Dementia Nights

Holiday Visit II

It started out OK.  He was talking about holiday retail sales.  Struggled with the words a bit but the question was decently clear - were people buying this season or not?  He'd heard that they weren't.  A pretty good level of focus and awareness.  When he was a reporter - back before he got into the magazine business - he used to cover retail.  So that's a hardcore topic for him and it was surprising, but nice, to see that he could still get into it.

Then he told me that someone had called him the night before to say I'd be visiting, but he couldn't remember who it was who'd phoned.  It was me, of course.  New disconnect - he can't put me-in-the-room together with me-on-the-phone.  Predictable given all his other problems dealing with identity, but still a change.  Noted for the record.

Then we went back to the bedroom and as he sat down on the bed, he started waving vigorously at his reflection in the big wall mirror.  The reflection waved back.  He said he didn't know who the person was that he was waving at - but it pays to be as friendly as possible with everyone you meet.  Sometimes the person waves back, he said, and sometimes the person doesn't.  Work with that, why don't you?

Then he went off into an obsessive riff about groceries, and we stuck there for the next two hours.  An endless-seeming loop.  There are no groceries in the house.  I've got to get groceries.  How do I do that?  Where do I go?  My mother used to do it but I never did and I don't know how to do it?  Should I go to Ninth Street (90th Street)?  How do I pay for it?  I've only got three twos (three $20 bills).  I have to get food for the girls (attendants).  How can I afford food for them? (You don't have to pay for them, they buy their own food).  How can they buy their own food?  (They get paid and they use the money to buy food when they come on the job).  Who pays them?  (The government).  And who pays the government? (We all do, with taxes).  And who pays us?  But no, the thing is, I've got to get groceries.  There are no groceries.  And I've only got three twos...

And so on, from 9:30 'til 11:30, with increasing urgency and distress.  He's been going on about food for several days.  But I noticed that this particular loop started as soon as he'd taken his Seroquel.  Found myself wondering if there was a connection.  This was something to do while I tried to track with the conversation and find my place and come up with solutions that'd calm him down (like slipping more cash into his wallet so he'd feel solvent...)

Eventually I stepped out of the room and went to talk to C, a very good night attendant.  I noticed that there weren't a lot of groceries in the house - cupboards were bare.  A problem.  C and I put together a shopping list (emphasis on staples and foods he'll enjoy and foods he can swallow).  I showed her the petty cash reserve (kept separately) and she said she and J, the day attendant, would do a grocery run.  I told them to over-buy - am guessing that if there's an abundance of food out on the countertops, he'll see it and relax.  Then I went back and told him that the attendants were going to help out with the groceries and there was no work for him to do this time.  It took a few rounds to get that across but I think we got to a point of stability.  He was starting to yawn so I left and got onto the street and started gasping for air.  It was a little like coming up from a deep dive - the surface seems strange but you're happy to be there.

And that closes out the year.  I'm going to try to avoid doing year-over-year comparisons.  If you want, you can do your own.  The blog's almost a year old so you can go back through the archives and check on the rate of decline.  It's fairly interesting.  But I've reached the point where to me - clinical considerations aside - it's not that big a deal.  The fact that he's one way now doesn't contradict the fact that he was another way then, or a decade ago, or what have you.  And vice versa.  Fine - he used to put out 17 monthly magazines with a staff of three and now he's waving at the (sometimes unfriendly) stranger in the mirror.  That's who he was then and this is who he is now.   Things change.  You wish they wouldn't but they do.  So you try to relieve the pain - his and yours.  That's all.

Sorry.  A moment of Zen.  They come on from time to time.

I talked yesterday with the Maryland care manager.  She's sending me an information packet and we'll meet next week or the week after.  She gave me a referral to a Maryland elderlawyer.  I'll start 2009 with a big task list and I'll see about kick-starting the big nursing home transfer machine...

First, more down time.

See you next year.

Holiday Visit

And - as often happens - the visit went pretty well.  The dread can be worse than the reality - not always, but sometimes.

He'd had visitors, and that put him in a good mood.  Nellie stopped by.  Nellie is an old friend of the family who works checkout at the Food Emporium grocery store on Broadway and 90th.  A few years ago she brought her car around, and she and E took him on a wild ride through Brooklyn and Queens to visit their families.  Abduction can be a good thing.

