Hide and Seek

I made a stop at the supermarket on the way home because we seem to be out of everything at the moment.  We are still out of a lot of things, but those are things I usually buy a Costco, so I suspect a trip to Costco is also in the foreseeable future (we are almost out of dog treats, which I buy there -- oh horror!)

 

When I got home, there was an email from my friend at Atria saying she had not seen my mother at lunch yesterday or today, or at dinner yesterday and wondered if all was OK.  Naturally I panicked.  I called my mother, but there was no answer, so I drove over to Atria to find out if she was alive or not.  No answer to my knock on the door and I wasn't sure what I would find inside.

What I found inside was...nothing.  She wasn't there.  I snuck down to the dining room and could see her at a table dining with three other women, so I didn't let her know I was there because I didn't have time to visit. I just came on home, but much relieved.  And also very relieved to know that there are residents who watch out for her.

Fog and Smog

Many years ago, I was on a business trip for The Experiment in International Living.  I was visiting a woman in Temecula, which is in Southern California.  I was flying into the John Wayne airport in Orange County, the first and last time I have  done so.

I remember the flight was smooth and pleasant.  The sky was a brilliant blue without a cloud in the sky all the way, but as we began to approach the airport, if I looked down below, there was this brown gunky smog that covered the air above the ground, so you could not see the airport.

As we began to make our descent, I watched the plane leave the beautiful blue of the sky and sink slowly into the brown gunk, knowing that when I got off the plane, I would be breathing that stuff.  It was a sobering moment.

I felt like that today, when I got to Atria.  I had so completely put my mother to the back of my mind all weekend that it was like flying in that clear, trouble-free, smog-free world above the John Wayne airport. 

Visiting my mother this morning was like sinking back into the smog.

It was not a good day.  I could tell when I called her that she was not feeling well, and when I got to her apartment, I could see that she was not. She looked old and worn. She said she hadn't felt well for a couple of days. She still has not made a hair appointment and her hair is long (for her), stringy and she looks like the stereotypical picture you have of an old lady in a convalescent home.  She has to be reminded to brush her hair.  When I mentioned it to her, she ran her hands through her hair and said "Yes, but I just don't feel like it."

The woman who has had her hair done every week or two ever since I've known her, knows that her hair is too long, that she looks terrible, that she is going out in public with this horrible hair, and she doesn't care. That is very sad.  Her nails are also very long, with chipped nail polish and she picks at them constantly, trying to remove whatever is under the nails.  But she didn't want to have a manicure when my cousin Niecie offered to go with her to get one.

She couldn't remember if she had gotten dressed this morning and decided she probaby had because she was wearing a bra, though her pants look like they might be pajama pants (not that there's anything wrong with that, of course ... my sweat pants are often my pajamas ... it's just quite different for her.)

She is coughing and her nose is running, but she doesn't have a cold.   She knows she doesn't have a cold because colds are caused by a bug and she doesn't have a bug.  But she coughed throughout entire visit, with some mild congestion I could hear in her lungs from across the room.  I suggested she might like to see a doctor.  She says that when she has her nap after lunch, the cough will be gone.  (If it's not gone, or at least better tomorrow, I will take her to the doctor, whether she wants to go or not.)

No matter what subject I tried to talk to her about, she changed the subect to one of two things:  1) how old she is and living to "hunnert" and 2) what is going to happen to all her crap when she dies.  I could NOT get her off of those two subjects.  She wants to live to hunnert, but if she dies tomorrow that will be OK, but she wants to get rid of all her crap so I don't have to deal with it.

This is a recording.  An old recording, by now.

And if I die before she does, who will take care of her crap? (that was at least a new, if not entirely pleasant topic to deal with)

I know that one of the biggest adjustments for caregivers is the personality change, the loss of the person you've known and loved and this new person who inhabits the body of your loved one.  I know this is happening.  I've been dealing with it for some time now.

But when you have a chance to get away for a few worry-free days, and then come back and find things worse than when you left, it's very depressing and you realize that the big breath you have taken is filled, no longer with the clear clean air of the beautiful blue sky, but with the smog that is daily life.  Once you readjust, life goes on.  But it's an adjustment you have to make again and again, each time you take a bit of time off

NIecie

This morning was a bit crazy.  I was frantically transcribing the interview and had to get to Atria by 10:30 because my cousin Denise was going to be there and we were going to try a Facetime chat with Peach, but she had a meeting to get to, so I needed to get the thing set up quickly (Atria has only recently offered wifi for guests).

