Dementia Nights

Things Fall Apart in New York, and Nursing Home 4

The situation in New York is coming apart quickly now.  My father reportedly had a bad few days over the weekend and at the beginning of the week.  On Monday, for some reason (or none), he threw his meds at one of the attendants.  Tuesday morning he was due at Dr. B's.  E and M had a hell of a time getting him there.  Dr. B immediately doubled his Seroquel dose (to 100 mg this time?  I'm losing track).  Yesterday night, during our one-hour-plus phone call, he was intensely paranoid but relaxed and dreamy at the same time - strange, but that's usually how the Seroquel plays out.  In a quiet, drawn-out, languorous way, he went on about the horrible people in his apartment - "the women" (he also called them "niggers" at one point, totally uncharacteristic but character really doesn't apply here anymore).  He told me that on Tuesday morning, one of them had made him so angry that he grabbed her, pushed her backward over his knee and threw her to the ground.  Of course nothing like that happened.  His fighting delusions (often elaborate, involving eight or 10 people) typically happen during his hospital stays.  This is one of the first at home.  Seroquel again.

E and M wound up at loggerheads during and after the doctor visit.  M wants E to be more interventionist - get my father outdoors more often, for example.  I agree in principle but had to remind M that even when he was whole, my father was the most stubborn man in creation.  Getting him to do anything he doesn't want to do is nearly impossible, and the usual techniques (distraction and redirection and such) often don't work.  Flexibility is key.  Case in point - E was getting him ready to go downstairs and get into a cab, and my father didn't want to put on his street shoes.  E took him to see Dr. B in his bedroom slippers.  M objected.  I understand, but I have to side with E - what difference does it make, as long as he's not barefoot?  Opting for slippers is the kind of improvisation that they talked about at Nursing Home 3 - a necessity, I think, and the main reason why, right now, they're at the top of my list.

As far as the nursing home list is concerned - I'm getting to the end of the first round of the search.  Tuesday afternoon, in between trips to a regional vet to deal with a Bombay cat with MRSA (life is complex), I was able to visit Nursing Home 4, which was nearby.  It's owned in common with Nursing Home 3, through some arrangement that I don't understand.  I liked it.  Very nice physical space - grounds with sitting areas and nature trails that the patients get to use, a small aviary in the lobby.  Good atmosphere - more visitors than I'd seen at the others, though that could be accidental.  The tour was less satisfying - given by an admissions person in a uniform of the kind you'd see on hotel staff.  She was fast and glib and had me in and out in half an hour.  I suppose I shouldn't put too much stock in admissions people - how much contact with patients are they going to have?  On the other hand, the depth of the discussion at Nursing Home 3 continues to impress me - it was a whole different quality of interaction, and that has to count, too.  So for the moment, Nursing Home 4 stays in play, but Nursing Home 3 is still at the top of the list.

On reflection, I've decided to rule out Assisted Living Facility 2 - the fact that they don't take Medicaid is a problem.  I could gamble on his dying before he'd need Medicaid coverage, or on being able to transfer him later to a Medicaid facility, but neither seems like a good option.  As for Assisted Living Facility 3 (note to self - they're really group homes, and I should start calling them that)... I spoke to someone who told me that I'd have a better chance of reaching the admissions director if I called him on my cell phone.  I haven't tried him yet.  There's nothing wrong with being given a cell phone number, but there's something about it that reminds me that the group homes are small, quirky establishment, mostly run by founder-owners.  I'm not sure that that's going to give me what I need.  I suspect at the end of the day I'm going to opt for one of the nursing homes, but the question is open for now.

Today I sent an e-mail to D, the Maryland care manager, giving her a quick rundown of my initial impressions, and asking whether she'd be willing to meet with me and give me a reality check before I start follow-up visits.  I don't know if she'll bite, but my sense is that an objective conversation with an outsider would be helpful at this stage.  Elsewhere on the research front, Dr. C, the friend of a friend who's an emergency physician, tells me that Nursing Home 1 has a terrible reputation.  I didn't like it much, either, and it's good to have a gut impression confirmed.  Unfortunately, it turns out that Dr. C is based in the Baltimore area, and doesn't know the facilities in the DC suburbs that well (Nursing Home 1 is run by a chain, so it's a different animal).  He promised to check, but I don't know what he'll be able to find out.  Still, every insight helps.

I didn't visit New York this week.  Multiple reasons - cat care requirements (I have to administer meds five or six times a day, including at oh-dark-hundred), the fact that I've got to push through the nursing home search, and also the fact that I needed a break.  The New York scene is getting to be too much, which is one more reason why I've got to get the search concluded, start an application, and do the transfer.  It's all overwhelming, but as long as I'm getting overwhelmed, I might as well be overwhelmed in the right place for the right reasons.  I could say something cheap about my father going south, but I'll let that go... for now, at least.  But I'm sure the thought will surface again soon.

Becoming an Orphan

Visited today for the first time in two weeks.  Heavy deterioration.  He's dissociated from his hands and feet.  He tried to give me one of his hands to take with me (he wanted to lend me a hand, yes, good line, et cetera, et cetera...)  Backstory: E had apparently treated his hands with some kind of lotion.  He enjoyed the sensation and enjoyed that they were soft afterward, and this was how it came to him to share the experience - "Here, would you like one?  Take it!" 

