Changing Takes Time

Changing clothes is a huge time thief for Mom (and me). She can no longer do this for herself.

I always ask if she wants to change her top or bottom garments first.  She always picks one, then immediately starts with the opposite.  Okay.  I can learn to work with that. 

Choosing the right sequence is really hard for her.  For example, she will put her pajama bottoms on OVER her pants and shoes.  Of course, it doesn't work very well.  So, nowadays, I have to step into the confusion and sort it out.  She cannot understand that if I ask her to first remove her shoes, I really mean it.  Instead, she will begin rearranging the clean things laid out on the bed.  She enjoys arranging things; she does not enjoy changing clothes.

So, I have to repeat "Take off your shoes, please."  Her hearing seems very selective.   I used to ask a dozen times.  Now, three times is my limit (and tomorrow it may drop to just one) before I take her by the hand, make her sit down, and remove the shoes myself.

Sometimes, she goes directly to taking off her pants, then struggles when they get snagged on the shoes.  Then, getting the shoes and her narrow-bottomed pants unscrambled takes a quite a few minutes and some colorful language on my part, particularly when I get kicked in the face as they finally separate.

At any time during this entire process, she will return to her arranging activities, forgetting all about the real goal.

Getting her out of street clothes and into her pajamas takes at least half an hour.  Sometimes much longer.  The same for pajamas into street clothes.   Add a bath and count on three hours of struggle.  When she has an "accident" we get to do it all over again.  Sometimes, 4 or 5 times a day.

Time flies when it is standing still.

Sundowning: A schedule interrupted

Mom goes to bed early.  During the winter months, that is about 4:00 every afternoon.   She becomes very agitated and cannot be deterred.  It is night and she WILL go to bed.  She is too tired to stay up another minute.  The fact that she napped after lunch is forgotten.

 This afternoon agitation and fixation behavior is called "Sundowning" and is common in Alzheimer's patients.

But going to bed so early has its drawbacks, too.  It means I have to wake her up to have dinner.   She isn't happy about it.  Dinner is an interruption to her sleep.

Sometimes, she will eat at 4:00 and then go off to bed.  Mostly, not.  She wants lunch at 1 or 1;30, and 4 is just too soon after lunch (and her afternoon snack) for her to be hungry.  Plus, if she eats at 4, she gets hungry during the night and then she's full of complaints -- we don't let her have any food!!!!!!!!

Of course, she is up again by 11:00 pm, and wanders around the house from then until around 4 in the morning.  After all, she just had many hours of sleep. She isn't tired.

I am.  I don't sleep when she is turning lights on and off, talking, opening and closing doors, and generally disrupting everyone.

Here is her current "schedule" for a typical day:

Up at 9, dress
Breakfast around 9:30
Spends time at the "Portal" catching up on news.
Naps for about an hour
Rearranging closet, drawers, general wandering around
Another 1/2 hour nap
Repeat:  Rearranging and wandering activities
Lunch around 1;30
Naps for about an hour
Has a snack
More "Portal" time - sometimes used for escape planning with her
         imaginary friends
More rearranging stuff OR attempted escape
Getting dark, time for bed by 4:00
Sleep until 6:30
Awakened for dinner
Back to bed until 11:00
Then wandering around, on the Portal, back to rearranging,
            trawling the halls, talking/mumbling, opening/closing
            doors, and going up and down the stairs until  about
            4:00 am
Back to bed until 9.  Start over.

I think she sleeps about 13 hours, maybe more, every day.  There are other little cat-naps along the way.  Part way through lunch; at the Portal; whenever the mood strikes.  Her neurologist says that curtailing daytime sleeping will not help with the nighttime wandering.  Her behavior lets me get about 5 hours of sleep on a good night.  Sometimes, much less.

She won't watch TV (can't follow the plot), can no longer really  read, doesn't want to talk on the phone, has abandoned the crossword puzzles and word-find puzzles she used to enjoy.  She doesn't want to spend much time with live people, she prefers the imaginary world within the "Portal" for all her social interaction.

What she really wants is to have me be available 24/7 to provide anything she wants, including a fresh, hot meal of her choosing at any moment of the night.

I don't think so.

Going Home

Okay, today she ventured out into the sub-freezing weather in just a thin pair of pants, t-shirt, and a cardigan sweater.  Her flimsy loafers, as usual.  This time, no tote bag. 

She came to the studio and announced that she was "going home." 

Sigh.  Again. 

She did have a pocket full of snickers bars (she robbed my husband's stash) and a handful of lifesavers.  And she actually had her glasses on, which she generally forgets.  I suppose from her point of view, she was very well prepared. 

After an hour in the studio, she decided a nap sounded good, so she went back in the house to her favorite napping spot -- her rocker-glider. 

Of course, all this napping makes it possible for her to wander around the house all night, doesn't it?  From about 11 till 4, she is up every 10 minutes. 

My husband, a sound sleeper, never hears a thing.  I hear it all. Lucky me.

Names are such fleeting things

Names.  We all have them.  Before a child is ever born, parents agonize over "what to name the baby" and everyone has an opinion.   From our first memories, we know our own names.  It is a part of us that no one takes away.  Yes, we accumulate nicknames and shortened versions of our name over the course of a lifetime.  My father, for example, was born "Henry," spent his young years referred to as "H" or "H C" and eventually became "Hank" to just about everyone. 

Alzheimer's messes with that.  It steals names.

