Riding the Roller Coaster of Alzheimer's

It's no secret that Alzheimer's can be an unpredictable, twisting and turning ride for caregivers. Weeks - even months - of stable behavior patterns can be replaced in an instant by different sleeping, eating, and social patterns.  This experience of dramatic change is a challenging lesson in adaptability and acceptance.

For months, my mother's routine had been compatible with the functioning of our home.  She awoke from a good night's sleep at 7:30am, was freshly clean and dressed with a caregiver's help by 8:00am, and finished breakfast, ready for a morning walk about 9:30am.

The rest of us in the house drew false confidence from this stability.  We made sure that the space Mama needed for her care was free and clear during certain times.  We depended on "normal" nighttime and naptime sleep patterns - for ourselves and for her.  Everyone seemed to be mentally and physically healthy for an extended time.

Then, there was an unpredicted change - no more sleeping through the night, meals off schedule, and only the briefest of naps in the afternoon.  My first response was a sense of betrayal.  I found myself thinking "I did everything I was supposed to do.  This wasn't supposed to happen. Things were going so well!"

I've realized, after years of Alzheimer's care giving, that prolonged calm periods of routine schedules are unusual blessings. Acceptance of his reality comes with difficulty.

Enjoy established routines however long they last and be prepared for change. Accepting the credo, "Expect the unexpected", softens the shock of having to create yet another workable plan.

Overcome Elder Eating Challenges

Here are two tips that I have learned while caring for my mother in our home:

1.  This one helps with the mechanics of eating and helps maintain independence:

My mother has a wonderful appetite.  Her interest only wanes when she uses a fork to pick up food from a plate - especially when peas are on the menu.  I have watched her chase them around for agonizing minutes. I don't know if the reason is a little arthritis, declining coordination, eyesight, or something else.  It occurred to me one day to serve her meal in a large serving bowl, and give her a large spoon to use.  This transition has totally eradicated the frustrating "chasing" problem, and Mama is happily enjoying every last bite without assistance. She has never mentioned or complained about the change in container or implement.

2.  This one helps with the cost of food:

About half of Mama's dinner meals are built around a good quality frozen dinner - usually Stouffers.  Some of them are "too light" on the meat ingredient and "too heavy" on the sauce.  They often need a supplementary vegetable and have larger portions than a small person wants or needs at one sitting.  I have learned to make some important adjustments.

- For the roast turkey and chicken a la king dinners, I add cooked chicken, cut in cubes.  These prepared dinners have more than enough sauce and or stuffing, when mixed with the extra chicken, for two servings.  Every week or so, I cook a chicken breast, cut it up and store it in the freezer, so I have it when needed. This small change, plus the addition of a fresh vegetable has made two meals out of one and really lowered the cost per dinner to something very affordable.

Tips for Talking With Alzheimer's Patients

This morning my mother and I had a delightful conversation.  It started with her telling me about a surprise call she had from her neighbor across the street.  It seems that the neighbor was shopping downtown where she was looking at nice scarves and gloves.  The neighbor said she missed seeing Mama and that Mama didn't need to pay her a special visit . . . that phone calls were a welcome way to stay in touch.  I contributed that I felt the neighbor might be lonely in the big house where she lived alone.  Mama agreed, shared how much she liked the woman, and we went on to another topic.

Our conversation was comfortable and normal in every respect, except that I knew the neighbor had died about five years ago and that Mama lives with me now - not in her old hometown.   It takes some practice and determination to enter the reality experienced by an Alzheimer's patient.  A much more natural impulse is to correct their statements and disregard stories that don't make sense.  Part of the learning process for loving caregivers is to find ways to enter the Alzheimer's world in ways that support calm and stability, rather than generate disruption and anxiety.

Some of my very good friends tried visiting my mother soon after she was diagnosed with Alzheimer's.  After a few attempts, their efforts languished, because they discovered Mama couldn't keep up her part of a normal exchange.  I've learned, since that experience, to prep visitors for a successful conversation with Mama.  Here are some of my tips:

• Act naturally in the greeting and goodbye phases of a visit.  Mama responds normally to the polite "Hello, How are you?  Good to see you.  Hope to see you again" parts of the conversation.
• Avoid questions that require the ability to reflect and remember.  Questions like - "Did you enjoy the weather yesterday?"  "How did you like your birthday gifts?"  "Did you have a cake?" -  seem to create anxiety, because the person is aware that she isn't responding correctly.
• Keep even simple choices to a minimum. Recently, I asked Mama if she'd rather have soup or a sandwich for lunch.  She repeated the question several times, finally became frustrated and discouraged, and offered this reply, "What do you think would be good?"
• Go with their story, if possible.  Try to engage in the story, even if it is patently implausible, untrue, in the wrong time period, etc.  Correcting the story that seems real to them dampens enthusiasm and lowers self esteem.
• Try talking mostly about yourself when you visit.  I tell my friends to describe their holidays, their grandchildren, what they're cooking for supper , where they've been today.  In these conversations, Mama seems at ease and confident that she's contributing - even when the visitor does most of the talking.