How it looks at street level -- typical. Two days at my desk, trying to write some fairly demanding professional material with one hand and managing Alzheimer's with the other.
Highlights -- Monday, a message from C, a nurse with the Visiting Nurse Service. We've known C for nearly five years, ever since she worked on his post-discharge care after his first hospitalization. Now she's handling the skilled needs assessment for the Medicaid application, and coordinating the medical side. She calls to say that Dr. R refuses to fill out the physician's materials since he hasn't seen my father since sometime last Spring.
Reaction -- relief. At least someone is acting like a responsible professional. I call Dr. R's office and make an appointment for Wednesday. Then I take an hour out and write up the latest list of symptoms and fax it to Dr. R's office. Then I call E and make sure she can get him to the appointment.
My father calls about five times in the course of the day. Each time he asks if he's woken me up. His news -- he's sat on his eyeglasses and broken the frame. Another call to E to make sure she can get him (or at least the glasses) to the Lenscrafters on Broadway. He calls back later to tell me he's got the stomach flu. This is concerning -- second time in about a week. What does that mean? Immune system collapse? Something more serious? What if Dr. R wants to run tests? He often wants to do that. How am I going to handle the hospitalization? There'll be my father in the hospital and starving cats in the apartment. Can the Partners aides feed cats? Or is there some regulation that keeps them from doing that? Do I need to go up to New York and stay there and camp in the apartment? Several hours before I can track down all the stray thoughts and emotions and put them back in their feeding pens. Regrettably my mind is not yet an ally.
Today relatively calm 'til the afternoon frenzy. First call from my father around 3:30. Has he woken me up? His stomach flu is fine. He knows what it was -- he ate too many Ding Dongs. (Add to my list: check on his nutritional needs, perhaps spend some time reading Zippy the Pinhead). But mainly, he wants to share his excitement -- E forced him into the shower and gave him a thorough bath. This is a good thing. He's afraid to get into the tub by himself and he's been giving himself sponge baths in the sink. I've been after him (and E) for a month to get him into the shower. The appointment with Dr. R provided the leverage. I'll take what I can get.
Now he's sitting there in his going-to-the-doctor clothes, waiting for E to come back and take him to his appointment. I tell him that's great but explain that she won't be back for a while -- several hours, since it's now Tuesday afternoon and we have to go all through the night and through tomorrow morning before E takes him to the appointment. Reaction: he's agitated. All that time? Does E know? She seemed to think she'd be coming right back. Can I call her and make sure? Can I call her and then call him back? Sure.
I do, in fact, plan to call E. I need to make sure she has the address. But first I try to finish the document I'm working on. And in the middle of that he calls me back. Panic. For once I can guess what's going on. It's a little after 4 and D, the afternoon aide has just showed up and he's all upset that the wrong aide is going to take him to the appointment. Find E! Make sure she's going to be here! And then you'll call me? Yes. Sure. Yes.
E has all the information she needs. I'm about to call him back when I get an e-mail from H, the case manager over at Partners. My father tried to fire D. At least for the day. He wanted to make sure there wasn't going to be a home health aide collision, what with E coming back tomorrow morning, which to him is any minute now. So he told D to get the hell out. D called H. H tried to tell him that the appointment wasn't 'til tomorrow. He led her through a long explanation of the path to tomorrow. "So when it gets later today and then we have another one, then that will be tomorrow afternoon?" Yes, she tells him. What I know and she doesn't is that the explanation won't take. Ah, what did I tell you? Here he is on the phone again. Have I talked to E? Yes, and she's up on all the arrangements. And when will she be here? I tell him it's best to relax -- it's going to get dark and he might want to have something to eat and watch some baseball. And D will be there for a while and then go. And then when it gets light again E will be there, and they'll go to the appointment. He makes agreeable sounds and I can tell he isn't following. But I lean on the key messages -- everything's in order and it's OK to relax -- and that seems to work.
Follow-up from H -- should D report to work tomorrow? Answer: yes. For my part, selfish reaction to the e-mail exchange -- at least now H can see a little bit of what I've been going through. Something to discuss at the riot act meeting Thursday morning. Ah, yes -- the riot act meeting.
