Thursday, February 26, 2009

Assisted-Living Politics

After I heard from Dad's physical therapist this morning, I called the sales director at the facility -- she's one of the people I really like there -- to tell her what we'd been told about Dad needing more care. She promised to confer with the two nursing directors and schedule a meeting with me.

I spent most of the morning on the phone dealing with other Dad issues (mostly trying to reschedule various VA appointments), as well as attempting to straighten out some insurance issues of my own. Then Gary and I went to Dad's old apartment to get his remaining belongings out of there (except for some stuff we're leaving for the social worker to give to folks who might need it). We tossed a lot of stuff and packed up the rest. I became weepy when we threw out his old tools. They probably aren't operational or safe anymore, and even if they were, he'd never use them again, but they represent his loving and never-ending repairs on the sailboat he lived on for twelve years -- the happiest time of his life, it seems to all of us now -- and it was really hard for me to consign them to the trash.

We had to make two trips, and after we dropped the first load off at our house, we went by Dad's place to check on him, since he hadn't been answering the phone. He hadn't answered because he hadn't heard it, although he seemed more or less okay otherwise. On my way out, I stopped in to say hi to the sales director, and she called the two nursing directors into her office, and we had the meeting right then and there.

It turns out they were furious at the physical therapist for talking to me and Dad (and getting me, at least, pretty upset) without talking to them first. They don't agree that Dad needs to be in a group home, and they felt they should have been consulted about any extra needs he had before someone else told him he had to move again. They'd already called the home-health agency to complain -- although they also said the PT is very good at her job -- and they promised to work with us to keep him there within our budget. This is going to be a challenge, since my estimate is that he needs a minimum of $500 of extras a month (and the outside home-health agencies I've been pricing aren't much better), and even the base price already has us strapped. But Gary and I had already decided to keep him there at least another month, just because we're all so tired of moving. I could hardly find a good group home and get him moved in before March 1, anyway.

I felt somewhat reassured after the meeting, although of course it's hard to tell how much of their motivation was concern for Dad (and me) and how much was desire to keep business in a tight market. They may not be able to sort that out themselves. Also, Gary and I agree that there's a clear and consistent good cop/bad cop dynamic: one of the women in this trio is a real hardliner about charging every penny for every service, whereas the other two seem more willing to be flexible. Again, I don't know how much of that is simple personality differences, and how much is strategy. But I felt like they'd heard us and like Dad would be getting more attention: for instance, they said he'd expressed interest in the daily exercise class, so they're going to send someone up to his room every day to invite him down.

We went back to the old apartment, finished packing up, and headed back to Dad's place to bring him some clothing he'd left behind. I'd known that he was going down to dinner, and I'd expected the caregivers to bring him back up to his room and make sure he'd successfully switched from his portable concentrator to the big one.

To my alarm, we found him in his scooter in the hallway outside his room. Our best guess is that he drove himself back upstairs after dinner; a caregiver we talked to later said she'd told him to press his call button when he needed to go back to his room, but that he hadn't done so. When we found him, his concentrator was beeping a "no breath" alarm because he'd taken off the nosepiece, because he was trying to take off his shirt, which probably means that he thought he was aleady in the room and was trying to change into his pajamas. His call button had fallen on the floor next to the scooter. I doubt he'd have been able to retrieve it by himself. Someone would have come along eventually, of course, but he never should have gotten stuck there in the first place.

I got him back on air, and while Gary carried things up from the car, I got him into his wheelchair. The PT told me he's now having trouble transferring, and I think so, too; I'm not at all sure he'd have gotten into the wheelchair safely without me there, although of course he insists he's fine. When I got him into the room he asked me to help him arrange his meds for tonight and tomorrow morning, and I discovered that he'd never taken this morning's meds.

So Gary and I are concerned, to put it mildly. I'm wondering if we should try to get him into a group home sooner rather than later. Gary's wondering if we should go straight to a nursing home, although I'm loathe to take that step.