I got to Atria a little late--about 10:45, but thought we could still reach Peach, but Niecie wasn't there.  I decided to get the call going anyway because Peach was waiting for me, but when I tried to connect, it said that she was not equipped to receive Facetime.  I tried sending her a text message, but it turns out, I just learned, that she doesn't have a cell phone, so I didn't reach her.

In the end, it didn't matter because by the time Niecie arrived, it would have been too late to call anyway.

Not really a noteworthy visit.  My mother told me on Saturday that her nails were so long she needed to have Niecie (who is a beautician) come and give her a nail trim, but on the phone she told Niecie she didn't need a manicure, so she didn't bring her equipment.  Then, over lunch, Niecie suggested they go together to a nail salon, which they have done before, and my mother refused to go.  Said she didn't need it, though her nails are starting to look like they are entered into a "longest nails" contest.

While we were visiting, the phone rang and my mother had a lively conversation with someone.  When I asked her who it was, she said she didn't know, but it was a "male relative" but she never caught his name.

I've talked with a couple of people recently who are disappointed that my mother isn't "getting better."  I'm surprised at that.  She isn't under treatment.  She just sits in her room.  And dementia isn't "treatable" anyway.  It can maybe be slowed down, but not cured.  Her stepson suggests we try an expensive herbal supplement for memory enhancement, which sounds like a lot of snake oil, but I told him I'd check it out.  Anybody ever hear of Phosphatidylserine?  I read enough about it to know that I wouldn't try to give her anything like that without a doctor's approval. Besides, she hates to take pills and won't even take Advil because she doesn't want to become addicted (yes, I know it's not addicted).  She'd rather live with her back   pain than take a pill and when I remind her that the medication helps control the pain, she just gets that flirty smile she uses on her doctors when she doesn't want to do anything they tell her and tunes me out.

She's her own worst enemy. I'm glad my dementia support group meets this week.

Philomena

I had a great idea today.  I've been waiting for Judi Dench's new movie, Philomena, to come out so I could take my mother.  She has been telling me for years how much she loves Judi Dench.  She's seen every episode of As Time Goes By so many times she knew them by heart.  Of course, now I don't know if she remembers that, but she did show some sign of recognition when I told her I wanted to take her to the new Judi Dench movie when it came out.

December has been good for her.  At least the last part of it.   She has been more "with it" than she has in a long time, I'm sure due in great part to all the stimulation she's had.  It's not perfect.  I've found gifts from her in the apartment twice and when I asked her who they were fromshe answers "I don't know.  I don't know who has a key to my apartment.  They just appear.  I don't have a clue who leaves them."  (So if you brought her candy or a nice bottle of Claret, let me know!)

But she has remembered upcoming events.  She remembered when the house cleaners were not going to clean the house.  After a month of talking about it and wondering about it, by the time Jeri was due, she remembered she was coming.   She was able to hold her own in conversation, most of the time.  I was very pleased.

I was also very pleased when I called her two days ago and told her I would pick her up today and we would go see the Judi Dench movie...and she remembered it two days later.  Be still my heart.

Before I left home, we had a text from Jeri saying that, miraculously, she had landed safely in Boston.  Looking at the weather reports which predicted blizzard today, I thought she would be trapped here for another day, but no...she is home safe and sound and I'm sure Phil and Lester are very happy to see her.

So I picked my mother up at 1.  I knew that parking might be tricky and I wanted to allow time to find a parking place and to let her walk slowly to the theater.  I thought we might get a nice gelato at the little stand attached to the theater while we waited.

We got to the parking lot well in advance of the start time for any of the movies.  And the parking lot was full.  Both levels.  Full.   You can't park on the street and go to a movie because street parking is only 2 hours and movies are generally over 2 hours long.  I drove around and around.   There is a parking lot several blocks away where you can usually find parking, but there was no way she would be able to walk the distsance from there to the movie theater that was showing Philomena.  I kicked myself for not having Walt drive us down and pick us up afterwards.