Then there was Jose, the handyman, who wanted to wish him a happy holiday.  And there might have been E.  He mentioned her, but he might have been referring to someone else.  Doesn't matter - the effect is what counts.  Hearing the story, there was a moment when I thought that we'd better leave him in the apartment, with all his friends around.  Then I thought, no, this really argues for the nursing home.  It's the stir of activity that makes the difference.  It's less important who the people are.

At the start of the evening there was a small kerfuffle.  The agency sent over two night attendants - the one who'd been there before, and a new one.  They'd ordered the old one back to 24-hour shifts, and onto another job, but she didn't get the message.  Once she saw the new attendant she went home, and the new one stayed.  She was good - engaged with him emotionally, which matters more than skill.  My father thought it was all an extension of the afternoon visits and kept on enjoying himself.

I gave him his presents - Christmas presents, as it happens.  This is part of a long story about a previous generation of New York Jews that I'll tell you some other time.  He liked the clothing and the chocolates (I went to Godiva and had them do a custom assortment of soft fillings so he won't choke).  He liked the books, too.  I stuck with my new program - picture books about things he likes.  This time it was collections of baseball photographs.  He was particularly taken with this one, since a lot of the players go back to his childhood, and some of them go back to his father's young adulthood.

I think he's losing the ability to work with books -  he doesn't understand how to use them.  He opened this one to the copyright page and stuck there, obsessively trying to read the data out loud.  I got him pointed to the photographs, which he didn't fully take in at first.  He locked onto the (long) captions and tried to recite them.  This goes with his current newspaper fixation, and seems to indicate that he's losing the ability to read.  This is a major loss, and he's fighting it - working hard to keep the capacity up, even though most of the words come out garbled and don't mean anything to him.

I got him pointed to some of the photos of players from the 30's.  At first he didn't seem to register the names.  But then he recognized Babe Ruth, unprompted.  Some things are hard to shake.  And there was a photograph of John McGraw, and I used that to remind him about how his father had taken his mother to the Polo Grounds on their first date, back in the Matthewson era.  He remembered that - and spontaneously recovered the story about how she'd bet my grandfather a necktie on the outcome of the game.

Then he got up from the table and went to the study and pulled one of his old sports magazines off the shelf.  I've written before about his editing the detective magazines and the men's adventure magazines, but the sports magazines were the ones he was really proud of.  There were four of them, all monthlies.  He enjoyed working on them - liked working with the two AP guys who wrote them.  He also liked to annoy my mother on a Sunday afternoon by announcing, "Well, I gotta go to work," then locking himself in with the NFL telecasts.  The sports magazines made me a big hero in my third-grade class - he used to donate free copies, and the teachers would use them for extra-credit reading assignments.

Now - on occasion, not as a steady thing - he'll go to the study and take out a copy of one of them and show people his name on the masthead.  I'm not sure it's a fully thought-out process - more of a physical gesture, the act of opening the magazine and pointing out the name (he finds it mostly by location on the page) that, taken together, means, "I used to be somebody."  A few months ago he knew what the magazines were but now when he shows them off it's a compressed piece of symbolism.

None of the memories lasted long.  When I talked to him by phone tonight he didn't seem to remember the evening, and he didn't remember that he'd had a visit from M this afternoon.  Nor did he remember who M was - another step downward.  But he seemed more relaxed.  Again, I think all the activity and attention made the difference.

Meanwhile the work goes on.  I've had my call with the elderlawyers, and between them and M I'm setting up referrals to lawyers and care managers in the DC suburbs.  Soon I'll have the New York and Maryland teams working with each other.  No remaining doubts about the nursing home move.  M told me that when she stopped by today, she met the latest day attendant - who doesn't speak any English and can't follow the medication instructions.  M said she got so frustrated that at one point she slammed her hand on the table.  My father looked at her and said, "Remind me never to get on your bad side."

A year from now - if there is a year from now (sorry, that could mean several things given the prevailing state of national crisis...)  Ah... where was I?  A year from now, I guess we'll be celebrating in some nursing home somewhere.  Or dealing with something else unexpected.  Whatever.  No need to rush there.   I'm sure reality will come rushing up and meet us at least halfway.