Later, he was lying on his bed with a cat to his right, and he said, "There's a baby here (cat name: Babe) and there are two feet here, so everything's where it's supposed to be."  Then he got alarmed about the television.  It was showing a sports news program on SNY and the stream of images was too much for him.  He told me there was something wrong with the set - "it's all clouds coming up" - and he didn't know what he'd done to mess it up.  Then he got upset because I was sitting on the bed next to him and he could hear me in his right ear, but he could see me only in the mirror, and the spatial situation didn't make sense to him and he wanted to know where I was.

We're finally getting into classic Alzheimer's symptoms.  A couple of weeks ago he looked at a childhood picture of me and asked who the fat guy was.  Last week, on the phone, I told him I was down in Washington, where he'd been when he was in the Coast Guard, and he said, "I was in the Coast Guard?  I don't remember that at all."  I talk to him by phone less often than I used to - at least half the time, I can't get through to him, because he insists on carrying the cordless phone around with him and punching the buttons obsessively.  The phone is off hook and the batteries die and all I get is a busy signal.  Today when he started punching at the phone, I gave him a spare receiver that wasn't connected to anything.  One of the attendants had found it in a closet and given it to him to try to distract him.  It's not very satisfying for him because it doesn't make any sound.  Maybe there's some sort of play telephone I can give him that'll generate beeps or a dial tone or something.

I had lunch with him as usual, and a half hour later he was anxious about whether I was hungry - couldn't remember the meal.

It occurred to me the other day that I don't really have parents anymore.  This is a new thought, though I have to admit I'm surprised I didn't get to it sooner.  My mother died in 2003 and that was clear cut. My father's been disappearing for a while, but even recently, there was still a person there who retained some history and you could relate to him.  For example, he'd ask me about work and of course I'd have to prompt him and help him along, but at least at the end of the process I could get across something more or less factual.  It's only in the past two or three weeks that I've discovered I can't do anything remotely like that.  He'll still ask how my work is going, but he also has to ask what my work is and it's clear that the explanations aren't getting across.  Stray bits of memory and identity turn up - today he almost remembered me as an infant (that is, he remembered being able to hold me in one hand) but couldn't connect that to the full experience of being a father, and in the next couple of sentences talked about how he'd adopted me and how we'd met during the war and how I'd been a friend of his for a long time - since our mother was alive.

There's nothing extraordinary about any of this (note to new readers: as I try to say often, there's nothing extraordinary at all about anything I'm describing on this blog).  And I don't mean to sound self-pitying about it because I don't feel that way.  It's just a new set of facts to deal with.  But it's a little jarring to realize that until very recently, even with all the damage he's taken, there was still a father-son relationship in play and I still wanted to talk to him about work and life and current events and things like that.  The idea that I can't do that at all is new and I'm just beginning to get my mind around it.  He's suddenly no longer a cohesive person I can identify as my father.  I still matter to him and I have obligations to him (in fact there's an extraordinary amount of work to be done) but that's not the same as having a human relationship with all or most of its features present.

We were a very small family.  I was the only child and there were blood feuds and estrangements with all of the other relatives, so my mother and father and I were nuclear in the purest sense.  I guess that's over.  Fine - lot of orphans around, so what's one more?  The only strangeness here is that one parent is dead but I still have to visit him and work with him and manage his Medicaid paperwork and pay his bills.  All of which is a sort of Alzheimer's cliche - people in brochures call it "the long goodbye" and such - but living the cliche is its own kind of weird. 

A related thought, about the blood feuds - you want to go back in time, knowing what you know now, and shake those people, not just the relatives, my parents too, and tell them to get over it fast because what's coming is truly awful - the cancer and the Alzheimer's and lots else because all of them had really bad experiences at the end.  I'll expand on this at some point.

Dwelling on it is pointless of course, but the idea that in spite of still having to care for him I'm an orphan is novel, at least to me, and it wanted to be shared.

I heard today from Assisted Living Facility 2.  They don't accept Medicaid, and that may rule them out, but I still have to do the math - their run rate is lower, and it's conceivable that that he could live to the end there on private pay.  I'm not sure that I want to make that actuarial bet, though.  There's one more ALF still pending, and I'll make one more attempt to contact Nursing Home 4 before I give up on them.  After that I'll be at the short list, and I'll sit down with D, the Maryland care manager, and start sorting through the options and the costs.  Philosophy is nice but the workload is where I left it, and the task for July is to push through it and start an application.  More updates soon. 

The Tour Continues: Assisted Living Facility 1

Continuing the research... yesterday afternoon, drove to Assisted Living Facility 1, a small group home (15 beds) in a quasi-rural section of the Maryland DC suburbs.  Am not sure what to make of it.  There were several attractive features - in particular, it doesn't feel like a hospital.  Nursing homes, no matter how you dress them up, feel like hospitals.  This was more of a bed-and-breakfast.  Much more relaxed and home-like.  So - is it better to put him in a bed-and-breakfast of death, as opposed to a hospital of death?  Hard to say.

