December 17, 2003
A typical day (but none are typical)
Mom e-mails and/or calls me 5 or 6 times a day, to tell me
a) she had to bundle up warm to walk to Rite-Aid (a block away) to buy a new pan with Teflon because she forgot her pan on the burner and it burned up.
b) She’ll sure be glad when she can drive her car (I’m still straightening out the insurance, the expired registration and plates, and the lost title; now have the replacement title and have to get her signature then go to DMV to register the “sale” from the Center to Mom. DMV is half an hour away.)
c) She asks, when is our appointment with John, she forgot. John is a mutual friend who used to work in NY publishing; she called him and said she wanted him to read her Story of a Life book and give her advice about publishing it. She told him Judy would bring her over to talk about it. We don’t have an appointment yet, because I haven’t had time to call him and make the appointment, let alone drive her to NW Portland to see him. Twice. Once before he reads it and once after.
d) The paper is stuck again in her printer. This is a daily problem. It turns out this time it isn’t the paper, it’s out of ink, so I have to replace the cartridge because when she tries to do it herself I have to spend literally hours and hours trying to get it to work again, including several long calls to HP help lines. Other times she says it’s broken again—almost daily—it turns out she forgot how to print from her computer and is pushing the Copy button, or she’s pushing the Scan button when she wants to copy. I got her the multi-function printer so she wouldn’t need to make so many trips to the copier store. When I easily print the document from the computer that she was trying to print, she gets angry and says she DID that, and it DIDN’T WORK! When e-mail comes back because it has a totally garbled up address she typed in instead of using her automatic address book, she insists that she used her address book, she DIDN’T type it in, but when I go to the Outbox and check, there are garbled up messages where she typed in the address. When I delete them, she doesn’t get the annoying message anymore, but she always says she DID check the Outbox and there was nothing there. She can no longer read or understand or follow even the simplest instructions (I’ve made a very simple manual for her) about how to use her e-mail or printer. But she’s desperate to keep using it, sees it as her only link to the outside world these days. So it takes daily help and fixing.
e) She sent me a Verizon e-mail that says she’s used more than 125 hours this month and will be charged for all the extra hours, and gives a web site to go to. She can’t understand web sites. I went to the web site and found she had gone up from an average of 50 hours a month to 260 hours this month so far. I had noticed her computer is often on-line even when she’s not using it. She said that when it asks her if she wants to disconnect she always says No. She’s forgotten that when she’s not using it she needs to disconnect. (This took an hour on-line and on the phone, had to change her password, etc.)
f) She needs some more ground coffee. The only kind she likes (me too) is from Schondecken coffee store in Sellwood, where she used to live and I used to live. When I buy mine, I usually get her some too. But lately she says she doesn’t need it when I go, so she runs out when I don’t need to go for myself. It’s twenty minutes away.
g) She doesn’t like to take the little pill that she has to cut in half, because it scratches her throat. I went to Kaiser and asked them to give her a pill with half the dosage so she doesn’t have to cut them in half. They said that would be a very expensive special order, because they don’t stock the lower dosage. I put in her new prescription anyway, then Jen and I went to talk to the social worker about her living arrangements. That took an hour and a half, and afterward I forgot to go back to the pharmacy and pick up her prescription.
The other night we took her to the Gospel Christmas concert—100 voices from 49 churches, and it was beautiful. Then took her out to eat. She didn’t seem to enjoy any of it. When we took her home I checked her pill box to refill it, and she said she was sure glad she didn’t have to take that Fosamax anymore. I told her she was supposed to keep taking it once a week. Big flap—she believes she was taking it only to heal the fracture in her spine, which she says is almost well now, so she said she’s NOT taking any more of that Fosamax, she HATES it. Turns out it makes her dizzy for half an hour. And she probably has trouble remembering to take it. For the first month I went over very early Saturday mornings to give her the pill and make sure she didn’t eat or drink beforehand, or for half an hour afterward. But then she seemed to be able to do it herself, by posting a reminder I wrote up, on her bathroom mirror. As long as I called her Friday nights to tell her to post it. When I tried to explain that her doctor prescribed it to strengthen her bones so she won’t have any more fractures, so she needs to keep taking it, she flared up and yelled at me that that wasn’t true, she was going to call her doctor and find out. At that point I lost it and threw up my hands (literally) and said I didn’t care if she took it or not, it’s her body and her life, and she can choose what to do with it. She can choose to have fragile bones or take the pill, I don’t care, it’s her choice and I refuse to be the Pill Policeman, I hate that job!
So I’m not refilling that prescription. I’ve been paying for her copays on pills, and that particular one is a $10 copay per pill, so $40 a month, and it’s fine with me if we stop it.
I spent couple of hours on the phone with the Area Agency on Aging to set her up for Medicaid payment for an aide. Now they are going to send someone out to do an in-home evaluation, which they must do before they can pay out state money, and I’m not looking forward to that visit. Of course I’ll have to be there, and of course she won’t tell them the truth about how mentally disabled she is. Or if they can see it, or ask the right questions, she’ll be angry and yell at the guy and refuse to answer. I hope they’re used to that.