Saturday, February 28, 2009

Go, Me

This morning I sat down to calculate how much care Dad needed and how much it would cost, which turned into a ridiculous exercise in rabbinical interpretation ("needs help with transfers" and "needs help to get to meals" are two different categories, but since the help Dad needs to get to meals includes help with transfers, do we need to check off both categories -- with their attendant expensive points -- or only the second?). My first effort put him off the chart, but I managed to scale back to a level that might be feasible if the VA comes through with a decent pension and if my salary doesn't wind up getting cut in the budget crunch. These are both big ifs.

The most expensive category -- incontinence -- is also the newest; disorientation is new, too. I found myself wondering if Dad could have a UTI, which could cause both of these symptoms and is treatable. An infection would also help account for his recent exhaustion. Elderly people often don't have traditional UTI symptoms, and the infections can be extremely dangerous: Gary's father was admitted to the hospital with a UTI twelve hours before he died, and that was the diagnosis that put my mother in the hospital most recently, too. In her case, the infection had gone into her bloodstream, and someone at the nursing home told my sister that this by itself would account for her disorientation, which can take a long time to wear off.

I called a VA advice nurse, who agreed with me that Dad should be seen. So I went to his place, woke him up from his nap, and said, "We're going to the VA now to get you checked out for a UTI."

I took him to the ER, since nobody else is around on weekends (and since it would take weeks to get him in to see his primary). They weren't very busy, luckily, and took him right away. The ER doctor agreed with me that we should look for something treatable, even though they can't do anything about Dad's "end-stage heart disease." I hadn't heard that phrase before, and it chilled me. My head knew what we were dealing with, but my gut hadn't quite gotten the message yet.

But, lo and behold, Dad does have a UTI! (He also has tremendous amounts of fluid in his lungs, but the doctor told me they can't do anything about that, because it's a function of his untreatable heart disease; he's already on lots of Lasix.) So we went home with antibiotics, after the doctor had told me that yes, a UTI could account for the symptoms he's been having.

I was inordinately proud of myself for making the right call, and Dad was glad that he has at least one condition that we may be able to make go away. While we were there, we also got new dressings for his skin tears -- his skin's very fragile, and he's covered with bruises and scrapes even though he's not on blood thinner -- and some foam to protect him from his plastic oxygen cannula, which had rubbed raw spots behind both ears.

We only spent a little over three hours there, which made it a very successful ER trip indeed. I was especially happy because I felt like such a fool after calling 911 in Palo Alto.

Once we got back to Dad's facility, though, things got more complicated. I got him back to his room, doled out his meds for the week (including the twice-daily antibiotic), and gave him tonight's meds with some Ensure and applesauce, since he has to take the antibiotic with food and dinner was over. So far, so good. Then I went to instruct the caregivers to make sure that a) he takes his meds for the next ten days and b) he takes them with food.

The caregivers explained that they can remind him to take his meds, but they can't give him his meds, or even stay to watch him take his meds, unless a) they have a meds list signed by his doctor and b) all the meds are in their original bottles. If I've put the meds in trays, the caregivers don't know what all the little pills are. In other words, unless they're managing every aspect of Dad's meds, it's strictly hands off. And if they manage everything -- you guessed it -- the cost goes through the roof. This isn't just facility policy: it's state law, probably because of the strict division maintained between assisted-living places and SNFs.

Aaaaargh! How can it be this complicated to make sure that an old man with an infection takes his antibiotics? The caregivers nodded sympathetically. They think the system's crazy too, but they're bound by red tape and liability issues.

I'll talk to the nursing director about this on Monday, but I don't expect anything to change. In the meantime, I'll call Dad twice a day to remind him, and they'll remind him too, and I'll probably wind up going over twice a day (at least for the first few days, until, with luck, his head clears a bit) to make sure that he's taken the pills.

I'm really glad we only live two and a half miles away.


  1. Anonymous2:58 AM

    Now that you've experienced a UTI with him you'll recognize it in the future. Your poor dad - so many moves and traveling around and doctors. I hope he can stay where he is for a while. Once the infection is cleared and he is more familiar with his living space, you'll be better able to assess what he needs.

    This is Lent when we're reminded we're all 'end stage.' Praying for you all.
    Airedale lover

  2. Oh Susan, God bless you. Been there, done that. Mama also had macular degeneration, and sometimes mixed up pill bottles. I took different colors of electrical tape and put on each bottle (not the lids) so she could tell them apart.

  3. Sounds like w/ government help they are nickel and diming you to death, Susan. No wonder my folks bought into a place that will give them care based on their investment in it. Neither I or my sister could afford the kind of care you are describing.

    Two and a half miles hunh? The route there probably isn't as beautiful as your neighborhood wilderness but in a pinch you could walk that and call it self care.


  4. You poor thing! So many speed bumps and so close together. I'm glad you went with your gut on the UTI and got the care your father needs. 24 -36 hour on the antibiotics and he should be much better. I think of you all every day and I hold you in the light. Take care.

  5. Anonymous6:53 AM

    Nice work, Susan! You go, girl!!

    Hope the antibiotics kick in nice and fast,



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