In the meantime I'm glad the holidays are working out for him somewhat.  I'm going to try to recover for a couple of days, then get back to case management, and go up again to see him for a pre-New Year's visit Monday.

Unless something else intervenes - in which case, I'll deal with that instead.

Have a good holiday.  Back soon.

Like There's Even a Choice

Of course I'm continuing to agonize over the nursing home decision.  Should I?  Do we have to?

And while I agonize...

Friday night he had me on the phone for an hour while he tried to read me the entire New York Times.  First he wanted to make sure I was up on all the stories about Washington - since I live there, they must be about me.  So he picked out every story datelined "Washington."  It made for a lot of stories.  Then he moved on to other stories that might be of interest.  The readings went like this:

What else do I have?  In the new room below, Washington here no room to cover it.  Do you want that?  Here no peer Washington ideal alive for a party the ball ball of power shifting in congray leaning of for price show up down in capitalist I-D-E-A-S up and away caround caround the business the day was apt to axe oh New York paper when people people ex at Washington to cow bust a minute station staking here similar now mike's away.  Did that help any?  Oh, I'm glad it is.  Because when it's Washington I want to give it to you.  See, the other one is high persons and high type men and women and houses and public type and houses and public painting one.  Two ladies and two women at a table, all sitting at a level. There's a big one, a man on his striped seats down on the left.

I finally begged off by telling him that the stories were really of interest, and he was doing me a really valuable service by finding them, and I had to go look at them in my own copy of the paper now...

Saturday night I called and found him in a titanic rage - raving and cursing in a high-pitched voice that he gets only when he's completely carried away by anger.  The first thing I heard was that "that BITCH works for your company and she works for my company and you've got to talk to your people and get her the hell out of here NOW!!!"

I managed to persuade him to put me on the phone with "that BITCH" - the latest in a revolving series of weekend day-shift attendants.  The situation, according to her, was as follows: she wanted to bathe him, and she'd been warned by her supervisors not to put him in the tub because he's paranoid about that.  So she decided to sponge-bathe him on the bed.  She stripped him naked and kept him that way for two hours while she tried to apply the sponge and he screamed and cursed.  But she was going to make sure she got him clean, she said.  "Otherwise, what will the other girl think of me when she comes in for the night shift?"

I told her - actually in a good-humored way, which surprised me because I wasn't feeling like that - that I knew she was obviously in a tough situation, but sometimes, like when he really fights you, you have to let him be right, and that's more important than getting him clean.

I then made a mental note to talk to the agency and demand her head on a plate.

Where do they find these people?  More to the point - what, if anything, do they teach them in training?  Is there any training?

Sunday he was still in a rage - same attendant, same reaction.  Except that when I talked to her this time, she mentioned that she was puzzled - just a moment before, he'd been talking nicely, showing her family pictures.  And now he was unhinged again.

This got me to thinking - the weird manic energy and the high-pitched voice and the abrupt mood shift from Friday to Saturday - it was just like the way he reacted back in '06 when the hospital staff put him on Ativan.  He'd had three solid days of paranoid hallucinations.  Here there were no hallucinations, but still - couldn't this be a drug reaction?  Dr. B had just prescribed Seroquel.  Maybe this is a Seroquel effect.  I did some quick Internet searching and came up with a bunch of hits for "Seroquel + Anger."

So I e-mailed M, then left a voicemail for M, telling her we'd better get him off Seroquel right away.

M called back.  Only one problem with my theory - he's not on Seroquel.  Dr. B wrote the prescription but M hasn't had a chance to get it filled yet.

"Damn," I said.  "And here I was so proud of myself - you know, detective skills..."

"I'm sorry to burst your bubble," she said.

She said she thought he was reacting to the complete loss of his dignity.

I agreed.

"I think we'd better get him on Seroquel," I said.

Which, of course, is not the solution.  The nursing home is the solution.

See, it's like this - you worry and you gyrate and you have hundreds and hundreds of thoughts.  Meanwhile, in a slow, grinding, relentless way, life is working itself out.  And then it presents you with the solution.  There's only one, because while you were sleeping - or whirling like a dervish - all the options went away.

We're going to the nursing home because his home situation has collapsed completely and there's nothing else to do.  He's out of control and his attendants aren't qualified to change bedpans, let alone manage an Alzheimer's patient.

So that was easy.

