Saturday, March 05, 2011

Please God, if there is one, don't take me on this journey

This post is about dementia, and how it has visited itself on our family.

By way of background, my wife's mother, who is now (in 2011) 93 years old, has now been moved into a dementia section of the retirement facility where she has lived for the past 11 or 12 years. She worked until she was 80, and had been the sole breadwinner for her husband and herself since I met them in 1968 or 69. She had been THE financial person for a number of firms all her life, and bookkeeping and financial analysis had always come easily to her. Very well read and educated (Hunter College), she married her (second) husband (let's call him "Joe") who was a willing participant in a role-reversed family. While she supported Joe, he shopped, cooked and did the laundry and all the other household chores. For the years I knew them, Joe was the one who had all the activities, and she happily went with him and joined in. I really don't remember her having friends apart from work or activities that Joe hadn't gotten involved in. They always had a boat, as we did, and all of us spent countless hours on Long Island Sound both at anchor and cruising together. Unfortunately, Joe was also an alcoholic, and the M-I-L enjoyed her martinis as well. She got a pacemaker after she fell off a bar stool at Brunch one Sunday morning. I doubt she needed a pacemaker, but it stopped HER drinking.

Joe was (rightfully) concerned that no one would look after him as he aged, especially if M-I-L predeceased him, and he and the M-I-L (when she was 81) moved to a Masonicare facility (unassisted living) in Wallingford CT. This went well, until Joe died (in his late 80s) in 2005. The M-I-L stayed in the apartment, but as time went on, it was slowly becoming obvious that she was losing the ability to fend for herself. Oh yes, we spoke to her on the phone daily, but we began to notice that she wasn't answering questions about her routine, and, when we visited, we could see that she was wearing the same clothing every day. Fortunately, she has very clean personal habits, and she washed her clothes in the sink, and showered daily as well. But, every day, she would wear the same duds, as tattered and torn as they would become, although there were plenty of new replacements in her dresser drawers (perhaps she didn't remember they were there or even recognize the need for replacement?).

She didn't cook, or use the washing machines, and, except for the bi-weekly vacuuming provided by the village, she wasn't cleaning the apartment either (remember, she never did do that chore anyway), but fortunately, there was no infestation. Her failure to dust, vacuum or otherwise clean the place was really not a surprise, because Joe had previously done whatever little cleaning was done, and, from what we saw, that wasn't much, and NOTHING had been cleaned since his passing..

Fast forward to February 2011. Wife's sister got a call that mom had fallen, was disoriented, and didn't want to return to her apartment. When we made our daily call later, she answered the phone but had no recollection of falling. The facility recommended moving her into assisted living immediately. Ashlar Village has different levels of living, and they wanted her moved from unassisted living directly into the "Hearth" area, skipping assisted living. The Hearth is a dementia section. It's also very expensive — about 6K/month plus extras. She'll run out of money in about 2 years, and that's probably going to be a problem then. But, one day at a time.

So, we really had to hustle, and scheduled the move for the 28th of February. Drove to CT on the 25th, pick up S-I-L at airport, and started the process. We began telling her that she was about to move, and she was confused and resistant. Several times each day we had to reinforce the moving concept, because it quickly became apparent that she didn't retain the information. She seemed surprised to see us each day, as well.

We started to pack, mark furniture, and lay out the new studio apartment. We had to tell her that we were just packing for the move, and that everything was going over. We figured that, after the move, if she actually asked for anything, we'd just tell her that we'd go look for it. Monday the 28th came, the movers arrived, and brought a 2-room apartment's worth of furniture into a studio. Our planning worked, and all but a roll-top desk, a dressing table and a table fit in beautifully. All her pictures went in and were hung, and she loves it, or at least SAYS that the new apartment is beautiful and she's so happy. She hasn't asked about the old apartment at all, nor has she missed or asked about any possessions or clothes that ended up in the dumpster.

We found ZipLok bags of change in various places, including one in the refrigerator, along with a rock-hard orange that sounded like a maraca when shaken, a hard bread, miscellaneous containers in the freezer, and, in the kitchen cabinets, every shopping bag Joe must have brought home in the 5 years he lived there. Cans of food, some burst open, a case of Joe's Ensure, lots of empty plastic bottles, toilet paper cores in dresser drawers, papers going back to the '90s and more, more, more...

