Friday, February 27, 2009


Today I spoke to the homecare social worker, who agreed that the PT had behaved completely inappropriately, but also said she'd given us completely incorrect information. Group homes -- the good ones, anyway -- are more expensive than assisted living, not less, and there's something like a two-year waiting list for the waiver program that would make them affordable. So if Dad can't stay where he is, his only option will be to go into a nursing home, apply for the waiver program, pay his assets down until he's on Medicaid, and wait to see if he gets into the waiver program and can move out of the nursing home into a group home.

Gary and I talked about the possibility of paying up to $800/month ourselves -- although that would be very difficult for us to maintain -- to keep him where he is. What could we get for that? Could we get enough services?

In the meantime, I swam, gave a presentation to a local elder-college group, had the final inspection of the old apartment (which went fine, and my key ring is now pounds lighter!), and called Dad to see if he wanted to go to a concert with us tonight. He decided he did. He'd gone to the exercise class at his facility today and enjoyed it. Much cheered, I told him that Gary and I would be there around five to have dinner with him and take him to the concert.

But when we got there, he was sitting semidressed in his wheelchair. He didn't want to go down to dinner, let alone to the concert. I managed to coax him into eating some applesauce and an Ensure and checked his temp and BP -- both of which were fine -- and also rebandaged a wound on his arm that had reopened. He bleeds very easily these days, and his arms are horribly bruised.

As we were getting him changed into his PJs, he had an accident, so we summoned a caregiver to help get him cleaned up. This is the third time this has happened, so she's recommending Depends. Lots of people there wear them, but Dad won't be able to get in and out of them himself . . . which already, by itself, puts his care level above what we can afford (at least, if I'm reading the contract right: there are complicated point systems for different kinds of care, and numbers of points translate into drastic jumps in cost).

I'm afraid that putting him in a nursing home will kill him, although my sister and Gary both think that's starting to look like the only option. I don't know what to do. Thank God we're meeting with the social worker on Monday.

Oh, and before he could go to a nursing home, he'd have to be admitted to a hospital for three nights. I'm sufficiently worried about his sudden downward spiral that I'm tempted to take him to the VA ER anyway, just to see if they can find something that can be treated, but he'd fight me tooth and nail on that.

On the plus side, I had a decent conversation with my mother today, and gave a well-received presentation to a local elder-college group, and swam.

Thanks to everyone for the comments, especially about how these dreary narratives are helping you. That helps me, because I feel like the most boring person on the planet right now!


  1. Anonymous7:38 PM

    Susan and Gary, please don't let what you think/feel Alan(Dad) would like, to interfere with your good judgement. Alan looked tuckered to me when we moved him to Atria.

    I have a dear friend now in end times. We might say she's young, compared to your parents, but she has cancer. In the beginning, she doesn't want to die. Now she concedes life isn't worth living if there is no pleasure, no fun, no good meals, no good wine.

    I strongly feel we, in this country, need to identify what LIFE is so we can support it. We also need to identify what DEATH is so we can support the process.

    Relatives like you should not be left with guilt. Guilt, in your case is balderdash.


  2. Hi Susan, I've been quiet but praying for you all... Now, I'm guessing your Dad is on a blood thinner, right? That would explain the easy bleeding and the bruising. Hopefully he is having his levels drawn and watched closely; too much, and he bleeds TOO easily and gets anemic along with other possible complications. Heart meds can make a person feel lethargic and purely crappy, no question about that. However, the incontinence is worrying, that's kind of new, and unpleasant for you as for him.
    I think Sharon's point about guilt is well-taken. You may have very limited options for his care, and he may not like them, and there may not be much he can do about that. But I also agree that conversations about quality of life, if only between you and Gary, could be important. Does your Dad want to continue fighting his heart disease? With meds and procedures and etc.? Is his disease "end-stage"? Are the heart medicines and blood thinners etc. intended to prolong life mainly, or are some for comfort as well? Depending on what might be most important for you three, it might be possible to change things around a bit. You may be right that a nursing home would be awful for him. On the other hand, he has a very bad heart, which is not conducive to long life either.
    This isn't an easy time, believe me I know that, and the one thing that *might* help is to get a sense of what the parameters are and what would make the best sense in terms of quality. That said, there are people to whom agency and independence are far more important than safety, or comfort, or perhaps even dignity. So what we might all think is best for him might not be anything like what he would want.
    I'm sorry to come across as a real downer, but I just wonder if it wouldn't be helpful to have some more sense of what the goal of care might be. You know I am praying like mad.

  3. Still praying for you all.

  4. Hi, Susan--

    I've been a follower of your blog for quite a while now. I came because of your writing. Each one of your novels has impressed me deeply, and I really enjoyed the short story collection as well.

    I stayed reading because of your honesty about your life--your relationships with your husband, your cats, your faith (I'm a sort-of panetheist allergic to fundamentalist Christianity but find your version of faith gives me hope for the faith), your teaching, and your parents.

    I'm glad you're willing to share your difficulties with your father's health--so few people have the time or inclination and so many are dealing (or like me will soon be dealing) with similar situations. It helps to know your journey through this this. I know there is nothing I can do to help personally, but know that I and others like me are out there thinking of you, empathizing with your situation, and sending you our prayers (for differing values of "prayer").

    Also, selfishly, I keep hoping to hear that magically you've managed to scrape out time for another novel, though I know this just isn't the time for that, and in the meantime I have this to read.

    Thinking of you.

    (Clarion West grad and current administrator)

  5. Thank you, everyone!

    Terri, no, he's not on blood thinners; he's just a bleeder.

    More later . . . .


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