Apart from the obvious advantage (he might take to it better), there was something about it that left me uneasy.  The home, along with its four sister homes, is run by a founder-owner.  Let's call her Mrs. Q.  Mrs. Q, who was a half-hour late to our appointment, is a very quiet, very charismatic figure.  She's an emigre - was a professor at home, but couldn't find a matching job here and started the homes out of a sense of mission.  Extremely dedicated and quite serious.  She seems genuinely devoted to the work and the patients, but there was something generic about her answers - she talked about the need for flexibility but, unlike my tour guide at Nursing Home 3, didn't illustrate or demonstrate any.  Strict rules - there's a sign on the door that tells you not to visit if you're coughing or sneezing; no animals allowed indoors since patients might trip over them.  Sensible but very cool and very cautious.  Baroque music playing over a sound system all the time - she says it calms the patients, which makes sense to me and seems innovative but also easy and low maintenance.  The staff are reverent about her - they talk about Mrs. Q in a hushed way ("I'm sure Mrs. Q will be along soon to meet with you").  There was something faintly cult-like about it.  When I left, I found her enormous black Mercedes parked next to my car.  Nice ride, and I'm sure she works hard and she's entitled to travel in comfort.  But there was that cult thing again...

She's a strong advocate for assisted living as opposed to nursing home care.  At one point she looked at me significantly across the table and said, "Wherever you decide to place him, don't place him in a nursing home.  I don't know how you feel about directness but I'll tell you directly, if you put him in a nursing home he'll be dead in six months."  She may be right - but it also seemed over the top.  Of course, there's also the perverse part of me - the part that's beyond the end of its rope - that wanted to jump up all eagerly and say, "Really?  You promise?"  But I had the sense it wouldn't be a good idea to try that angle.  No appetite for black humor there, or for other shades of humor, now that I think about it.

I don't know.  She's not wrong - I'm worried about how he's going to react in a nursing home when he's not caught up in group activities and he's just in his room in his hospital bed with all the other inmates parked in the corridors.  The group home was more like a home, or at least a decent inn.  I'd rather live in surroundings like that, and he probably would, too.  As to the number of patients - a small setting could be an advantage or a disadvantage.  Will he be overwhelmed by all the faces in a nursing home (Mrs. Q suggested this) or irritated by confinement with just a few people in the group home, like one of Browning's monks? 

As to quality of care, the group home is surprisingly capable.  They can handle anything up to acute intervention - if he needed a ventilator, for example, they'd have to relocate him to a nursing home, but in the absence of that, he could live in the group home all the way to the end of his Alzheimer's.  People do.  They have a hospice relationship, so he could transition to hospice in place.  Costs are lower - and yes, that's still a consideration.  On the other hand, if he winds up bedridden and in need of heavy nursing care, we'd probably have to look at nursing homes, so I'd be moving him in two steps instead of one.

Bottom line is, I like the idea of a small group home, but I'm not sure about this particular one.  I have two more to see, and one more nursing home, and then I'll have finished the first round of the tour.  Maybe somewhere along the line I'll find the same originality I found at Nursing Home 3.  As of the moment, I'm more open to assisted living than I expected to be.  But Nursing Home 3 is still in the lead.

"And Then the Baby Llamas Came to Visit": Nursing Home 3

Had a few interruptions this week - dental surgery, sick cat (three late-night hospital runs, doing better now)...  So didn't get back on the nursing home circuit until this afternoon.

The target for today - Nursing Home 3, a 150-bed private, for-profit facility in Rockville, MD, located a few hundred feet from Nursing Home 1 (am still wondering why the huge concentration in nursing homes in this particular neighborhood).

I don't want to get ahead of myself and I need to submit everything to hard skeptical testing, but this one felt much better than the others.  It wasn't the physical plant - as far as that's concerned, the more I see these places, the more alike they seem - though Nursing Home 5, the big 500 bed factory, is an exception.  No, the difference was the staff - in particular the admissions person who gave me the tour.  Completely different conversation than the others I've had.  Went on for 90 minutes, about two or three times longer than average.  And in contrast to the generic, "here's the locked floor" tone of the other visits, had a lot to do with the specifics of Alzheimer's care.  I liked what I heard about their approach, which seems to be flexible and intuitive in a way the others aren't.

Examples: she told me about a patient who used to be an accountant, and was perpetually anxious because to her, every day was tax season and there was work to be done.  Admissions Person says she went out, found a printing calculator in an antique shop, and gave it to the the patient, along with legal pads and a ledger book.  They set her up outside her room so she could work over her numbers.  The numbers didn't mean anything but it kept the woman happy.

Similarly: there was a man who decided he'd only shower at 10 a.m. Friday.  The staff got together to change his clock whenever they needed him to bathe.  Then there were the groups of patients they take outdoors on the grounds (this happens several times a week, unlike the once-a-week routine at Nursing Home 5).  Several of the patients decided they wanted to lie down in the grass - it felt good to them.  "At first the staff wanted to get them back up into their chairs," said Admissions Person, "but then we decided, what's the harm?  The only problem was that there were a couple of the patients who wanted to eat the plantings.  So we tore up the plantings we had and put down parsley."

