The Hat

Imagine my surprise when I walked into the kitchen this morning to find my mother all dressed and sporting a baseball cap.  This isn't your normal baseball cap -- it is made of plush rose-colored corduroy and is somewhat "fluffy" so I will call it a hat and not a cap.  But it does have a baseball cap styled brim.

When I asked what the occasion was that called for a fancy hat, she looked like I had grown a second head.   So...I switched to the straight-forward approach:

Me:  Why are you wearing that hat?
Mom:  What hat?
Me:  The one on your head.
Mom:  I'M NOT WEARING A HAT!

(I give her a quizzical look.  I cannot imagine how she is unaware of the hat -- the brim is half over her eyes.  She puts her hands to her head and discovers the hat.  Now, she has a quizzical look.) 

Mom:  Who put that there?
Me:  I think you must have.  Did you find it in your closet?
Mom:  No.  (Then she mumbles something which I will take for "I don't know anything about it." although it sounded more rude than that.)

(The hat has been in her closet for several years.  I suppose she has been "rearranging" things again and it surfaced.  She puts the hat back on, eats her breakfast and goes off for her morning nap.  I wonder if she slept in the hat.)

 Now, if only her fashion sense would lend itself to clean clothes.

The Laundry Mountain

Laundry has become an unending task.  Every day brings more and more.  Sisyphus and I have something in common.

 I hadn't really ever counted the number of loads in a week until this last week.

28 loads.

My husband and I together had 5 loads:  whites, colors, jeans, towels, bedding.  One load for kitchen towels, placemats, napkins and such.

The rest was all for Mom.  One person, 22 loads.

Unbelievable.

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. 

It is Soooooo Quiet

No bowls of milk.   No waiting for a ride.  No pacing.  No fussing.

She is happy today....and THAT makes me happy.

The Bowl of Milk

It happened again today.  I went downstairs to the dining room and found Mom's place setting all arranged on the table:  placemat, knife, fork, spoon, napkin, glass, bread plate, soupbowl.  Nothing  really odd about that, except that she was nowhere to be seen, and the soupbowl was totally FULL of milk.  Milk.   Right to the brim.

This happened twice last week, but the bowl was a small, dessert-type bowl.   Both times, I just dumped the bowl and went about my day.   Today, I thought I might approach the mystery.

Since I was busy fixing lunch for the two of us, I left the bowl in place.  When she came down, I pointed it out and asked if she knew anything about it.   She didn't.  So I tried a different approach and asked if she had been wanting a bowl of cereal at midmorning.   She didn't. 

I suppose the muffin elf, who is still very busy here in the house, is thirsty but doesn't use a glass.

I think I am missing the message.  Where is Hercule Poirot when you need him?

A Bath????????????? !!!!!!!!!!!!!!!!!!!!

What is it about little kids and little old ladies with AD? Is it *really* so awful to get clean?

The Muffin Elf

Okay, I am catching up today, so two posts.

A confession: My mother is a Muffin Elf. She loves muffins. Cranberry-orange ones. She eats them...lots of them. Every day. About 4 of them, actually. In secret, most of the time, although we know she is doing it (we buy the muffins, after all). They just disappear from the box and she has no idea where they have gone. Ever. Sometimes, she shares with the wonderful woman who does respite care for us. Mostly, not.

Her other favorite food: Nutri-Grain bars. Several per day. A whole box, if she could.

Mind you, she is VERY thin. You would think that she would gain a lot, but she never does.

She still eats her dinner. For a while, she just pushed it around on her plate, but lately she is actually cleaning her plate.

We've noticed that she is is pretty indifferent to most foods, but loves things that are sweet. So, add a tiny touch of honey to her carrots and she eats them up; a dab of apricot jam on her ham sandwich and she will finish it, instead of eating two bites. Although the constant sweetening doesn't appeal to my husband or to me, she finds it irresistible and it helps her to get a better variety of foods down. She still hates vegetables, can't stand fruit (unless it is in jam) and is, at best, indifferent to most everything else. She only picks at meats, pasta is ignored. "I'm not hungry," she'll say, immediately followed with "Is there anything for dessert?"

Her doctor says it is probable that she can only taste sweet foods. And, if she eats at least something nutritious every day, that the muffins and bars are okay.

She admits only to eating a single muffin every day. But the muffins disappear. The bars disappear.

There must be an Elf.

The "Ride" is undependable...

For the last several months, Mom has kept her suitcase and a small overnight bag packed and ready to go. She keeps a close watch on the driveway and door, expecting her ride to appear at any minute. The ride/driver is apparently a "cousin" of her mother's (which means he would be at least 110 years old). I don't know if he was a real person or not. I had never heard of him before she developed AD.

