business what the doctor said. (Or she’d lie and say “everything’s fine.”)

It comes to us (the kids) to try to have these conversations with our parents about preparations and planning and wants and preferences for when they (and we) need help; what that help looks like, who administers it, and what happens when it’s not enough. I would love to say that for all four of my immediate parents — and six parental units total — we had these conversations with grace and aplomb. Unfortunately, we lulled ourselves into a sense of security because “dad says it’s all taken care of” or “mom has a will and living will and healthcare power of attorney and gave us copies”. The basic checklists that I found online, after the passing of my father in law (vowing to have the conversation with all of my parents to make sure this sort of cockamamie bullshit didn’t happen again), didn’t cover what I should’ve been looking for. I found this out just about a year ago, the day after Thanksgiving 2019, with my mom.

My mother was a drinker from at least the time I was 7 — and drank more heavily as she aged. For me it was noticeable as “more than just mom’s generation of drinkers” when, after she retired and became incredibly sedentary, she’d start drinking at noon every day and her glass would drain and refill until 10pm (every day). I later discovered she would drink up to the equivalent of 3 bottles of wine a day. A lot of erratic behavior (including falls, repeating herself, etc.) would get swept away under “mom had too much again”, and despite multiple attempts to reason with her she would not stop. There were other signs I did not get to see and that were not shared (to spare me), things like hallucinations and incontinence, and on Pearl Harbor Day 2019 Mom was admitted to the hospital with hallucinations and, it turned out, a need for near-immediate surgery due to complications from her drinking. She was discharged to a recovery facility shortly after Christmas, diagnosed as not-really-recoverable shortly after New Years’, and lived four more months in the facility as vascular dementia, successive mini-strokes, and a general disinclination to cooperate with anything or anyone accelerated. COVID struck during this period and we weren’t allowed to visit for about six weeks, by the time they granted us a special exception we knew why.

This process was a lot more painful than it had to be, because there were things I didn’t know and questions I didn’t know to ask; and so as with most things legal and health care in this country there were added hoops to jump through when I was already dealing with complicated things. Which is what brings me to write this all down, so hopefully if and when someone else needs it, they don’t have this added layer of administratea (or are better equipped than I was).

What you should do RIGHT NOW (regardless of stage)

1. Get a healthcare power of attorney.  Most attorneys have this as boilerplate with a bunch of questions you answer to get it done, but the thing is you have to have this.  No one will talk to you about your parent, or not really, without it.  And no doctor or nurse will listen to you unless you do. (If your parent wants the other parent to have this, fine. Make sure they do. And then make sure there’s one for that parent. And make sure there’s a backup).
   1. True story – mom had specifically written DO NOT USE FEEDING TUBES in her living will. The nurse checked the box for using feeding tubes if needed (right in front of me, her having read that NO FEEDING TUBES directive in moms living will, and having had me point it out) in front of me anyway.  I made her re-do it. Her explanation was that she “always checks that box”. If I hadn’t had power of attorney, I could not have spoken for my mother in that situation.
2. If your parent still has their marbles:
   1. Have them write a living will about what happens while they’re still ALIVE but otherwise incapacitated (mentally and/or physically)
      1. Do they want to be resuscitated?
      2. Do they want to use feeding tubes if they can’t (or won’t, because they’re “not hungry” for days on end) eat? (This is common!)
      3. Do they want to just eat junk food if that’s what they’re asking for?
      4. Is hygiene important to them? Do they want their hair washed regularly and their nails kept trim, even if, in their crazy-state, they say they don’t want it?
   2. Have them write a will about what happens when they’re not still alive:
      1. Do they want a funeral? An obit? Cremation? Spread ashes somewhere?
         1. Believe it or not, a lot of people specify cremation but not “what next”. 
      2. Walk through all the steps.
         1. It helps to use a story (real or fake) about someone else’s experience about a parent who didn’t have one or more of these things and then how the family didn’t know what to do and gosh isn’t *that* awful?
         2. Feel free to use mine. My mom *had* a will and a living will; but she didn’t say what to do with her ashes when she went, she didn’t say what to do if she refused to have her nails trimmed or bathing, she didn’t say if she refused anything but dessert that that should be okay, she didn’t say what to do if she refused physical therapy. We spent months “guessing” what mom wanted because we couldn’t decipher between genuine obstinance, dementia, and what was best.

