Note: This will be the third and last column on aspects of caregiving. Next time I will finally turn my attention to Cats.

Note: This will be the third and last column on aspects of caregiving. Next time I will finally turn my attention to Cats.

I come from a willful family, sometimes a frustrated family. Where there’s a will, there’s not always a way.

My mother, oldest of a large family in rural Idaho, was pushed into the work world as soon as she graduated from high school, to help provide for the family. She took business courses, competed for Civil Service jobs, and was one of those chosen from the state to go to Washington, D.C. to work for Jim Farley, Postmaster General in the expanding FDR administration. She sent money and gifts back to her family.

She met Dad, fresh from Seattle, at the bridge table.  Both were competitive players.  He saw her beauty and her card smarts and maneuvered to partner with her the second time they played.  Later they went dancing.

Dad had a drive that eventually led him to head up the fisheries part of the Fish and Wildlife Service.  He had ambitions of building a national aquarium off Haines Point in D.C., but funding dried up with the advent of the Vietnam conflict. The design he helped construct was picked up, revised and completed in Baltimore--and named the National Aquarium.  To the end of his days, he refused to visit the site.

Mom turned her attention to us kids. Unspoken was the sense that we were to compete or excel in some way.  Like Mom, I was the oldest who earned money--paper route, lawn mowing, clerking at Christmas, life guarding. later clerk-typist jobs in government.  My brothers were good swimmers and placed in meets held throughout the summer.

We competed within the family as well.  Ping-pong smashes, killer badminton, croquet balls sent into the creek.  It was fun, except for the time my wife played badminton with the family for the first time and was actually felled by a birdie smash that struck her in the forehead.

The downside was that failures--to bring down one’s time in a swim event, for instance--were due to not practicing enough or improper techniques.  Mom always had difficulty understanding that her kids had limits.  When a grandchild was born with genetic defects, Mom expected him to progress faster and farther than he did. She felt that more effort in working with him would yield results.

All this to say that I don’t think family dynamics set me up to become a caregiver.  I have been helped by the novel (and film) Still Alice and The 36-Hour Day, the most complete guide I’ve found for caregivers dealing with Alzheimer’s and other forms of dementia. (It’s in its 6th edition, Johns Hopkins University Press.).

Those books and the advice of Hospice aides and nurses have helped.  But while I may seem to succeed in seeing to my wife’s needs, I have periods of irritation or anger--which I expect is how my family “taught me” to deal with stress.  Activity that shows competence may be a way of blocking the feelings below the surface.  For instance, I usually grieve in piecemeal, short bursts well after the fact.

But during the caregiving, feelings are there. And sometimes they emerge whether you want them to or not.  Not always credible feelings either.

Dementia creates a sort of child in an adult’s body.  The hands reach for things, often to bring them to the mouth.  Objects, fingers need tasting.  Place mats even, no matter there is a cup or plate on them. Sink your teeth into a newspaper.

You place newspapers around the place mat, cover the table with a vinyl tablecloth.  Routinely pick up soaked newspapers, sweep up dropped food and wonder if you can get by wiping up a few tiles, as opposed to mopping the whole darn floor.

You instinctively reach to catch the noodle falling from her mouth or the piece of cereal that drops off a tilted spoon.  I recently got a laugh from a friend when I instinctively reached to catch a drip from her soup spoon.  Sorry!

Seeing an adult you know, eyes that seem to register people and objects, one can’t help but think that some spills and messes are from a willful adult acting out, like a child, rather than an adult who is a kind of child.  Do we really need to turn our coffee cup over to show how little coffee is left?

“No.  Stop that.  Do I have to rap the back of your hand? Sit up!  Open your mouth, please. You’ve got to eat!  Don’t go to sleep in the middle of this meal I prepared!”

You learn to introduce one food item at a time, and clear each dish when they are through messing, eating all they are going to eat.  Only small amounts of liquid in cups that won’t be broken if they hit the floor.  Cups with covers?  Only if they can find the drink hole.  Cups with straws?  You may need to locate the straw in the mouth each time, so they won’t stab an eye with the straw while trying to get a drink at the edge of the top.

Why can’t they retain the memory of where the straw goes? (In the mouth!)  Is it unreasonable for me to expect more?  (Probably. Talk this out--with yourself!)

I consider getting baby bottles, with nipples.  I consider getting plastic bibs rather than depending on the hand towels to catch lap-bound food.  I consider a thin plastic floor covering where she sits, one that I can roll up and throw away after the evening meal.

In warm weather, I wonder how it would be to set up a table outside.  The birds and squirrels would get the leavings.

When I discover gel-caps on the floor, I am happy we have a picky cat rather than a voracious dog.  I sigh and tell myself that here’s another drug I will have to pull apart and mix  in the chocolate milkshake.

I recently viewed a French film about an elderly couple, focused on how the husband deals with his wife’s gradual descent into a semi-vegetative state.  It’s called “Amour,” and indeed the couple’s marriage is based upon lifelong love and respect.

But it also shows the dark side of solitary caregiving, how love can create a sense of sole possession of the loved one.  The husband fires the two nurses and doesn’t respond to phone messages from his daughter asking how her mom is.  When the daughter appears unexpectedly, she finds the door to her mother’s bedroom locked.  Although he unlocks the door, the husband tells his daughter that she needs to understand that she is no longer concerned with her mother’s condition!

We see familiar scenes with his wife, as he tries to get her to eat more and drink more, helps her up from the toilet, sings a song they both know, though she can only articulate a few words, holds her hand as she lies in bed.  In the scene with his daughter and a scene where he fires a nurse for no cause, we see a fraying of his temper.  At one point, when his wife won’t sip water, then does but spits it out, he slaps her--and immediately apologizes.

Without revealing the ending, I recognize a path that many of us could take, if we shut ourselves up with our loved one, without leaving the house or receiving visits from nurses, aides, or others who might help.

I could never agree with one of Joseph Conrad’s characters who dismisses most moral behavior as clothing we wear to suit the occasion.  But I understand this: Remove us from a  society of caring, moral people and our behavior just might deteriorate.

Either way, it will end for the caregiver and the person cared for.  But one way is happier, enforcing a bond with the rest of humanity.

I am certainly thankful for all the support I’ve had.