Finally a call from C. She explains that she can't identify a "skilled need" -- a condition that would justify skilled coverage. Apparently Alzheimer's doesn't qualify. The healthcare system is very good at putting drugs into organs, but when you get beyond that... She says my father will have to be downgraded from aides to attendants. What's the difference? She's a little unclear. It seems that attendants are less skilled, but not in a way that matters. Ah. But, I ask, can they do the Heimlich maneuver? She's not sure -- but she's not sure the aides can do that, either. Well, but one of them did -- three times. Doesn't the choking risk justify some level of coverage? No, she says -- the swallowing test is too far in the past to be relevant. It dates back to last September.
Wait a minute. You're telling me the swallowing test is too old to be relevant? But the swallowing problem is a progressive condition. It's not like you get the swallowing test and then they cure your swallowing. It keeps getting worse. He's been Heimliched, what, three times since the first of the year? Something like that. Yes, she understands what I'm saying. But that's the way Medicaid (or is it VNS?) recognizes the condition. And she understands that the lawyers recommended aide coverage...
No, hold on. The lawyers didn't recommend aide coverage. Partners in Care recommended aide coverage...
Maybe after the visit with Dr. R you should talk to my supervisor, she says.
Yes, that's a good idea. I think I will. Put that on the to-do list.
I raised the question a couple of days ago in the Caregivers Forum -- and will raise it again here soon -- about when we're all going to get fed up to the point where we get radicalized. Why is it OK that we're all out here on our own like this, improvising, with no formal support system and sometimes no support at all?
More on that at some future point.
But more immediately...
Tomorrow Dr. R, and another dinner with my father.
Thursday the Riot Act meeting with the home health providers.
Calls and e-mails and letters throughout.
Perhaps Friday my own hospitalization.
Or failing that, more of the same.
I raised the question a couple of days ago in the Caregivers Forum -- and will raise it again here soon -- about when we're all going to get fed up to the point where we get radicalized. Why is it OK that we're all out here on our own like this, improvising, with no formal support system and sometimes no support at all?
Hi Alan,
I'm sorry to hear you are having this difficult time. Your
comment above is something I was trying to explain just yesterday
to my husband when he wanted to know why, if so many people are
getting Azlheimer's, why doesn't anyone do anything to get more
help for us. My thoughts were along the lines of the fact that
so many of those affected are using all their energy to be caregivers and work at surviving, paying bills, eating, ect., at the same time that there is no energy left for calling congressmen or organizing lobbyists or whatever else would need to be done. Most of the time it is older people and their spouses who are also older and once the person with the illness dies, I don't think those remaining want to think about Alzheimer's anymore since every moment has been occupied with it for too long. We will need more people not so immediately dealing with this to be advocates for change and how do you get these people radically involved enough to force a change?
Did you read the 10 Steps for Caregivers, specifically the Therapeutic Lying? I now feel justified in lying to maintain healing calm.
Also the book you suggested, "The Majesty of Your Loving" is a life-raft for me. The writer says we should always accept help when it is offered. I'm trying to be open to that.
Thank you again.
Posted by: julie e | March 26, 2008 at 11:12 AM
Thanks, and sorry for the slow reply. It's been a long week (see the latest post for more -- and also some expanded thoughts on the lack of resources, and the society, and like that).
I haven't read about Therapeutic Lying but get the sense I've been doing a fair amount of it.
I'm open to help, too.
Posted by: Alan G. Ampolsk | March 28, 2008 at 08:01 PM
found your site while searching for Alzheimer's + stomach flu. (we are dealing with the real thing over here and it is not pleasant.)
Reading this post resonated with me tons. I am the full time care-giver to my 86 year old Grandmother and the lack of support for us, the care-givers, is so wrong. So many people tell me the answer is just to ship our loved ones into care facilities- but I want to be the caregiver. I just also want there to be some sort of network or union to fall back on when we need it.
Posted by: Calliope | May 05, 2008 at 04:32 PM
I've had several people tell me, "just put him in a home." In particular, there was a career advisor who was quite insistent about it. I no longer deal with him, for this and other reasons.
At some point when I have more time, I'm going to get back to this issue of the lack of support, or of any kind of system. The fact that we're all out here on our own is a big issue, and a bad one. It needs addressing.
Posted by: Alan G. Ampolsk | May 06, 2008 at 02:21 PM