Getting it done won't be.  I talked to the lawyers Friday and I've got a huge new task list that I'll tell you about soon.

Right now I'm about to head uptown for the holiday visit.  I have presents for him - books he won't be able to comprehend and clothing that he'll piss in.  But it's important to keep up traditions and the ritual, and a little bit of festivity, might help him.  He was in a better mood when I talked to him late last night - the attendant was gone and he likes the one on the night shift - so I'm a little less in dread than I was this time yesterday.

I keep waiting for the excitement to die down.  I know it's not going to.

Onward.

 

 

No, It's the Nursing Home After All

Well, so much for12-hour shifts. Or at least, for thinking they were going to be the miracle that solved all our problems.

Short notes on a long week...

Tuesday afternoon, M took my father to visit Dr. B.  Routine check-up.  I had dinner with him that night.  Couldn't get a coherent explanation from him of what had gone on.  His speech is becoming profoundly incoherent.  At least half of each sentence is made up of random sounds and nonsense words.

New development: as usual, I called him when I was heading to the subway to let him know I'd be at his apartment in half an hour.  This reassures him, even though he can't quite grasp what "half an hour" means and, more and more often, asks me where we should meet.  Tuesday's call was according to pattern. But when I got to the apartment, he was startled - had no idea what I was doing there.  Obviously he couldn't remember that the phone conversation had taken place.  That's a first. 

Last night I phoned him and he asked if could come over to visit.  I told him I was back in Washington and he seemed annoyed.  "I guess we changed our plans, then," he said.  Maybe he was just counting on another dinner with me but I got the sense he couldn't remember the one from the night before.

Meanwhile, yesterday morning, the main event - a long call from M.  The headline: 12-hour shifts are nice, but... she and Dr. B are both adamant that he needs to be in a nursing home - now. 

Dr. B's take: the attendants aren't qualified to work with him.  He requires more management than he did a month ago, and will need still more in future (cf. incontinence).  She wants to try him on Seroquel to tamp down the anger and paranoia, and get him to sleep through the night (thankfully, she's strongly in favor of maintaining the 12-hour shifts so I don't have to indulge that paranoia).  She also wants the aides to manage him through a new fluid intake routine (no liquids after 5:30 p.m.)  Managing him through the routine and the meds requires skill, and the attendants don't have it. 

In addition, he's suffering as a result of the isolation.  In a nursing home, there'd be a medical staff to look after him.  And there'd be people to talk to.  Even if he's not saying anything comprehensible, at least there'd be an audience.

Dr. B asked M if she thought I was resistant to the idea of a nursing home.  M said she didn't think so.  I told M I wasn't resistant except for one reason - then quoted her the dollar figure I'll have to spend out before Medicaid starts to pay for his nursing home care.  She went dead silent when she heard it.  So I said, "But if that's what we have to do, we'll do it."  Which we will.

I said it very calmly and ever since then I've been so tense that it feels like my face is about to cramp.

It's not just the cost.  It's also the workload.  For a year or more, people have said to me, "Put him in a nursing home."  Which, of course, is the extent of their contribution.  Six words.  Unpack the six words and you get this: locate the nursing home, run the application process, secure a bed, arrange for an interstate transfer of Medicaid status (complete with a new application and a new financial submission), set dates, pack him and move him (I have nightmares about the road trip), close out his apartment, get his cats placed...  And deal with the month or two of income you've lost because this has been taking up all your waking hours and some of your sleeping ones, too...

M tells me that there are services that will help you shut down an apartment.  And that she has a colleague in Maryland who can work with her and with me to manage the applications.  And that I won't have to do it all on my own.  This is nice.  Better than it could be.  I'll smile about it as soon as I can get my face working again...

But look - it's not like there are any alternatives.  I'm busy agonizing over something that isn't even a decision because there are no options or choices.  It's all just going to be what it is.  For instance - I loved the idea of keeping him at home.  Even while I was talking with M, part of me was still thinking that maybe, once E is (re)certified, I can get her back on the case and have two other good attendants and get the home care situation fully straightened out and string things along for a while and keep him at home...