She described another patient who waited anxiously every day for her husband to come home.  The husband had been dead for 20 years.  The daughter would visit and say, "Dad's not coming - he's dead!"  "I told her, 'Let's try something else,'" said Admissions Person.  "The next time it happened, we told her, 'He just called and he said he's going to be late - why don't we wait inside?'  That calmed her down and then she got distracted by other things.  The daughter was upset because we weren't telling her the truth.  I said, 'What's the truth?  What does it matter what's the truth to you?  What matters is what's the truth to her?'"

I liked this because it feels like what I try to do when I'm working with my father.  J, my original social worker, used to describe it as "meeting them where they are."  This works because the situation with an Alzheimer's'rs patient is always changing and you have to move to meet it.  If you get too caught up in consistency or in managing your system, you lose that.  You may be very good at healthcare but your approach gets rigid.  The priority becomes what's good and efficient for the institution, not what's good and appropriate for the particular patient. 

There were other signs that the approach here is progressive.  Activities are mostly short-duration (15-minute) exercises that rely heavily on aromas and music to stimulate memory and emotion.  That shows a better-than-usual understanding of brain physiology and how to work with it. 

Then there were the llamas - baby llamas that were trooped in as part of a regular animal visiting program and were apparently a big hit.  "We'd just put in a bunch of hand sanitizers and all of a sudden, in come these llamas and they've got the fluttering split lips and they're kissing everybody and I'm wondering, what germs are we bringing in?  Then I decided, what does it matter?  There's no infection we can't deal with, and look at how the patients are enjoying themselves..."  When she told me the story I was thinking about Nursing Home 5, where they insisted I use the hand sanitizer every time I went from one building for another.  That's a very sensible precaution but maybe you lose something else on the way...

There are several resident animals, and there's even an outside chance that I'll be able to relocate one of my father's cats with him.  That's a huge thing, both in itself and because, as some of you know, I've been completely hung up on the question of what to do with the cat, which I don't want to leave behind.  Without my realizing it, the cat has become a kind of litmus test for the nursing homes I visit - you talk to them about the cat and you find out whether they really get the emotional impact of Alzheimer's's, and whether they can bend or not.  This one can.  So for that reason in addition to the obvious one that maybe I can avoid breaking up the family, I liked the answer.

Admissions Person tells me she was an Alzheimer's caregiver, for her grandmother.  Makes sense.  She gets things that you'd only get if you'd spent time dealing with Alzheimer's on a personal level, where you have a stake in the outcome.  Which suddenly suggests to me that part of what I don't' like about the staff at the other facilities is that they're dealing with Alzheimer's on a professional level, as set of interesting challenges or maybe just a piece of work to get done.  There's a difference.

Now, it's conceivable that all of this - the calculators and the parsley and the llamas - are all a bunch of gimmicks (in the way that the relentless march of the hand sanitizers at Nursing Home 5 seemed like a gimmick - an easy placeholder for conscientiousness, rather than the real thing)...  and the quality of care isn't that good.  It's also conceivable that I met an exceptional person, and the rest of the staff won't measure up.  So no decisions yet.  I still have another nursing home to see, and three assisted living facilities.  After that there'll be repeat visits to some of the homes, and the Maryland Health Commission statistics to go over, and lots of hesitation and second thoughts before I commit.

But I will say this - today, for the first time, I felt as though, if I have to set fire to all my father's assets, at least in a place like Nursing Home 3 there'll be some value in return.

About the decision-making process, credit here to Shu, who nailed it in a comment the other day:

You'll know what's best for the situation after you've visited a few places and feel where you are instinctually drawn. You'll possibly be surprised at how quickly you have your own inner shorthand about you rank them.

Seems that way.

Now, with all that said, I need to put all the good feelings aside and stay critical and continue the search.

More next week.

Nursing Home 1, Nursing Home 5, and Medicaid Again

Two nursing home visits today, as it turned out.  Nursing Home 1, as scheduled, and then Nursing Home 5, which called this morning and was willing to set up a visit for early afternoon.

I liked them both better than Nursing Home 2, but I'm not sure yet how to compare them to each other.  Both seemed positive but there approaches are very different.  It'll take some work to figure out how they rate.

Nursing Home 1 is an averaged-sized facility - about 100 beds.  Farther from me but not far - about 15 minutes away via Interstate.  The admissions person who gave me the tour is a social worker, and she seemed to have a better handle on patient care than my guide at Nursing Home 2 the other day.

When you walk in the door, there's a big communal area - a lounge and a dining room and a skylit atrium that all blend into each other.  Lots of patients in view, staff having meetings and discussions mixed in with the patient seating.  Seemed relaxed and natural.  This is apparently how they handle things - they like to promote a lot of interaction.  There are no dedicated Alzheimer's units and no locked floors - dementia patients intermingle with everybody else.  They have private rooms but discourage using them - Admissions Person said they find people do better in company than in isolation. 

There are nice grounds (Interstate in the distance, but well screened).  They seem to make an effort to get patients out of doors, which is a nice touch. 