We can't see into her mind. She can't tell us what activities she's participated in, or what she ate for her meals. We know she walks a lot — probably a couple of miles daily in the halls — and that the staff works to keep her busy.

S-I-L thinks she's very Pollyana-ish. She wants to please, doesn't want to be a burden or cause anyone's distress, and is always smiling and apparently oblivious to most of what's happening around her.

We're thankful that she had 90 years or so with most of her marbles, and grateful that she made it to 93 on her own. She can still sing all the old pop tunes, and show tunes as well, in harmony. She knows all the great classical pieces, and given the opportunity, will immediately sing along with them. It's like flipping on a switch. She still loves music (especially Gershwin), but can't operate a radio or CD player. She CAN work her TV, and loves old B&W movies, but really, she'll channel surf and stop anywhere. I found her watching an infomercial for golf clubs, even though she's never played or has any understanding of the game.

The agony of closing up the old apartment took its toll on the two girls and me. Not the least because we're all seniors ourselves, ages ranging from about 67 to 72. The physical exertion alone on our part was, let's say, "stressful" and the mental strain on us beyond belief. Sleep has been a stranger for a week, and we're still trying to make it through a whole night without thinking about all this.

Because Joe was a lousy housekeeper and also a drunk, the place was a pigsty. Everything we touched either stuck to our fingers or stank. Joe also had tremens, which must have made doing daily chores more difficult. We made no attempt to keep anything for ourselves except one piece of furniture and a few tools. We took a couple of pickup truckloads of garbage to the dumpster, but eventually just had to bag up everything else for housekeeping staff to haul away. 25 huge black trash bags, maybe 100 small plastic grocery bags, and clothing and curtains wrapped with duct tape. Things on the kitchen counters were simply stuck there. The three of us vowed to start cleaning up our own lives. Time to organize, shred and discard. But that's enough whining about OUR issues.

M-I-L seems happy for the time being. Time will tell if she improves now that staff is making sure she's taking her meds, and how she'll react if the Aricept kicks in and she realizes that her freedom is now limited.

I should add that M-I-L's father lived to 97, and didn't have a single marble left when he died.

More to follow, as things change...

March 13, 2011. Tomorrow will mark two weeks since the move. The staff comes in daily to make sure she takes her meds. Can Aricept kick back in after a hiatus? We think so. She's now asking for her "stuff" and realizes that she no longer has a checkbook. She wants to go to the store in the basement (where she shopped for cereal and juice when she lived in the old apartment) and hasn't quite figured out that there's no such place in her new area. But she's remembering names and occasionally if she's been to an activity. But she just said that on December 1st (why December 1st?), a metal box was delivered to her, and it's in the basement. Her missing "stuff" is in that box. Alas, there's no box, and no basement. She likes to sleep with apple juice at her side, and that's why she wants money. We explained this to the staff, and they're SUPPOSED to bring her the juice every night. They're not. She called us on the phone and asked why we hadn't arrived to visit her yesterday; we have no idea why she thought we were coming up there on that particular day. But she's now letting the staff take her to some activities (she likes singing, classical and semi-classical and show music) and to meals (they had better provide soft stuff, because she's toothless). We think she likes the extra attention she's getting in the new place, but, who knows? Stay tuned.

March 24, 2011. Today's phone call was nothing short of amazing. She had no idea what our names were or our relationship to her, or where we lived — a totally empty person on the phone. I had spoken to her just two evenings ago, and she (as usual) recognized my voice and knew my name. Tonight, she didn't even know her eldest daughter's name. How could this happen in just two days?

March 27, 2011. The strange stuff only lasted a day. We started to make our call in the afternoon, and she recognizes my voice and calls me by name. Strange but true. She seems just fine now.

