Fun in Kenland

Mom's bathroom
Bathroom creatively locked. Decorations by Ken

“How are things going in Kenland?” My brothers and sister asked me when I stopped by to see my mom in the hospital. It has been an enlightening experience. With 15 years of teaching special education, and caring for my niece and her mother, both with special needs, I felt pretty well prepared to take over with my dad, but this is a new ball game.  The following are bits and pieces of what I have experienced and observed after accepting my emergency assignment:  To find caregivers for my father while taking on my mother’s caregiving responsibility.

My career choice is that of a teacher (now retired) and certified in special education.  My dad is not one of my students, though my attitude toward caring for him is similar.  As part of my education, I was taught that the person always came first before the disability. We described a student as a child who has Autism, not an Autistic child. So I have always thought of my father as a person with Alzheimer’s, not an Alzheimer’s patient. (But I don’t mind referring to Alzheimer’s caregivers; it’s what they do, not who they are.) My father has special needs, but he is still my dad, and the man that he is/was continually peeks out from behind the Alzheimer’s.

With caregivers coming and going, and friends and family in and out of the house, the front door should have been revolving.  However, it is always locked because my father has changed since the accident and we all worry that he might now wander the neighborhood if he gets outside, so everyone must ring the bell to gain entry.  My parent’s doorbell plays “It’s A Small World” like a merry-go-round. It rings easily when someone who is outside accidently bumps it.   “Small World” also fills the air as a constant stream of visitors keeps the doorbell “alarm” going, adding to the carnival atmosphere. If I hadn’t reason enough to hate the song before, I sure do now.

There are at least five phones in the house, but only the phone in my mom’s office and my daughter’s bedroom work, which keeps Ken from answering the phone. How many messages my mother never received because he speaks into the phone in a completely logical way, giving out the wrong information, will never be known.

Cell phones could be the answer but they have their own drawbacks. Like a crow, Dad loves shiny little things. Electronics seem even more important to him, and can easily be picked up, pocketed and hidden in his own special places, never to be found again. He has no cell phone etiquette (actually he doesn’t even know what they are) but seems to take delight in the look of panic suffered by the owner when their cell phone goes missing. Taking my daughter’s cell phone one day, he held it hostage over the toilet while she cried helplessly from the shower. “I’m going to drop it in,” he threatened, until I came to the rescue.

The bathroom, being full of small important things, is Ken-proofed.  My father was not slowed by childproof locks, so my mother had to go a step further. A puzzle of locking systems that would make Ft. Knox proud keeps him from rearranging or getting into cabinets and drawers which could prove dangerous to his health.  My mother has drilled a small hole through the drawer and the cabinet and a simple nail in the hole keeps doors and drawers 
“locked.”   More complex is the key inside the “nailed” drawer which fits into the padlocks, which hold the chains which keep the major cabinets closed.  In keeping with the new decor, Ken thinks the chains are towel holders and hangs the towels accordingly.

Sleeping hours add to the zoo-like atmosphere of Kenland. Since he periodically proclaims this is no longer his home, despite signs all around to the contrary, he sits up nights in a chair in the living room, waiting for someone to pick him up. No amount of coaxing can get him into bed. He dozes, and eventually gets cold and tired, finally heading off for bed at his own good time.  In order to assure he does no harm in his nightly wanderings, all of the doors in the hall except his bedroom and the bathroom are locked.  Pieces of drapery cord laced through the louvered dining-room doors keep the kitchen off limits. He sits in the dark waiting, but he never gets upset or impatient.   Previously, my mom had told me about his late-night guard duty, so I was somewhat prepared.

Though living in Kenland is not really fun, it has its funny moments. Grabbing my daughter’s sunglasses, left unattended on the counter for a few minutes, gives everyone a good half hour of entertainment as he insists any and all eyeglasses belong to him.   Not being able to see through someone else’s shades, he finally reaches out for his own glasses.  He has his own quirky way of reasoning that is often hilarious, but logical to him.

What we have is a disease:  Alzheimer’s, and that’s what it is. I believe my father’s home is still the best place for him — as of now. Like a naughty little boy he rules the house. Crossing him or arguing make no difference with him in his set ways, so as much as possible we don’t challenge him.  This is not a power struggle with a winner or loser.  Alzheimer’s has no winners, and in the end, only a continuing sense of loss.  Whether Kenland is fun or not is really not the question, because it really isn’t fun.  We just laugh a lot so we don’t cry a lot.   The answer is in doing our best by honoring our father as he once was and by trying to serve him as he is during these last years, and by striving to not only do the best we know, but praying that it is enough.

Originally posted 2010-03-03 06:20:23.

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