Admissions Person and Business Office Person were good about answering my questions and drawing out information - felt like a much more substantive discussion than the one on Wednesday.  Business Office discussion included details on the application process for Maryland Medicaid - more on that below.  The information kit also included the results of a survey by the Maryland Health Care Commission (naturally Nursing Home 1 comes out well, otherwise they wouldn't be distributing it).  The commission, by the way, publishes a set of guidelines and statistics about nursing home quality, which are going to be useful when I get to the short list. 

In the parking lot, where I was reading the survey and the price lists and looking like a newbie, I was interrupted by a woman who'd just picked Nursing Home 1 and was moving her mother in tomorrow.  She was dropping off some household objects to make the room feel more like home.  Had good things to stay about the staff and the quality care, though she'd also made the choice partly for geographic reasons.  Still, my first live endorsement, which is a good indicator.

After a break, over to Nursing Home 2, which is just up the street from me, about five minutes away (side note - the entire area is crawling with nursing homes - not sure why). 

Nursing Home 2 is an enormous machine - four or five times more beds than the other homes I'm looking at.  It's run by a local Jewish charity and it's been around for decades.  Has a terrific reputation - it gets written up in all the local magazines - though D says she's had both good and bad experiences there.

Because of its size I was prepared to dislike it, but didn't.  It does feel more like a hospital than any of the others - and in fact has its own physicians on staff, and hospital-sized nursing stations on each floor with a full hospital-style staff complement.  But surprisingly, it didn't seem impersonal.  There was a good level of interaction among staff, and between patients and staff.  My tour guide - in this case called a marketing person, which is a little unfortunate - has a patient care background and kept interrupting the tour to talk to patients, and occasionally to head off to the nursing stations to get them attention when they needed it.  The downside of this is that there were a lot of patients in distress and vocalizing about it.  In that respect the place did seem more like a hospital - which means that I have to spend more time reviewing the staff-to-patient ratios.  It could also be that the patients are livelier and more apt to vocalize, and some of the others I've seen have been apathetic or catatonic.  It's hard to read the landscape and I don't know enough to be able to interpret it.

Negatives - while there's outdoor space, the patients don't get to use it.  I asked, and was told that patients are taken outside about once a week, unless you have private-pay nursing or take them out yourself during visits.  Clearly this is a staff ratio issue.  One of the problems in a big facility is that bureaucracy takes over, and the patients are managed for the convenience of the staff.  Possibly for that reason, Nursing Home 5 favors private rooms (in contrast to Nursing Home 1)  - they showed me several and seemed eager to have me start the reservation process.  There are dedicated dementia units, including a locked ward.  As for the quality of the patient experience, it probably comes down to the quality of the particular supervisors and line personnel you're dealing with - which probably accounts for D's report about the mix of good and bad. 

On the whole, the place reminded me of Mt. Sinai Hospital.  That's not a complaint - I've had good experiences at Mt. Sinai and they're extremely professional, so the same might be the case here.  It brings up the point, though, that none of these places are homes in any conventional sense.  They're low-intensity hospitals.  Some feel cleaner and more professional, some feel superficial and uncompassionate.  None of them so far is warm.  We're talking about warehouses for people who've fallen out of society but aren't willing to die quickly enough.

Which means that the assisted living facilities will be worth a look.  That's a project for next week.  Another project - track down the friend of a friend who's a local emergency physician, and who volunteered to give me his impressions of the health of the patients who live in the local nursing homes and wind up in his ER.  That's not the kind of information you get from guidebooks...

An additional observation, for what it's worth - Nursing Homes 1 and 5 are nonprofit, in contrast to Nursing Home 2, which is a for-profit enterprise.  That's probably a significant difference.  The remaining two nursing homes on the list are for-profit, too, so I'll be able to put the theory to the test.

Speaking of profit, or lack of same - costs are going to be very difficult to figure out.  There's apparently no such thing as apples-to-apples.  Some facilities quote you a high day rate, but it's inclusive.  Others quote a low day rate, but then add on - as much as $70 a month for laundry services, nearly $10 a day for "incontinence products."  I'm going to need to put together a spreadsheet and line up all the a la carte items and see how they compare.

On the subject of finances:  I need to get together with the Maryland elderlawyer fast.  I'm still not clear on how the local Medicaid process works.  There seem to be two tracks.  Nursing Home 1 told me that I needed to file the Medicaid application immediately, then pay for care during a 20-month waiting period (not counting any additional asset transfer penalties that apply).  Nursing Home 2 told me that I'd have to spend down all the transferred assets first, then apply for Medicaid once the assets are down to $2500.  I asked what would happen during the (I assume) several months between spenddown and Medicaid approval, but nobody had a clear answer.  Clearly it's time to call in the professionals again.  The application process, whenever it hits, is going to be as daunting as it was before, up in New York - I've got to pull together the same reams of information - bank and brokerage statements and tax returns going back years, and multiple proofs of citizenship and eligibility.  Still, I've been through it before, so while it's daunting, it's not as overwhelming as it was the first time around.

Bottom line: I can't say I'm enthusiastic, but it seems like we're making progress.

