A Spoon Full of Sugar

Maybe you've seen the movie where Mary Poppins sings about a spoon full of sugar helping the medicine go down.  If only it were that easy.  It is never easy to get a reluctant patient to take medicine be they children or older folks or the family pet.

One of our first clues that Mother was suffering from dementia was her refusal to take any kind of medicine.  For most of her life she has only taken the occasional aspirin and her vitamins and calcium.  As the Alzheimer's set in, and she had to begin taking more medicine, getting  her to take her daily meds became a struggle.  If she were handed the pills, she either tucked them in her cheek, spit them out, hid them or threw them.  Many a time I would find little stashes of pills around her kitchen.

At the same time, she sometimes took her pills too close together.  She would remember to take her pills, and then a few minutes later she would get up to go take them again.  Since someone wasn't with her all of the time, this became a major concern.  Our initial solution was to get her an automatic pill dispenser.  This machine was on a timer and would beep when it was time for her medication, and the little slot would open and there the pills would be.  This worked for a short time, but soon we still had the same problem.  She would take the pills out of the machine, but she would stash them around her kitchen.  The problem then was she would see them at a later time and take them, but it might be right before or after the next dose.

The problem worsened, and it was one of several issues that led the doctor to tell us it was time to place her in nursing facility.  Once there, of course, her meds were monitored by the nursing staff.  However, the problem continued. The pills would be in the cheek, stashed around her room, spit on the floor or hurled at the staff.  We tried putting them in pudding, jelly, jello, etc. but that spoon full of sugar didn't work.  Now her medication is powdered and placed in a paste, which she takes from a wooden spoon like we used to use when we ate ice cream from the little cups.  From the look on her face, it is not like ice cream or a spoon full of sugar.  It reminds me of pinching a cat's cheeks to get it to take a pill.  She takes it but licks at the roof of her mouth.  At least we know she is getting her meds appropriately, but I wish Mary Poppins could sing Mother into a happier way to get the medicine to go down.

Sitters and Walkers

There seems to be two kinds of ambulatary folks in the Alzheimer's unit - sitters and walkers.

Walkers pace the hall.  Some "see" things on the floor and stoop to pick up the imagined object.  Some look for spouses or children and may stand at the doors and pound on them.  Mostly they just walk endlessly from one end to the other occasionally sidetracking into the lounge or dinning room or someone elses room.  They tend to be quiet, mumbling only to themselves or occasionally asking a question.

Mother is in the other group.  She is a sitter.  She sits in her swivel rocker occasionally, but mostly she sits in the lounge and sips a glass of tea or lemonade and watches people or the tv.  I often find her there just sitting and watching.  Another resident from the general population comes in on Wed. afternoons to hold "church" for the Alzheimer's patients.  Sometimes she really gets into church, and she shouts Amen and slaps her knees.  Other times she jumps up and says,"Get me out of this.  These people are crazy."  She sits and visits with the aides and nurses.  Sometimes they work puzzels or look at the ads from the newspaper.  But most of the time she just sits in her world of the moment.  That is mostly what she has - just the moment.  Yet, she seems to make a life and some sense of those moments.  She can't remember anything for more than a couple of minutes, so sitting and experiencing each moment is all she has. The joy of the moment is real joy, but the moments of fear are real fear too.  Yet I know that it is all fleeting - its only the moment.  She has to live in the present and the distant past because that is all she has.  She sits and waits for the next moment.

Running Away

Mother has always been something of a go-getter.  She is independent and growing up on a farm, she had plenty of space to explore and play.  But as a toddler, it wasn't safe for her to wander about without a parent around.  So, when her mother was working in the garden or hanging clothes on the line, she rigged up a baby "leash" to keep mother safe.  She put a belt on Mother and then tied a rope to the belt and hooked the other end to the line of the clothes line.  Mother could run up and down the length of the clothes line and out as far as the rope was long.  She had the freedom of some movement, but she was safe, and her mother could get her work done.

Mother is once again on a type of leash.  Early on in her disease, she kept saying she wanted to run away.  It didn't matter where, she just wanted to run.  I think she felt changes in her mind and the only response she had was to "run away" from what she felt.  She would sit and talk of "running away" to Hawaii or to Idaho.  Sometimes she said she just wanted to get in her car and go, but she didn't know where to go.   Once she even drove her car into the far pasture on her farm just as it was getting dark.  She wasn't sure where she was, but she did make it back to the house.  This has been a major issue as the disease has progressed.

When she first went into an assisted living facility, she did get out and run away.  One January day she inserted herself into a group of visitors who were leaving, and she slipped out the door with them.  Staff noticed and followed her, but she led them on a merry chase into nearby buildings, through parking lots where she checked for an unlocked car to get into, over a vacant lot where she picked up a piece of PVC pipe and threatened the staff that followed her and finally into a hotel where she tried to "check in".  She wasn't  wearing shoes only socks on her feet and had walked through mud and crossed a small creek.

Now she lives in a nursing home in the Alzheimer's unit.  Her "leash" is an electronic ankle bracelet that sounds an alarm if she gets out.  For a while she still tried to run away, but she could be bribed to go back in with chocolate.  Now she is fairly content where she is and never tries to run away.  In fact, many times she is not comfortable going outside.  It is too overwhelming. Now she is safe, but I miss that spunky woman who knew what she wanted and wasn't afraid to go find it.

Suffering, Suffering, Suffering

When I was small I would sometimes get so scared at night.  The clothes in the closet, a chair, a toy on a shelf all took monstrous proportions and frightened me.  Mother would come in and sit with me and reassure me.  I remember.  I could go back to sleep because she was there, and I knew I was safe.

Today Mother was scared and confused.  She had ended up in another resident's bed. (Not at all uncommon in the Alzheimer's unit.  People forget where their own bed is and take the first one they see.)  When I arrived I couldn't find her, but the aide told me where she was and said they had tried and tried to get her to move, but she wouldn't. I found her and when she saw me she said, "Oh, I'm in trouble."  She knew she was not where she belonged, but she was unable to do anything about it, and staying in a comfortable bed was safer than moving to what she perceived as an unknown place.

The bribe that usually works is a Coke and chocolate.  It worked today. After much coaxing by telling her that I had brought her a Coke and that her room and her bed were just across the hall, she got up and baby-stepped across.  How terrifying it must be to not know where you are.  Her own room was just four or five steps away, but she was utterly lost.  When she saw the Coke she exclaimed, "Oh someone has left me a Coke, and it's in my room."  After the Coke and chocolate, she curled up in her own bed and was cold. I wrapped her fuzzy green blanket around her, tucked her in and sat very close. "I'm suffering, suffering, suffering.  Terrible, terrible.  My mind, my mind.  It's a bad day."  And it was. 

I tucked her in and sat with her until she was sound asleep; her mind at ease at least for the moment.  It was my turn to chase away the monsters.  I wish I could keep them away forever.