If your parent clearly needs help and you’re running out of the ability to provide it for them

1. First, *objectively* assess your parent:
   1. When faced with authority – specifically, medical authority like doctors, nurses, pharmacists, therapists – are they compliant? Friendly? Acquiescent? Combative? Do they shine it on and do whatever they want anyway?
      1. This is important to address realistically, because any prospective healthcare environment (read: assisted living, etc.) will evaluate your parent – usually a nurse practitioner or therapist (or sometimes both) will both interview your parent *and talk to existing caregivers*.  And they take notes.
      2. If you have the combative/argumentative type, do they have an easy “key” – e.g., they can be bribed with food, or TV, or such?
   2. Do they have substance abuse issues? You must be clear about those, because it can impact medications and can complicate transitions.  A beer or glass of wine here or there is not really a problem.  A bottle of wine every day is a problem.  Most care centers do not allow alcohol at all.
   3. Do they get along with others?
      1. This will help you determine if, going to a facility, they need one that has lots of “community” events, or ones with lots of alone time or “anti social social events” (e.g., TV room).
      2. It will also impact how likely they are to receive the idea of having a roommate.
2. What kind of care do you think they need?
   1. If they need someone to check on them once or twice a day, to make sure they took their meds, ate, bathed, etc., then you can probably use home health care – someone who visits (usually a team).  Sometimes they do Physical Therapy as well.  This may be more cost effective than a home, and can help out folks who are already living with mom or dad but just can’t do it all themselves.
   2. If they need more regular care – they have incontinence they can’t self-manage, they are a fall risk, they are in later stages of dementia, or a couple of visits a day just won’t cut it – consider Assisted Living. There’s a lot of varieties of these:
      1. Ones where the parent gets what looks like an “apartment” of their own, with some furnishings but can bring some from home, and they get “visitors” to check up on them. (Some of these facilities have in-house doctors, others have docs that visit but in-house nursing). They get to go to a cafeteria for food (restaurant style), there’s group TV and crafts and  posted schedule of things, there’s field trips, etc.
      2. Ones where the parent gets their own *room*, but it’s more in a corridor situation, with a private bath.  In this case they get a specialized bed (usually), nurses visit daily and take vital signs, they are on a special diet, etc. etc.
      3. Ones where they share a room (usually a function of cost of #2 above)
      4. Ones where they are in effect in “lockdown”, aka memory care; they have their own room but they have a monitoring wristband or such that means they can only move in certain areas of the facility, and people check up on them more often.  This is for the later stages of dementia.
         1. You might start with home health and branch slowly into assisted living, depending on what’s better for mom or dad, or what’s more cost effective.
      5. A doctor may recommend one or the other based on medical condition (do they need physical therapy? Are they hooked up to an IV? Do they have post-op healthcare they need to heal up from?) and the ability of the person living with mom/dad to physically lift them in an emergency (for example, my stepdad could not lift my mom, so she could not come home, because if she fell – and she had a history of doing that – there was no way to get her up).
3. How much do you/they have to spend?
   1. Medicare does NOT COVER ASSISTED LIVING (or home health care)
      1. Medicare will cover specific physical therapy and post-operative recuperation stays at a rehabilitation clinic, for a max of N days (I think it’s 100), and only the first 20 are covered 100%
      2. And, if Medicare declines things that should be covered, you get to fight them (a lot) by using an appeals system (like described here).
      3. Most insurances do not cover assisted living (or home health care)
   2. Medicaid covers assisted living, but you usually have to blow through half (or more) of your cash assets FIRST.  Some elderly couples have divorces of convenience so the wife can keep the house so the husband can go to the assisted living place.  Medicaid’s coverage varies by state.
   3. Assisted living costs vary wildly, depending on what the facility offers and (frankly) how well-trained their staff are.  We wanted to get my mom into a really nice place, but they didn’t have wound care (she was post op and because of her vascular disease wouldn’t ever really heal). The really nice place was about $5500/month.  Where she ended up staying was about $11k/month, because they had wound care (e.g., the right kind of nurses available). 
   4. Home health care visits vary wildly as well, but it’s basically an hourly rate for two people and can range from $60-100 per visit, depending on what they do per visit.  That sounds like a lot, but as compared to $300/day, it may not be.

Next post: when it happens NOW.