I'm still not sure at this stage that a facility is the best thing for him.  There's something to be said for keeping him at home, at lower cost, with a good care establishment that I can trust.  Seems like a shame to pull it apart, just because I can't travel to New York as easily anymore.  Of course, a number of people, including M and Dr. B, have told me that he'll be better off in a nursing home... I'm not going to start those mental gyrations again, at least not yet.  But note for the record that every good policy analyst includes "do nothing" as one of the options to be analyzed.  You don't want to take action just for the sake of taking action.  So when I'm weighing nursing homes against assisted living facilities, and nursing homes against each other, I'll also take a look at the New York apartment option and see where that rates.

That's all for today - it's enough.  On Monday new calls and new appointments.  With luck, more visits next week.  Then, by the week after, a shorter list and a schedule of repeat visits and maybe some cleaner movement toward a decision.  At least it's all happening now.

 

 

Father's Day, More or Less

A difficult visit.  I gave him his early Father's Day gifts - bare bones this year.  Shirts, slippers, lounging pants big enough to accommodate the Depends.  A small box of Godiva chocolates (he liked that).  No books this time - the first time ever that I haven't given him books.  Last year it was equivocal, but this year there was obviously no point - he can't cope with books, so why torture him?  He was barely able to work with the cards.  I had to buy very simple cards - one with a picture of Snoopy that was intended for a grandfather (very little text) and another with a picture of a cat.  He recognized Snoopy, sort of, at least as a familiar object.  He didn't really recognize the occasion.  I'm not sure he thinks of himself as a father - as near as I can tell, I'm now a sort of brother that he adopted a long time ago, before the war.  I'm also two separate people - the one who visits and the one who telephones - but that's a different story.  And of course I go into and out of awareness.  At one point this afternoon when I was out of his line of sight, he mentioned that Alan would be stopping by.  Then he looked at me - "And there you are," he said.  It's all situational.  No problem - I don't really need an identity anymore, I just have to do what I have to do, like observing the holiday, for example.

As for the problems - first, E wasn't there.  She had to resolve some issue with her union and had the day off.  The covering attendant was one of the weekend staff - an elderly woman who's intensely religious and spends her days reading Bible tracts and watching Christian television instead of interacting with him, which is probably OK because the interactions aren't good - she can't cope with him at all. It's not exactly her fault - she's clearly way over her head.  But around five she went in to change his diaper and we nearly had a fistfight on her hands.  The only thing she knows how to do is force the issue - pull down his pants and such - and that gets him furious and you wind up with a string of cursing, "Leave me alone, goddammit!" and such.  I'd heard a little of this on weekend phone calls and E had some more to say about it and she was right.  I'll have to be in touch with M and request another change of staff...

Then there was the weather - downpours, which led him into a flat-out panic about my being outdoors.  He usually wants me to stay over but this was fierce and he wouldn't let it go.  I tried to explain to him that a) I was traveling by train, not driving and b) I have to be back in Washington for meetings (one of them is with a nursing home but I didn't mention that).  Unfortunately, his short-term memory doesn't hold from one sentence to the next, so he was stricken several times over about what was going to happen to me in my car.  And he's no longer able to understand words or concepts like "work" and "meeting," so those explanations didn't get very far.  He insisted I stay.  He insisted I call my/his mother to tell her I was staying.  I finally just maneuvered myself to the door and said quickly that it had been great and I'd be back in a couple of days and left.  I didn't say which days.

The real cause of all this - apart from the fact that he's alone and frightened and dependent - is that he didn't want to be alone with the covering attendant, and the confrontation he'd had with her destabilized him, so everything was worse.  All of which persuaded me of two things - first, that I've got to get him into a nursing home fast, and second, that moving him into a nursing home is going to wreck him completely.  As usual, no good choices.

There were complaints bleeding through the rest of the conversation - multiple references to "the women" and how they're lying around and not doing any work.  This got mixed up as usual in the television stream-of-consciousness - another beer commercial came on during the Yankees rain delay and he pointed to the people in it and said "there they are" - meaning the attendants - "they're all just hanging around."

Get him to the nursing home, yes.  It'll be bad but it'll be safer, and after the one big shock, maybe he'll settle into it.

Tomorrow morning the site visit to Nursing Home 1.  Then in the afternoon more phone calls to set up more appointments.  Now that I've got momentum, I'd better keep it.

The Nursing Home Search Begins

OK, it's official - I've started to visit nursing homes.  First site visit was this morning.  I'm only five months behind schedule.

Monday morning I drew up my short list - five nursing homes and four assisted living facilities, all recommended by D, the local geriatric care manager.  Monday afternoon I started making phone calls, and by yesterday I'd scheduled two appointments - this morning's, and another on Friday morning.  Two additional nursing homes are sending me brochures, and one hasn't yet called back.  I haven't contacted the assisted living facilities yet - that'll follow over the next few days.

Impressions?  Not many, not so far - it's too early in the game.  But for what it's worth, this morning's facility - let's call it Nursing Home 2, since that's where it sits in D's priority list - was very clean and very polished and left me feeling slightly depressed.  It's on a decent amount of land on a semi-rural road in Potomac, MD.  It's new but wants to seem old and established - sort of like the luxury McApartment Complex I live in,  It has 19th Century moldings and trimmings, and looks like it was built to resemble a minor European palace out of cheap materials and fittings that somebody bought off the shelf at Home Depot.