Of course, he never comes. In my effort to "go along" with all her notions, I've been just watching and seeing what she does. A week or so ago, she was again waiting and pacing back and forth in her impatience for him to arrive. After a few checks at the door (which we have now alarmed) I went to see what was up.

When I asked what was going on, she said she was waiting for her ride.

I "ummmm-ed" a bit, then I finally said that I didn't really expect him.

She bristled. "Why not? she demanded.

"Well...I've been thinking about this," I replied. "It seems that he's not very dependable about coming. One day, he told you 10 times; another even more, then Monday, it was a half-dozen, yesterday 9, and now this is the 14th time today. If he really meant to come, wouldn't he be here by now? He must be having a tough time getting here, at his age."

She actually thought about this for a while. Then, I almost fell over when she agreed.

She picked up her suitcase and went back to her room. The suitcase and overnight bag are still packed, in her room. But, she is not hanging out at the door at all hours of the day and night.

Going along may actually work.

Night Watch

The portal strikes again.

Last night, after mom had gone to bed, my husband discovered a packed overnight bag in the entry hallway. Mom's. We figured she was planning her "escape" and put the suitcase out in the garage, to slow her escape if nothing else.

An hour or so later, her bedroom light began to go off and on.

(The design of our house is of a central conservatory, with sliding glass doors from the upstairs bedrooms leading to balconies within the conservatory. Since the ceiling is cathedral, the area above the glass doors is also glass, and though curtains cover the doors themselves, the glass above is not covered. Thus, lights in her room shine out through the conservatory, and into the area above our balcony doors, and we can see them easily.)

When the lights finally settled down, I heard stealthy creeping along the hallway.

(We leave our bedroom door slightly open, for the cat to come and go, and to keep an ear out for her wanderings.)

I got up and through the crack in the doorway, saw her standing at the top of the stairs, looking out the window above the front door. She was dressed and --for once -- wearing a coat.

Then:
Me: Do you need something, Mom?
Mom: No.
Me: Why are you standing here?
Mom: Waiting for my ride.
Me: Ride? In the middle of the night?
Mom: Friends are coming to pick me up. They just called and are on their way.
Me: Who are these friends?
Mom: People I know.
Me: Do I know them?
Mom: Yes, they have come here twice before. We had a picnic.

(Not true. One, she has never had visitors from Florida here, and two, I confess that I am NOT a picnic sort of person. I can't sit on the ground, have terrible allergies, am very pale and sun sensitive, and much prefer a screened porch. Picnic? Not in this lifetime.)

Me: Oh, what are their names?
Mom: Um................
Me: Where do they live?
Mom: Pensacola.
Me: Are they coming from Pensacola to pick you up, then?
Mom: Yes. They said they would be here in a few minutes. They just called.
Me: You do realize that Pensacola is a three-day drive from here, don't you? Do your friends know you are living in MA?
Mom: Yes, they were here before. I am going to spend the night with them.
Me: Well, we are having an ice storm. They may not know that. Perhaps we should call them back and tell them to pick a day with better weather.
Mom: Okay.

(At this point, I go and get her cell phone. No calls have been received since the 15th. When I point this out, she says it was on the "other" phone in her room. So, I go look, and yes, she does have a land line in her room. It has NO WIRES at all. The handset is not connected to the phone, the phone is not connected to the wall, except for electricity and thus a clock display. No calls.)

Me: Maybe you were dreaming?
Mom: NO! I WAS NOT DREAMING!
Me: Tell me more about these people.
Mom: Um................ (long pause)...........they were friends of Daddy's.
Me: Your father or mine?
Mom: Not MY father!
Me: My father, then. Hank. His age?
Mom: Um........... yes.
Me: If they were his friends, and the same age, they must be pretty old, then. Dad would be 90 now. It seems odd that folks that old would be planning such a long trip in the middle of the night.
Mom: No. they want me to visit, spend the night.
Me: You said you were going to spend the night with them. Does that mean you were going to Pensacola with them? Taking a trip? They are driving three days here to get you, then three days back to Pensacola for you to spend one night with them?
Mom: No.
Me: So, a longer visit, then? A week or so? Or to a hotel around here?
Mom: No.
Me. If I am understanding this correctly, you are planning to go off, in the middle of the night, without telling us, with people whose names you don't know, to some location you don't know, for some amount of time that is not clear, to spend the night with them?
Mom: I know them.
Me: Then what are their names. I am concerned for your safety.
Mom: Um........ (suddenly looking very sly) No.
Me: No what?
Mom: No names.
Me: Because you can't tell me?
Mom: No. (Now looking VERY sly)
Me: Or because you don't want to tell me?
Mom. Maybe.
Me: Now, if it takes them three days to get here, do you plan to sit here at the top of the stairs for all that time?
Mom: Yes.
Me. Well, since I can't let you go off with someone I can't remember, I guess I will just have to sit here with you.