June 30, 2011. Every once in a while she asks about the whereabouts of "her stuff." She can't explain what stuff she's looking for. Once she said "jewelry" and we told her it was in a dresser drawer. Occasionally she wants to go to "the basement," which housed some facilities in her old apartment's building. The staff tells her that the basement is closed for renovation, which seems to satisfy her. She can't exit the building except for a secure patio area, but she doesn't go there anyway. She's in the right place.

July 14, 2011. Going downhill. Today we went to visit. She asked where we were staying and how we were getting back. Turns out she had us confused with my wife's sister, who lives in Florida. Then we made a run to Wal-Mart to restock her Werther's candies (she's addicted to them). She read the Wal-Mart sign just fine. Wife went into the store to buy the candy. M-I-L and I stayed in the car. She asked what store we were at. I told her Wal-Mart, so we could buy her candy. O.K. Then in a few minutes, she asked what we were there to buy. I told her. A few minutes later, she asked the same question. I told her again. Physically too, she's deteriorating. Arthritis is making sitting and rising a chore. She can't walk too far, but won't use a walker or even a cane. Tonight, we phoned her. I don't think she remembered our visit. Aargh.

January 15, 2012. Got a call that she was found sitting on the floor with some cuts on her head. She apparently had fallen, so they took her to the hospital, where she got a few staples, but fortunately, no serious damage. We went to see her the next day. She had no memory of the fall, or of much of anything else. We talked about the lovely pictures in her studio, and she commented that they all seemed to be boating-oriented. She didn't recall that she spent most of her adult life on her own boats, and worked for twenty years or more in the marina and boat sales business. She said that she never went on a boat unless someone was there with her, but didn't mention either of her two husbands, both of whom were active boatmen. I don't think she would have remembered their names without prodding. We asked a lot of questions, but the answers to most all of them was "I don't remember." At least she knows that she doesn't remember, which is a good thing, I suppose. She had her 94th birthday this week. And so it goes.

April 23, 2012. One of our phone calls last week was met with the question if her daughter has ever been married previously to our marriage.

June 12, 2012. Sister-in-law decided her mother should move to Florida, close to her. Today, we drove three hours to try to get her a Connecticut ID card, so she could clear TSA quickly. We gathered all sorts of ancient papers and took her to the DMV. Except for the long waits with a 95 year old woman, I'll admit the people there were more than helpful. The first clerk took a look at everything, and kept apart what she knew would be accepted, clipped the rest together, and handed them back to us, with the warning that they were in strict order. After an hour and a half, we actually left with the ID card.  While we were there, she must have asked us a dozen times what this place was, and why we were there. Retention is near zero, it seems. We've been telling her about the move, and she seems amenable, but whether or not she'll remember anything in the next few weeks is another story. But she smiles, never complains, and is a good sport. Yes, we're thankful for small favors. To be continued.

July 4, 2012. The move to Florida. She was thoroughly prepared to go! Packing, throwing out and all took two days. She wanted to know if the photo of "her husband" had been packed (it was) but then we asked if she remembered his name, and she couldn't. She loved the flight to Fort Lauderdale! Clear weather; she could look out the window at the clouds, which she loved. She moved into the new place that afternoon. We'll drive down soon, with the rest of her stuff, and that will be that.

January 28, 2013. She still remembers the old tunes. 

March 27, 2013.  My sister-in-law was out driving with her, and reported... "we passed a sign - "Coin Laundry" on a storefront.  She asked what it was.  I told her.  She said, Oh, I wondered if it was where you clean your coins."  Her memory is out to lunch." She not only didn't know what the place was, she didn't remember that her own father owned a coin laundry for many years.

December 21, 2013.  At Manor Pines. The last photo of her.

January 19, 2014.  Well, she turned 96. Now using a walker. Spent her birthday singing karaoke! Wife called, and was greeted with instant recognition of voice and name. Go figure.

A few months later, she was confined to a wheelchair. Rolled around with her bare feet on the floor. Started to get sores on her feet. Then confined to bed, sleeping most of the day and eating very little. Needs more help than facility can offer. 

July and August 2014.  Going downhill. Had to leave nursing home for hospital, then hospice, then hospital, and again hospice.

August 12, 2014.  The journey's over. 96 1/2+. Just about the same age as her father.

There they go.