When we spoke to the caregiver, she seemed pretty upset by how we'd found him, and said she'd make sure someone checked on him after dinner from now on. She also said that he'd expressed worry about extra charges, so he may have tried to get himself back after dinner to save money. I have to make him understand that there won't be extra charges we haven't agreed to (a point the three women emphasized in our meeting). I'll call the sales director tomorrow and see what's going on. We're already meeting with a social worker on Monday, and she's supposed to be working on expediting our application for a VA pension. Even if we get it, it's not likely to be much, but every little bit helps.

I feel wretchedly inadequate to this situation: although I spent almost all day working on Dad's behalf, he couldn't see any of that, so I think he feels neglected, and I feel as if I should have done a better job of shielding him from financial worries so he won't do dumb things and endanger himself, and I also feel caught in the middle between the assisted-living staff and the home-health folks. (The assisted-living staff pointed out that this is precisely one of the reasons the PT should have handled the situation differently.) And I'm hoping I didn't get the PT in trouble, because I like her.

What. A. Mess.


  1. My heart goes out to you. I went through similar struggles with my precious mom. In the end, it was a great comfort to me that I had tried so hard to see to Mama's needs.

  2. Anonymous8:35 AM

    My thoughts are with you. I'm heading to my parents' place this weekend to sell their car (which my mom finally agreed to give up). We're going through a raft of precautions -- both legal and physical -- so that their final senior years are comfortable. Thank you for your blog. It has helped give me the strength and courage to deal with my parents' growing frailty.

  3. Anonymous10:53 AM

    Wow. What a gift you are to your Dad. I hope you can see that, even if he can't always. You're doing wonderfully by him. It's human to worry if you're doing enough (or doing it WELL enough), but trust me when I say you are a wonderful daughter.

    And don't worry about the PT and the folks at the assisted living joint. They'll get over it.

    To echo what the previous commenter said, your recounting of your Dad's and your's tribulations helps me in my daily dealings w/ my aging parents, one who's in a nursing home w/ dementia.

    Jeff P.

  4. You are treading a difficult path, just wanted to let you know again that I am thinking of you and your family from way across the seas in Liverpool UK.

    My best wishes to you and your loved ones.


  5. Susan, you're trying so hard, and doing so much, and also trying to do self care -- by sharing your particular story, with your wordsmithing abilities is a gift in and of itself -- so many are struggling with the same thing, and it is so helpful to see that one is not alone. Blessings on you for that.

    One other thought, that I know is hard, but I think bears at least reflecting on:

    Our culture and health care system is really into autonomy...until we get old. So many of us who care for (either personally or professionally) frail older adults want to do everything possible to keep them safe -- it's the right thing to do, and it makes sense, because they're our parents/clients, and we want them with us, happy and healthy for as long as possible.

    But in the process, I think we can go too far in the safety direction and forget about the autonomy piece, especially when there is some cognitive changes (and your dad is very vulnerable to the confusion that comes with hypoxia).

    So the roles get reversed, and we "parent" our parents -- and in the process I think it becomes very easy to infantalize them.

    I am not saying this to criticize any of your actions or decisions, just to, as I said, give us all pause for thought about how we are keeping those we love safe.

    One of my favorite illustrations to this was a gentleman who regularly aspirated food. He was put on a purred diet, and there was talk of tube feeding. The problem was that the facility had vending machines and he would buy himself things to eat. A family conference was called to discuss his eating issues (and there were cognitive issues too). He sat quietly through the whole discussion, head bowed, until one point when he said "I would rather die than to think I could never have another piece of Marie Callendar pie."

  6. I've just spent the past week with my elderly parents and so much of your post resonates with me. You're doing a great job looking out for your dad. It's just that the "system" is frustrating beyond belief. You, your dad, and your husband, too, are in my prayers.
    Maggie in NC


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