The admissions officer who gave me the tour was polished and attractive in a surfacy kind of way, like the building.  She was friendly and seemed concerned and engaged, and got me through in a half-hour without asking too many questions or offering too much information.  The lobby was full of staff - no patients in evidence.  Except for trips to rehab, the patients seemed to be concentrated on their residential floors.  Patients were very clean ("he's a very clean old man").  Some were attending activities and some were being moved from place to place, mostly in wheelchairs.  Staff interacted with them cheerfully and generically, the way you'd talk to a child you'd never met before. 

The first set of rooms I saw were decently attractive - hospital rooms but with carpeting and some personal decorations, mostly photographs.  The Alzheimer's unit wasn't quite up to that level.  It had once been the acute care floor, and because they'd had to work with IV lines and various spills, they'd left out the carpeting.  Institutional linoleum instead - colder.  The floor can be locked to prevent wandering.

Admissions tour woman told me it'd be fine for me to come back, maybe on a weekend, when there are visitors.  She also told me they're a pet-friendly facility - pets can't stay but can visit.  That might be a factor.  I took an information kit that outlines the (high) fees, and left for the day.

It sounds like I'm negative but in fact I'm trying to stay neutral and reserve judgment.  I don't have a frame of reference and I don't have a standard of comparison.  That'll come.  It may be that this is the best that's out there.  If so, fine - it was modern and seemed safe.  It also seemed like a decorative warehouse for the not-quite-dead.  Naturally, that bothers me.  But it could be that that's what these places actually are.  Sad - but typical of the society we're living in, the kind that builds you a convenient, expensive storage facility that looks like home, but isn't, then charges you a premium for it.

It's also possible that there's better stuff out there.  The point of this first round of visits is to find that out.

Tomorrow, a New York visit.  Friday, Nursing Home 1.  Then on from there.

Harriet Visits Again

The visit Wednesday from cousin Harriet - very much like the last one.  My father was much less coherent, of course - he spoke in random syllables more than last time, and went off into random flights more often (out of nowhere, he started talking about how the living room mirror was crooked, and the government needed to do something about it.  Mirrors are important to him these days.  Last week he looked in the one in the dining room and didn't see himself.  He saw his surgeon instead). 

But structurally it was about the same.  Harriet talked about the things that acute, educated Jewish ladies of a certain age (93) like to talk about (Trollope, Little Dorrit, the Iranian elections, whether Obama really agrees with the Reverend Wright).  Cousin Arthur got past his hearing problems and threw in his own conversational elements ("explain to me - what's the difference between Hinduism and Islam?")  His girlfriend, Edith (90) was mostly quiet and slightly ironic.  My father did his improvisation - words and sounds and random elements - over and above and beyond and around all this.  I gave up on trying to manage things and just responded as best I could, which involved trying to keep track of all the lines of conversation at once.  It was a little like three-dimensional chess - it was exhausting, and it still is.  I haven't totally recovered.

There was only one bad moment.  My father tried to explain about some of the family photographs and couldn't begin to make out who my mother was - which shouldn't be surprising even to newcomers because a couple of minutes earlier he hadn't been able to recognize himself in another fairly recent picture.  But his not recognizing my mother brought them up short.  Edith looked at him and said, "How could you forget something like that?"  She sounded indignant, which is a decent way of covering up how frightened she must have been.  I decided I'd better derail that particular line of questioning and hissed something about "because he has Alzheimer's Disease, that's why."  She nodded - yes, I get it - and that was that and we were back to the regular word salad already in progress.

With it all, he was better during the visit than before or after.  When I tried to tell him that Harriet was coming to visit, he had no idea who I was talking about - but once he saw her, he recognized her, and some memories came into focus.  Not a lot, but he was able to talk about the 1930's and her visiting him in Atlantic Beach, which in fact she did.  Afterward he wasn't entirely clear about who she was but he knew he liked her - described her as the woman with the white hat (hair), and insisted that I arrange to visit her myself since I live so close (she's in New Jersey, which he understands a little, and I'm in Washington, which isn't a place to him anymore).  He remembered Arthur less well ("the big guy - husky - with a lurch" - Arthur is in fact big, and stoops and limps a little) and Edith not at all.  He didn't know her when he was young, and new memories don't form anymore. 

For what it's worth - a lot, in fact - Harriet and Arthur and Edith seemed less upset about my father than they did during the last visit.  It's only been eight months, so he hasn't changed all that dramatically.  And they've had more time to get used to the idea that he's really far gone.

Harriet isn't doing well.  She just had her pacemaker replaced and said she doesn't feel worse, but doesn't feel better, either.  She seemed a little more frail.  As you know, every time we have one of these visits I speculate about whether it's going to be the last one.  Of course, one of them will be, either because I move my father or because something happens to one of the cousins.  Harriet's frailty got me thinking about how the whole era is vanishing - the '20s and the Depression and the war.  At the first reunion, four years ago, I had a strong sense that I'd fallen through a trap door and wound up at a 1930's social night.  It was at Harriet's house, which has 30's decor, and of course all these people who'd known each other then were back together, and the atmosphere was 1937 revived, not 2005.  It was rich.  I grew up on the stories and I felt a real connection with it.  Now all at once it's going by the boards - which is only natural, everything does, but you can still take note of it and know you're going to miss it.  Chunks of history aren't replaceable - which is a truism but that doesn't make it less surprising when you actually experience it.