No such luck.  This morning M called again.  The agency called her and said that unfortunately, the very good night attendant (formerly the weekend) attendant has to leave the case because their rules won't allow her to move over to a 12-hour job.  And the pretty good day attendant asked to be taken off the case because she's too stressed (can't anybody here play this game?)  So they've got to start the staffing over again from scratch.  M asked if it would be possible to have E come in on a private pay basis, suspend Medicaid for 28 days, then get her her certification (training is scheduled for late January) and bring her back as a Medicaid attendant in February.  An agency attendant could cover the night shift.  Answer: no, because the agency tells us that if that happens, CASA could easily decide that he needs only overnight 12-hour coverage.  If we wanted to go back to split 12-hour shifts, we'd have to go through the application procedure again from scratch - with no guarantee that we'd get it again.

So that's not an option.

There are no options. 

We're doing the nursing home thing.

Looking on the bright side, the blog won't lack for content next year.

More soon.

I Think We've Got the 12-Hour Shifts

It looks like we've got the 12-hour shifts.

As usual, I backed into the news.  When I got to my father's last night, the current midweek attendant took me aside to say goodbye and tell me how much she'd liked working on the case.

I had no idea what she was talking about.

She told me that as of Friday morning, all the 24-hour attendants had been ordered off the job because the 12-hour shifts would be starting.

I said, "Excuse me?"

It's sort of like getting into college.  The first letter that came in was from the housing office, offering me a dorm room.  I hadn't yet been accepted.  But if I'd been rejected, would they be giving me a room?  Back then, I made an educated guess that I was in.

Since then, stranger things have happened, and I don't trust the way I used to.

So instead of celebrating, I sent an e-mail to M, asking her to get in touch with CASA and the home care agency and find out what the hell was going on.

I heard from her this morning.  She reports we've received "authorization" - apparently, that's the official CASA terminology.  Staffing does, in fact, change over on Friday morning.

There are still complications. (There are always complications).  The weekend attendant will stay on and do night shifts.  That's fine, because we like her.  The only problem is that it turns out she was the one who arranged a date with her boyfriend and went out to dinner while she was on duty.  M is going to have an unofficial conversation with her about that.  I want to keep it unofficial for now because she's very good in all other respects, and if we can warn her without starting the agency on a whole formal review process, I'd prefer it.  With luck it'll be enough to let her know that we're watching, and keep her on the job.

Then there's the matter of E.  (There's always the matter of E).  The original goal of our petition for 12-hour shifts was to fold her back in (that and the fact that my father really needs round-the-clock attendants who are awake all the time).  Unfortunately, it turns out that her home health aide certification was issued by an agency that's gone out of business.  Nobody can trace the certification.  That means that she'll have to go through a two-week training process with the current agency.  If she does, we can put her into the rotation.  If she can't, then we can't work with her.  I hope she's willing.  With it all, that'd be a best case.

Finally, there's the question of meds.  The authorization is provisional - it can be reviewed and revoked at any time.  I still suspect that CASA would prefer to tranquilize him, put him down for the night, and then go back to the less-expensive 24-hour staffing.  I'll talk to Dr. B about it in advance of his appointment withher next week.  Where I'm coming out is this: I'm fine having him medicated if Dr. B thinks it'll actually be better for him - calm him down and get him to sleep and such.  I'm against it if the reason is to make him more manageable and less expensive to care for.  I'll try to make her aware of the parameters, then trust her judgment.

Now that I've got all that out of the way, I'm willing to celebrate, or at least to let out a small sigh and decide that for once, we seem to have accomplished something.

Meanwhile, his situation is what it is.  Incontinence continues to progress.  Short-term memory took a big downward lurch between last week and this week.  Last week I called him mid-afternoon, then went up to visit in the evening.  He was upset because I hadn't called for several days.  This week I called him mid-afternoon and I went up to visit in the evening.  He was astounded that I'd showed up out of the blue because he couldn't remember that a phone conversation had ever taken place.

He was also confused because he expected Alan, the little child, to show up, when it fact it was Alan, the 48 year-old guy with the beard who came through the door.

He seemed vague and was less reactive as the evening went on.  I left a little earlier than I usually do.

All of that will continue.  But if we can (finally) get his home care establishment in shape, then it's been a good week's work.

Shell Games

Something new to do while waiting for a verdict on the attendant coverage - figure out how to use the community trust.

The community trust is an interesting mechanism.  It works like this.  You know how, under ordinary circumstances, my father would get income (from social security) and I'd use it to pay his bills?

