Friday, January 09, 2009

Bouncing Back

Today I spoke to the study coordinator in Palo Alto, who emphasized that many people are helped significantly by valvuloplasty -- although for varying amounts of time -- and that there's minimal recovery time; also, she said to tell Dad that if this buys him enough time, he could get the new valve after it's approved.

So he's scheduled for the procedure next Friday. We'll be driving down Thursday, and, with luck, driving back home sometime over the weekend. I don't start teaching until the following Wednesday, so there's a little wiggle room, although weather could throw a real wrench into the works. But we'll have to deal with that as it comes.

I felt more cheerful about the whole thing today, and so did Dad, who was delighted to learn that there's some chance -- however slim -- of getting the valve at some point.

My friend Sharon and I visited five assisted-living places today. (Sharon's been one of my rocks through all this: thank you, Sharon!) Three of them were quite grim, all dark with small yappy dogs. I don't know why these creatures correlate with lack of light, but there certainly seems to be a connection. One, in addition, stank of urine. Yuck.

However, two of the places were very nice. One's a private home with a maximum of eight residents and one current opening, where Dad could have his own room with a door leading out to a lovely patio. I was impressed by the questions the administrator there asked about his medical care and needs. The place was clean, bright, cheerful, and had no animals at all.

Upsides to this place: a homey, intimate environment, lots of personal attention, and they take Medicaid waivers (which I still have to research). Downsides: Dad would have to pay down his limited assets to become Medicaid eligible, and he'd have to get rid of almost all his own furniture. His room would be cheerful, but small.

The second place is one of those huge, fancy assisted-living facilities that look like swanky hotels, and where each resident has his or her own apartment (a studio, in Dad's case). There's transportation, an activities calendar, gorgeous grounds and amenities, a LifeLine included with the price, etc. This is the kind of place that I would have considered unaffordable, and that would be if we were paying the full price. Luckily, they have a low-income program.

Upsides: Dad could keep his own furniture and would have a lot of privacy, including his own bathroom and kitchenette (with a small microwave and fridge), although three meals a day, with a restaurant-style menu, are included in the price. Also, he could keep his assets.

Downsides: Somewhat less personal attention and extra fees with mounting medical needs. And they don't take Medicaid.

The price for both facilities would be $2,000/month. (Yeah, that's a lot, but at the swanky place, non-low-income folks pay a $4,000 registration fee, and their rent starts at $3,750/month.) For the first, Dad would pay out of his assets until Medicaid kicked in, however much it would kick in (again, I have to research this). For the second, he'd pay $1,500/month -- almost his entire Social Security check, although he does have some savings) -- and my sister and I would each kick in $250/month.

When Sharon and I went over to discuss the options with him, he was surprisingly open to the idea: willing to consider it, anyway, although he'd prefer to stay in his own place. It sounds like he's leaning towards Door #2, where he'd be able to keep a lot more of his own stuff. I told him that I'd be happy to live there, and I meant it. He's feeling guilty about the fact that Liz and I might have to help, but I told him -- and meant it again -- that it's easily worth $250/month to me to know that he's safe and well cared for. And my sister's fine with this plan.

So he and I are going to go look at both places sometime early next week. Sharon pointed out, gently, that choosing one of them now would be easier than having to go to one of them if something happened later.

Gary's balking at all this. Last night, when the only place I'd seen was one of the dark houses with a yappy dog, I'd decided that I'd support Dad's efforts to stay in the apartment as long as humanly possible: falling in a place where he was at least somewhat happy would be better than being protected in a place where he felt suffocated. But tonight, when I've seen nice assisted-living places, I have to confess that I'm leaning towards that option, partly because of the peace of mind it would bring me. Gary wants Dad to be able to stay in the apartment, though, if only so he won't be subjected to another move.

Ultimately, it's up to Dad.

We'll have to see what happens; the valvuloplasty could make a big difference. But in the meantime, I can breathe a little easier knowing that there are acceptable options out there!


  1. My husband's grandparents were in the apartment-type asst. living. They moved there at 83 and lived to see 96, both of them. There were get-togethers, cards, and dances with their era of music. They were driven to the grocery and various other places. My Aunt currently lives in one and is very happy with her friends. If you choose the smaller place, check and see if they support any social activities.
    From your posts, you're dealing with things very well. Good Job!


  2. Good luck with it. God Bless.

  3. Susan, My parents live in one of the type 2 places, although theirs is owned by the residents and the buy in is much higher. The dining room is nice, there is help for house cleaning weekly, a library, chapel for services, lots of different activity clubs like computers, quilting and other interests. The staff really cares about the residents and my parents are very happy there. Mom has needed more help for living twice so she made temporary moves to the main building and was bussed to her physical therapy appointments. Currently their best friends are planning to move in so the companionship of the community keeps growing. It's a lovely way to retire. I hope your Dad likes it. Maybe if you took Gary by he'd feel better about it too.

    Prayers ascending for success of the valvuloplasty and the future chance for the valve replacement. "Dad keep doing that physical therapy!"


  4. Looking at the time frames, I'm with Gary for the moment.

    He's going to Palo Alto on Friday, which means he could either (1) spend the next four days packing and moving or (2) spend the next four days gathering strength.

    He's coming back, theoretically, some time Monday or Tuesday--or later, since it doesn't sound as if it's the type of procedure where you are likely to bounce up the next day. He can come back to either (1) the place he knows now or (2) the place he just moved into.

    Both cases have fairly clear answers on top of the other issues.

    So I wouldn't do anything until after he came back from Stanford Med, especially since it doesn't seem as if there is a constraint on available studios at Place #2.

    Take the 7-10 days; worst case would be that he would have to go into Place #2, which seems to be your preferred option anyway.

  5. Anonymous5:49 PM

    Take care of yourself so you can take care of your loved ones over time. Absent you, everyone is in trouble!

  6. Thanks, everybody.

    Ken, nothing's happening until the end of January at the earliest!

  7. Just want to second the comment that a lot of the AL staff really do care a lot about their residents. Many times, in both personal experience, research interviews, and the literature, you see the phrase "I think of him as like a grandfather." I know that independent living is often important, but as you say, it's the balance between autonomy and safety. Never easy to judge where the trade-offs should be, but I think if that middle line can be walked in a context that allows for maximum dignity for you dad, it's doable.

    More thoughts and prayers for you and yours.


Note: Only a member of this blog may post a comment.