Parking in Davis has become a nightmare, and the city only makes it more difficult.  No three hour on-street parking (you're supposed to ride your bike, of course, but not if you're 94 and if you have bad knees at 70!). And even the 2 hour on-street parking is a pain because if it is two hours, you have to move your car, but you can't move your car to just anywhere.  You have to be at least a block away fromwhere you originally parked.  So if I'm at one corner and there is an open space at the other corner, I will get a ticket if I take it.  i have to go farther.

This completely eliminates the possibility of having lunch and going shopping, "patronizing downtown Davis" like they always tell you to do.   It's the reason why I rarely go downtown for more than quick stop somewhere.

So it was a bust.  No place to park.  We just turned around and drove home.  I was disappointed because I can't take her tomorrow.  I'm hoping I'll be able to take her on Sunday, only this time I think I'll have Walt chauffeur us just to be certain.

And before you let me know how convenient it would be if I had a handicap placard, I suspect she would rather die first than accept something that says she is "handicapped"...but it also requires a note from her doctor, whom she had not met (the doctor she saw in May was a bus) and whom she is not interested in seeing unless "she has something wrong with her."

The Magic of Bing

It was not one of her better nights. 

I had called her in the mid afternoon to ask if she would be interested in driving around town to see some of the decorated houses.  She said it sounded like fun.  I remember that was one of the pleasant Christmas things we did when I was growing up.  We would go out into "the avenues" in San Francisco and look at the houses, decorated in Christmas lights.  I was looking forward to doing it with her again. I told her Walt and I would come and have dinner at Atria with her and then we would go out after dinner.  She said that was fine.

I thought we could go a bit before dinner and have a cocktail hour, since she loves her vodka tonics and it would be a bit like old times to be sitting there and chatting over drinks.

But when we got there, she was not in her apartment.  I always worry when she doesn't answer the door because I'm afraid I'll go in and find her on the floor, dead, but she wasn't.  The apartment was empty, so we headed up to the dining room.

Yes, she was there, surprised to see us.  She didn't remember we were coming. 

The people she had been eating with were just finishing their dinner, so they offered us their seats and they left.  She asked what we had been doing, and I told her about the funeral.  Then she asked us what we had been doing.   Several times.  Each time we told her about the funeral.

The waitress delivered her dinner and she was surprised to find it on the table, not having remembered the waitress had just been there.  She asked what it was and said she didn't order it, but since it was there she might as well eat it.   Then she asked what we had been doing all day and what we were going to do after dinner.  I reminded her we were going out to look at lights and she seemed surprised that we were going to take her too.

I noticed she was more quiet than she usually is.  Kind of sunk into herself, arising periodically to ask us what we had been doing.

When a man walked by with green mint chip ice cream and Walt expressed surprise that they had green mint chip ice cream, my mother said that of course that was what they had.  It's what she always orders, she says, and immediately told the waitress she wanted a vanilla cone (which is what she really always orders).   When the cone came, she was shocked that they had given her 3 scoops, though they always give her 3 scoops.  She said she couldn't possibly eat that much and would take the leftovers to her apartment, but then ate it all anyway.

It was a fairly normal visit, though I did wonder if she was showing signs of a bit of Sundowners Syndrome, where older people with dementia are worse after dark than before dark (though if you never leave the building, I don't know if that is a factor anyway).

We went back to the apartment so she could get a coat so we could go look at the Christmas lights.  She did and we went out to the car.

I was tickled because I had brought my iPod with me, with a playlist of Christmas music and I was going to put it on, but something happened and the music never started.  I didn't realize how much I had looked forward to playing Christmas music on our travels until I couldn't play Christmas music, because Christmas music was always a big part of the season when I was growing up, and I wanted to bring back that memory for her. After trying several things, I could get an audio book to play, but still not the music on my Christmas playlist.

I decided to give it the "kick it" fix, turning off the iPod and then turning it on again.  When it came on, I chose the Bing Crosby record that we always played while trimming the Christmas tree, both when I was growing up, and then when our kids were growing up. I crossed my fingers and pressed "play."

Miraculously, it started.

So there we were, driving around all these beautifully lit homes in Davis and in the back, my mother is singing along to Bing Crosby.  I got all choked up and teary-eyed.  It was a perfect Christmas present.  It was a moment of "normal." I read recently that music is wonderful therapy for dementia patients and that even when they can't communicate in other ways, often they can still sing familiar songs.