Next week I start the nursing home site visit tour.  Got to do my part to pull down the old house.  Updates about that soon.

Not Falling Off Cliffs, Just Sliding Downhill

Apologies for the long silence.  No dramatic reasons - fatigue, as usual, and also had to get through an excruciating writing assignment, a long technical piece on accounting issues that I've mostly fought to a standstill.

The quick update is: he's worse - not in any dramatic ways, and it's impossible to say whether the surgery played a role, or whether he's just declining, and the timing of the surgery was a coincidence. 

Most notable are the speech issues.  Monday night and Friday night, we had 45-minute phone conversations that consisted entirely of word-like sounds - once again I had no idea what he was talking about and spent my time improvising my half of the conversation, which may or may not have intersected with his half.  During the Friday session he fell asleep for about two minutes, then picked up as though nothing had happened.  Tuesday night we had a five-minute conversation - he told me I should get together with Alan and figure out the timing of my visit, then said "Thank you very much," and hung up.

During the visit itself, on Wednesday, he was in good spirits but mostly incoherent.  Added to his own distorted speech were the new listening comprehension problems.  Recurring patterns - he processes words as homonyms ("Let's go to the dining room and eat," I said.  And he said, "East?  East?")  Also, he'll make a statement, then immediately say "Huh?" as though you've said something, except that you haven't - there hasn't been time.  It's as though his brain is telling him that you should have responded, so it decides you have.  In general there's a disconnect between sensory input and his ability to process it - he's had that problem with visual information for years, but now it applies to sound, too.

M visited him Thursday and told me she'd noticed the incoherence - says she thinks it's part of the overall decline.

Upcoming events - Monday and Tuesday I'll finish off the writing assignment.  Wednesday I'll go up to New York to visit.  His 93 year-old cousin Harriet is coming to see him again, and I'll help manage things.  No expectations - the last time I thought it might be their last get-together, but it seems it wasn't.  I've updated Harriet and she told me she won't expect much.  We'll see how it goes.

As of Thursday I'll have a more open calendar - which means I'll get out my nursing home notes and start scheduling visits for the second half of the month.

More frequent updates to follow.

No, Not That Stable After All

I don't know... that didn't exactly fit my definition of "stable."  I walked in and the first thing I got was a two-hour, high-energy free association riff based loosely on the SNY telecast of a minor league baseball game between the Buffalo Bisons and the Lehigh Valley Ironpigs.  Which, granted, sounds a little bit surreal to begin with, but the conversation was moreso and unfolded along these lines:

"So, [camera focuses on pitcher Nelson Figueroa], those figueroas, they're all out there, and [camera shows the number 27 on a player's back] there are those two sevens and [camera cuts back to Figueroa, number 43] four threes, and [longshot] they're all running, but they're not running like they used to, it's all kids, and [beer commercial] they've got a bunch of girls, and it's like they're doctors, they're only in it for the money, and [Verizon FiOS commercial with actor who looks like I did 25 years ago before I had a beard] there you are over there, but it's all different, it's not making sense..."

This was peppered with more than the usual cargo of nonsense words:

Him: "And what about your french go college, how are you liking that?"

Me: [alert and in free-fall and trying to grab at possible meanings] "Oh, it seems to be going pretty well.  What do you think about it?"

Granted, there were a couple of moments of real personality and self-awareness and even wit.  Before dinner he pointed to E and said "You're going to be there."  Then he pointed to me and said, "And you're going to be there."  Then: "And me, if I'm still around I'll be there."  Good enough.  But on the other hand there was the obsessive pulling at his finger joints (haven't seen that in months) and a failed search for his wristwatch (he was wearing it but missed it by a foot and kept groping for it above his elbow) and the long runs where he vocalized about unfiltered, uncensored visual input.  There were auditory problems, too - he'd make a comment, then instantly say "Huh?" as though you'd said something, but there hadn't been time to get even a sound out.  And there were several distressed comments about how it doesn't make sense, it's just not making sense anymore...

I asked E when the last time was that he'd had a Tylenol 3 and she said Sunday.  I guess it's possible that there'd be some still running around in his system four days later, but I don't think so.  My take - sorry, M - is that he's taken another cognitive hit.  Not as big as last year's, and not so dramatic that you'd notice it if you didn't know him really well.  But he's definitely off.

On my side, there's a new level of fatigue, and maybe the approach to a breaking point.  I'm not sure why - maybe because he's suddenly worse, maybe because I've been doing these weekly runs for a year and a half and it's getting to be too much.  In any case, I suddenly thought - no, felt - that I've got to end this, it just can't continue this way.  Which probably means that I'm ready to move him now. Things seem hard - things are hard - until you're ready for them, then they get easy.  It doesn't seem right to leave him alone (not physically alone but you know what I mean) in his apartment in a state like this, talking about how he misses me and there's not enough company around (he did that too), and not recognizing E from one minute to the next.

I'm on the train home now and tomorrow morning I'll take out my nursing home list and start making calls.  It's clearly time.