Well, instead, I now contribute his income into the community trust - and then use it to pay his bills. 

It's an almost perfect shell game.

It came about for this reason: Medicaid sets a cap on the amount of income you can earn and still qualify.  This makes sense because Medicaid is, fundamentally, a program for people of limited means.

Nevertheless, Medicaid decided it would be worthwhile to establish coverage for people who would otherwise qualify, but whose income exceeds the limit.  They created the community trust system.  Community trusts are private nonprofit organizations into which you deposit your excess income - in this case, a few hundred dollars a month.  The trust then puts the money at your disposal to pay your expenses.

In other words, the money does exactly what it would have done before, except that now it moves through the trust.  Thanks to the trust, you can earn in excess of the Medicaid limit, and still use the money exactly the same way.

I say the shell game is almost perfect because no shell game is perfect - and in the Alzheimer's/Medicaid universe, nothing really seems to work.  In fact, paying bills through the community trust is a complex, burdensome, mostly dysfunctional process that makes you wonder whether you even want to bother, or if you'd rather send the excess income over to the home care agency as a surplus payment, which which is, I gather, what normal people do. (An aside - the home care agency is in fact billing me for the surplus.  The lawyers tell me that since I'm in the trust, I don't have to pay them.  We'll see).

I'm now in my second month with the trust.  I think they've paid a Con Ed bill.  I'm not sure, because their statements lag several weeks behind.  What I do know is that for every step it takes to pay a bill by normal means, the trust requires six.  Bills to be submitted with client number marked. Bills to be itemized in separate cover letter.  All credit card bills to be accompanied by store receipts.  Bills in excess of $1,000 to require approval by the board, to be requested in an additional cover letter included with the first cover letter.  Requests for rent reimbursement to be accompanied by New York City Rent Stabilization paperwork - every time you submit a rent bill.

M is justifiably pissed with me at the moment because I submitted her October bill (which was in low four figures) without noticing the board approval requirement.  I withdrew it, but I lost two weeks.  I'm now trying to find out the status of her November bill - which I submitted according to spec, complete with board-approval-requesting note.  I don't know the status because the trust seems to be run by well meaning, overwhelmed people in Brooklyn who send their phone calls into voicemail and take days to get back to you.

Doesn't matter.  I'm sure I'll figure it out.  I can't complain too much because this particular trust seems pretty relaxed - for example, about the length of time the money stays available before it rolls into the community pool and you lose access to it (community trusts are also called "pooled income trusts" because the funds are eventually supposed to move from your account into a general one that helps people in need).  Apparently, in our trust, the money stays available to you until you die.  I could swear that in the other trust (the one that wouldn't accept us because it didn't recognize my power of attorney), the money rolled out at year-end, or after a period of months.

I'm not sure, because I'm new at all this.

But it's nice to have the distraction - and the excitement! - of trying to figure it all out.

Beyond that, there's the strangeness that Medicaid would actually set up the trust mechanism - and the question of whether it should.  It's odd on the face of it for an agency to create - deliberately - a loophole in its own rules.  As I was given to understand it (not sure if this is correct - it was a quick conversation with a lawyer), Medicaid set an income limit that it then decided was too severe.  It couldn't easily back away from the limit, so it created a back door that allows people to bust the limit and stay in the program.

I'll let you know shortly whether the've done me any good or not.  In the meantime, in spite of all the frustrations, I'm enjoying the process, if only for this reason - my father is angry with me because I'm not bringing my son Alan along on tonight's visit, and managing the trust helps take my mind off the anticipatory stress.

Wrestling with numbers is a comfort - compared, at least, to wrestling with everything else.

Is it a Crisis or a Drama?

I had a mentor who used to ask that question when corporate clients showed up on the doorstep, screaming and thrashing about the crises they were in.

The question means: Is this really putting you at risk, or is it just causing lots of distress and excitment that won't necessarily lead to any consequences?

I've been trying to apply it to my latest CASA crisis... ah, drama... ah, not sure which it is. 

Which is why it's worth asking.

Separating out the threads... all I really know is that a CASA supervisor talked about medication.  It's not clear that there was any intent behind the interest.  I expect the worst from bureaucracies, and usually I'm not disappointed.  But do I actually know that she was leading to a particular conclusion?  No.