(Now, I must tell you, I have read a lot of the advice about dealing with Alzheimer's patients and they all basically say to go along with everything they dream up. Go with the flow. I even made myself a wall hanging to remind myself of that mantra. But...I have a really tough time with it, and by this time (an hour or more into this scene, in the middle of the night) I am really losing my patience, my temper is flaring. I *want* to tell her that this is all a hallucination, part of a disease, all made up in her mind. I'm exasperated and completely out of patience. Deep breaths. Count to a thousand. We are keeping my husband awake and he has to get up and go to work in just a couple of hours. Not good.)

(Some time passes, I regain some composure.)


Me: Well, it seems that they are delayed in getting here. How long shall we wait before we give up and go to bed?
Mom: Half an hour.
Me. Okay, let me get my cell phone so we can keep track of the time.
Mom: Um.........
Me: Let's start the half hour now.
Mom: Okay.

(The half hour passes. I have given updates every ten minutes.)

Me: Well, then, the half hour is gone and they are not here. Perhaps they have given up. What shall we do next?
Mom: I guess, just go to bed.

(She gets up from the bench, teeters off to her room, and firmly shuts the door. Not *quite* a slam. Close. I go back to bed. She continues to put the lights off and on for about an hour. I stay sleepless for a much longer time. Morning comes. The suitcase, never mentioned, is still in the garage. After a while, I will empty it and quietly return her clothes to her with her clean laundry. We won't ever bring it up with her.)

Another day, another night, another adventure. Dear spirits, I'm tired.

The boys in the Truck

First thing this morning, Mom appeared at my bedroom door with a request that I take her somewhere. Where? She did not know. But she HAD to go. Someone had passed away, a lady, and she had to go to comfort her boys. What is the lady's name? Doesn't know, can't remember. What are the boy's names? Doesn't know, can't remember. Last week, it was one of the boys who passed away and she needed to go see the lady. Apparently, reports of his death were incorrect.

How did she find out? Her TV (the portal). She says that since I can't take her to somewhere she can't help me find, she will contact the boys (through the portal, naturally) and have them pick her up. They have a big truck. I said okay, but when they came I wanted to meet with them to find out where she would be, and maybe I could give them a sympathy card for the loss of their mom.

It will never happen, of course. But I am slowly learning to "go along" with her hallucinations. Last week, I argued, and it did not go well. Everything I read about AD says "don't argue about anything" unless it is dangerous for her or others, so I am biting my tongue (IFI still have one?!!!!) and going along.

I suspect the entire thing is because I have a good friend whose husband passed away on New Year's day. When I told my DH, she was in the room and said that she felt very sad. That probably sparked the first hallucination -- of the boy's passing. Yesterday, we went to the funeral, and now it is all once again fresh in her mind.

When she left my room, I pointed out that she had not yet had her breakfast and that she certainly couldn't go off with an empty stomach. So she is eating now, and will probably forget the whole thing soon. I hope so.

Now, to just hope that a truckload of 50-year-old boys don't appear in my driveway...........

Introduction to the Portal

The Portal. That is what my husband and I call the inoperative digital photo frame in Mom's room. She spends hours staring at it every day, and hates to be interrupted. She sees things in it that no one else can see. They are real, to her. More real than any of her "real" surroundings.

The frame used to have photos in it. Not now. She took the memory card out (it was a dead battery, she says) and threw it away. Or hid it. She has repeatedly taken the battery out and replaced it - backwards. Or she hides it. We have a lot of treasure hunts.

So, though the rest of us see nothing on the blank glass, it is fascinating to her. She has created a whole world of new relatives and friends in the frame. She has shut out all of her "real" friends -- the ones who are alive and well, and concerned about her well being. The imaginary ones are more real to her, more deserving of her attention and affection. It is sad, and hard for her friends to understand.

These portal friends are becoming worrisome, though, because they seem to be luring her out to share their adventures and she is starting to talk about going places to meet with them. Places outside the house. And she is becoming more and more secretive. I'm afraid that she will begin to wander.

I know that this is a phase, and she will eventually go beyond this stage of the disease, just as she has progressed beyond the seemingly endless repetition of stories and questions.

I wonder what tomorrow will bring?