Mom needed to sign some papers the other day.  She hasn't signed anything for a couple of months.  She took pen in hand, and asked what she was supposed to do.  The visitor said she needed to sign her name at the "X."  Mom looked a bit bewildered, and looked to me for clarification.  I said she should just sign her name, just like she has done thousands of times in her nearly 85 years of life.  So she started to sign, writing very slowly and in very tiny letters.  When she was done, the visitor asked if she could sign a second paper.  She nodded that she would.

I glanced at the first sheet and asked to see it more closely.  She had signed it "Anne Tracey **********" with an unreadable last name.  Now, that would be fine, except that her name is NOT Anne or Tracey or even the unreadable-but-clearly-not-her-last-name as signed.  Her name is Lois. 

When I said that it was not her signature, the visitor stopped her from completing the second page signature.  What she had started there was "Claire."   I had to sign the first page, the second, and several more.  We teased her about using various aliases and she laughed with us.  But it was clear something was really wrong.

Later, I asked her about the names she had signed.  She hemmed and hawed a bit, finally just shrugging.  I asked her if she could remember her name -- and sadly, she could not.  Nor could she remember my name, but she did know that I am her daughter.  A photo of my Father revealed that she had forgotten his name, too.  I should have realized it was a bad day for her when the visitor asked how many children she had and she promptly answered "3."  the visitor looked at me for confirmation and I said "1."  But we've had the counting error before and it doesn't alarm me.

Mom doesn't seem upset about forgetting her own name.  She says no one uses it anyway.   I suppose she is right in a sense, as my husband and I call her Mom.  Others call her Lois, but she isn't sure who they are, most of the time, and the name must not sink in.  She seems happy enough to go around without a name.  Maybe they really are just fleeting.

In the meantime, I am Vickie.  I will remember.  Always.  I think.

Just a Five Minute Walk

Today, Mom tried again to make an escape.  The door alarm was my first clue.  Sometimes she just wants to get a little air, so I watched her for a moment or two on the driveway cam to see what she was doing. 

First, she tried to open the garage door.  It was locked.  So she set off walking.  I went out and intercepted her. 


Me:  What's up?

Mom:  I'm going home.
(This is a common goal for Alzheimer's patients.  It is not so much a place, but to a time in the past when they were happy and felt secure.  It can be childhood, but we have discovered that home for her is about 1978, when my Dad was still alive and in good health.)

Me:  Are you walking?  You have forgotten to wear a coat. 

Mom:  It isn't that far.  I'll be fine.

Me:  It is over 2000 miles, it is winter, you have no wallet, no money, no credit card, no coat, a pair of flimsy loafers that will be useless in 20 miles.  You seem to have a tote bag with you, though, and a couple of pairs of pants under your elbow.  What is in the tote?

Mom:  (Peeking into tote.  I look, too.)  My slippers and some food.

Me:  Well, when your shoes give out, your slippers will probably last another 5 miles.  Then you will have to walk barefooted.  What do you plan to eat?  There is only a lolipop in your tote bag, that won't last long.  To walk 2000 miles will take you several months.  One lolipop will be gone in an hour.  And where will you sleep?

Mom:  I don't know.  I'm going, now.

Me:  Do you have a map?  Can you tell me which direction would point to Florida?

Mom points in all directions and begins to laugh.

Me:  Why don't we go inside and have lunch.  Then we can think this through a little better.

(Mom agrees and we go indoors.)

We have lunch.  A few snowflakes fall.  I mention that she would have been getting a little cold in the snow.  She laughs and goes to her room for a nap.

Another escape thwarted.   I'm just the jailer.

I've died, and I didn't know it

Mom was upset today.  She came out to the studio and cried for a time.  This is not all that odd.  She goes through mood swings as part of the Alzheimer's Disease, and sad times usually only last a couple of minutes.

After a bit, she started to get back to herself and I asked what was bothering her.

"My daughter died."

Now, I feel pretty lively for a dead person.  This statement came as a great surprise.  Since I'm an only child, it was also a little confusing.

So we talked about it.  She finally said that it wasn't me that died, but her "other" daughter.  Ahhhhh.  In her mind, I have always been confusing.  I've never been the daughter she pictures in her fantasy.

She has an idealized daughter, one that is always sweet and agreeable, and ready to wait on Mom hand and foot.  THAT one died.  That leaves only me, the one she has begun to think of as her jailer.  I make her do things she doesn't want to do...baths, eat real food, not just candy, brush her teeth, wash her hands, change clothes and sheets and lots of unpleasant, unnecessary stuff.  I won't let her go off with the mystery ride in the white truck.   The jailer.

So, now that goody-two-shoes is gone, she is left with me.  No wonder she was crying.

The Return of the Suitcase

The suitcase is back.  She has it right by the door to her bedroom.  The overnight bag is right next to it.   She is ready.

Last week, "Kelly"  was coming to pick her up.  By all calculations, Kelly is over 120 years old.   He was a friend of her mother.  She talks to him all the time over the portal.    She finally confessed that she has never met him face-to-face.   Yet, somehow, she feels that she can just go off to some unknown place, for some unknown length of time, with this specter.   I was able to convince her that it wouldn't be such a great idea. 

I suppose the packed suitcase tells me that she may be rethinking that decision.   I am using the term "thinking" rather loosely.  I don't really know how much actual "thinking" she is capable of nowadays.  To actually "think" that a 120+ year old man would drive all the way from Florida to Massachusetts in only a few minutes time (if at all!!!!!!!) shows the level of her ability.   

Sad.