Since then, M has talked to three or four or five other CASA people.  At minimum, it seems there's divided opinion.  A CASA physician (well meaning, spoke little English, possibly East European) asked M if she, M, recommended meds.  M had to explain that she isn't a doctor and couldn't say.  Someone else at CASA said that it's highly likely they'll approve the 12-hour shifts - at least on a provisional basis - no matter what's decided about meds.

I still think that the supervisor meant to consider meds as an alternative to more coverage.  But I'm still guessing.  And her vote may not count.

There may even be reason to consider meds.  I'll let Dr. B tell me that.

Best, I suppose, to stay calm and wait.  I'm not good at either of those things.

But it's never too late to learn new skills.

CASA's Take: Why Care for Him When You Can Drug Him?

Two calls this morning from M.  In the first one, she told me she'd heard from the home care agency that we were on the verge of approval for a change to split 12-hour staffing.

In the second, she told me she'd just been roundly yelled at by the CASA supervisor.  CASA, for those of you just joining this exciting trip, is the Community Alternative Systems Agency, the New York City agency that provides my father's care under Medicaid.  The home care agency I mentioned above - and I'll name it shortly - is a private for-profit that provides attendants under contract to CASA.

The CASA supervisor was enraged for several reasons.  The first one is that there's no bed for the attendant.  That's true.  We've been using a pretty expensive, high-tech air mattress because 1) we've been expecting the change in staffing and 2) my father is already experiencing the air mattress as major evidence that his home has been invaded.  Of course I was planning to provide a bed if 24-hour shifts became permanent, but based on what we were hearing it made sense to hedge.  For the record, there's an open bed next to his in the bedroom, and a very large sofa in the living room, too.  Final mitigator - no one told us at the outset that a bed (as opposed to a sofa or an air mattress) was required.  We only found out about it two weeks ago - when the application for the shift change was already well along.

Well, the CASA supervisor insists on a bed - now.  The reason for this is she doesn't anticipate 12-hour shifts anytime soon - if at all.  The reasoning?  It's a thing of beauty.  It goes like this.  We asked for 12-hour staffing because he's up at night, right?  And also he's started to wander out of the apartment, which is a safety risk.  So an attendant on a 12-hour shift - who'd be awake, since there's no sleeping allowed on the split 12-hour schedule - could keep an eye on him and keep him safe.

On the other hand, why not drug him?

The supervisor wants to know why he isn't on medication that would help him sleep at night.  M told him that we're scheduled to take him to Dr. B on December 16, and we were planning to raise the question of sedatives or sleeping pills then.

Fine, says the supervisor (in effect - I have all this at second hand).  We won't make any decisions on the 12-hour shifts until after he's seen the doctor.

Do you see where this is going?  I do.  I've been in it long enough to have arrived at a highly developed - and usually accurate - sense of paranoia.  Where it's going is this: they're not going to approve the expanded staffing because it's cheaper to pump him full of drugs and keep him passive all night.

And maybe all day, for that matter.

And if he's sufficiently drugged, it probably won't matter that his case is staffed by this bottom-of-the-barrel contract agency - the one that, in a three-month period, has sent us an illiterate, a criminal who stole his credit cards,  two people who were remanded for further training and another who had to be thrown off the case after she cursed at him, told him he stinks, and tried to force him physically into the bathtub.

This, friends, is the Alzheimer's care system at work.

Conclusion: he's going to a nursing home. 

See how the really hard decisions turn out to be unbelievably easy when you get to them?

I'm going to start the paperwork this weekend.

Projects for 2009 - get him a placement, move him there, close his apartment, place the cats...

Oh, and make a bunch of these people famous.

Yes, that's right.  Like I said, I'm on the brink of naming names.  Maybe I'll think better of it after I cool off.  If I cool off.

But as of today I'm starting a new career as an Alzheimer's advocate.  And I think in the service of that, there are people and organizations that need recognition.  I'm inclined to help them get it.

Because otherwise, people are just going to have to put up with this kind of thing.  And people without access or skills or resources are going to put up with it quietly because they won't even know there's an alternative.

There's going to be an alternative.

Plenty of work for us all before long.

Toward the Nursing Home Decision

On the way uptown last night I decided I wouldn't bring up his possible move from Atlantic Beach (New York) to New York (the DC suburbs).  I wanted to see if he'd mention it, or if he'd let it slide.  Took him a while - about 45 minutes - but he got to it.  It's definitely on his mind.