My mother may not remember that we went to a funeral this afternoon, but by golly she sang every single one of those Bing Crosby tunes without a stumble.

Ultimately, it was a very good night.

Socialization?

I visited my mother today and it was another one of "those" days where we talked about her age and her death and I couldn't get her interested in any other topic.  When I left the apartment and went out into the lobby, a gentleman was there setting up for a puppet show and the chairs were nearly filled with other residents.   I stood there and thought for a long time about going back and inviting her to come up and watch the show with me, but then realized that she would probably just say that she didn't want to and, sadly, I left Atria and came on home.

Being in the Moment

A cousin of sorts (I can't keep straight 2nd cousins and once removed cousins and any other qualifier that goes with family relationships....and even if I could I can't remember just how this young woman is related to me, whether the daughter or granddaughter of a cousin, or what. I just know she's family) today sent me a link to a video called something like "12 minutes with Alzheimers," in which two people, a newswoman and a caretaker for a wife with Alzheimers, were fitted with various assists to help them understand what it's like to live with Alzheimers, as they attempted to complete a handful of simple tasks, like finding a tie and putting it on, setting the table, finding a white sweater, etc.

 

They had something on their eyes to mimic visual impairments like macular degeneration or cataracts, their hands were wrapped in rubber gloves fitted with things that would mimic arthritis, they had things put in their shoes to give them the feel of someone with arthritis or other problems of the feet, and they wore earphones to keep a low-level noise in their heads at all times.  It was amazing how quickly they mimicked the previously videotaped movements of persons with Alzheimers, experienced extreme frustration, and began to understand what it was like living in that world.

 

There were other videos on YouTube that I watched, identifying the signs of dementia and Alzheimers and tips for coping with it. One of them talked about the importance of being in the moment when dealing with someone with dementia.  The videos were wonderful in helping me understand why, for example, making any decision is not only difficult but seemingly impossible for my mother. They helped me understand why so often what someone says to her doesn't seem to penetrate at all. They made me realize that the time for helping her to understand anything of great importance to me has passed and is never going to come back, and I have to let that go.

 

In truth, I think caregivers of loved ones with dementia are truly heroes.  It's a 24/7 job, with no vacations, coffee breaks, or time outs to be alone, without making arrangements ahead of time to be sure that your loved one will not be unsupervised.  I am so fortunate to have found Atria, a place that she really seems to like and where I feel she is as safe as she can be, while still living independently, yet only 5 minutes from my house where I can (and do) see her several times a week.

 

I am also so fortunate that my mother hasn't retreated completely into the world from which there is no return.  She can have a reasonable conversation (many times!), she can handle her own activities of daily living, she still recognizes people.  It's just that the memory loss is worsening.  She is afraid of becoming like her mother (who also had dementia, though she died in her 80s, I think) or her sister (who was in the Alzheimers world when she died at age 81). She is enough aware of her memory problems that she is embarrassed that anybody should know how bad it is -- though she herself doesn't have a clue how bad it really is.

 

I don't know what is ahead for her, but at this time of the year, as I have done every year for the past few years, I realize that this may be her last Christmas.  She may have a dozen more in her, but at 94, looking at the possibility of this being her last Christmas is not unreasonable.

 

I need to concentrate on being in her moment and making this time of her life as rich as I can, letting her enjoy camaraderie on her level, having that "do you think I'm going to make a hunnert?" conversation a dozen times in an afternoon, if that is important to her.  I need to stop worrying about how quickly her dementia is progressing and start concentrating on what she has left and how to be with her in the most meaningful way now.  

 

As I keep saying, every time I go to Atria, I feel like I'm going to Fantasyland and some days it's easier than others, but I think the best gift I can give her this Christmas, and for the rest of her life is to fully participate in whatever is her level of interaction on the particular day. To make every day meaningful on a level she can appreciate. To find funny stories that make her laugh, or fragrant flowers that always delight her. To continue to make books for her that prod her memory without her realizing that her memory is being prodded.

 

If I can fully do that, we will have a wonderful relationship for however long she is going to be with us, and neither of us will have anything to regret when she finally does go home to her husband and her siblings.