As usual I'm having a hard time figure out how he feels, or what he wants.  He talks about the benefits of having a smaller apartment that would be easier to take care of, and where there would be people around, and where he'd be able to visit back and forth with my family (me, my three wife/cat/daughters, my little son Alan).  All of that argues for a nursing home in my neighborhood.  On the other hand, he talks about wanting to stay close to his physicians, and to be able to go out and walk on Broadway or sit in the park.  That might argue for keeping him in New York with aide care and services.  Of course, it's not clear he knows who his physicians are - you could introduce him to the nursing home medical staff, and he'd be fine with it.  And as to geography, any walking path could be Broadway at this point and any copse of trees could be the park.  His sense of place is so deranged that you can't really work with it.

Essentially he's referring to emotions, not places - the apartment is loneliness and neglect, a different place would be welcoming and engaging and more home-like.  On that basis it feels like we're heading for the nursing home.  I'm still going to hold off for a couple of weeks.  If our applications go through and we can get E back in, he might feel more at home (so to speak) where he is.  He said he doesn't want to move to New York until the summer season.  That's hard to read because earlier, he was telling me that it's lonely at the beach during the winter.  Maybe he's confusing the words - summer and winter.  In any event, it means I have a few months to work with.  I told him I'd want to find the best place for him, and that could take a while.  If he remembers, maybe he'll be patient - relatively so, at least.

Over on the Alzheimer's Association Caregivers Forum, I've raised the question of how you make the decision to commit to a nursing home. What factors do you consider?  As usual the replies are extremely helpful.  Seen from another perspective they're extremely depressing, because - yet again - they illustrate the complete lack of a healthcare system, and the fact that we're all out here improvising in what ought to be a serious, and seriously managed, professional arena.

In the meantime I have new entertainments.  When I was leaving his building, I stopped off, as I usually do, to talk to the woman who works the front door on weekday nights. I like her and I trust her and I need eyes on the ground.  A few weeks ago, she was the one who told me that he'd been taking the elevator down to the lobby to check the mailbox while the attendant slept.  Last night, she told me about the attendant who'd had a visit in the apartment from her boyfriend, and then they'd gone out to dinner for an hour together, leaving my father alone.

Something new for M to run down.

Isn't it nice that she never lacks for things to do?

Nursing home, anyone?

 

Post-Thanksgiving: Back in the Alzheimer's Groove

Was fully back in the Alzheimer's groove on Monday (in some sense I never left, but you know what I mean) and am in New York today for another visit.

A few quick updates...

Monday morning he had yet another Medicaid assessment visit.  This one was in support of the new M11Q that requests a change to split 12-hour shifts.  M reports it went well.  There'll probably have to be a physician visit, but we're promised a verdict within two weeks, sooner if possible.

Monday afternoon E called me and asked me to lobby the agency to get her fully approved.  I'll do that as soon as the shift change is fully approved, assuming that actually happens.

He's got another new attendant for the Monday-through-Thursday tour.  He really likes this one.  M really likes this one.  This one really likes him.  The catch?  She has cat allergies.  She's going to see if she can tolerate the cats somehow.  I recommended Zyrtec (works for me).  But I'm not optimistic.  Feels like this team can't catch a break.

On the phone last night he was unusually lucid - right up 'til the moment when he asked if I'd be bringing my son, Alan.  "People really ought to meet the little guy," he said.  I told him it'd have to be just me, what with school being in session and all.  Am not sure what I'll do during the Christmas-New Year's break - count on his time disorientation, maybe?

He told me last night - and repeated this afternoon - that he wants to talk to me at length about moving from Atlantic Beach (New York City) to New York City (a nursing home?)  If he remembers, that'll be tonight's main event - unless something else comes up.  I'll try to listen for cues and if I'm lucky, I'll get a sense of what he's really feeling.

Between now and New Year's, some or all of this will be in play.  We'll find out about the shift change.  We'll find out about E.  If we get both, then the nursing home is an option but there may be good reason to keep him where he is a while longer.  If we don't, then the nursing home is a necessity, and I'll pull out the application and start working on it.

It's always good to have a way to keep busy during the holidays.