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The Living Room Relationships My Demented Weekend
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My Demented Weekend
Is anybody else coping with dementia? Here's my story:

There I was last Friday, driving a rented car that handled like a marshmallow along a 6-lane California freeway. I was bleary eyed from getting up at 5:30, which was way too early for my 7:30 flight, but sheesh I was nervous. I was going to be completely in charge of my father's care for the first time ever - in my life, and since his diagnosis with Alzheimer's a little over a year before.

I couldn't find a radio station I liked and couldn't figure out how I was going to get that huge rental up his tiny mountain road. (Note to self: "economy" does not mean "compact." Used to be when you paid less you got a small car!)

My stepmother had been sending messages for the past year. Dad was "belligerent." She was thinking about putting him in a "day program." He woke her up at night. He drank too much wine and got "abusive." This one got an instant reaction. "Was he physically abusive?" I asked, trying to wrap my mind around the image of my father raising a fist. "No, he was verbally abusive." "Did he swear?" "No, but he did raise his voice.” She couldn't get anything done because he "shadowed" her. And finally, she’d had enough. She was going to a resort for the weekend and one of us had better show up by 1PM Friday.

I booked a flight, then got out the “living with dementia” book collection I had accumulated over the past year.  One entry caught my eye, “Dealing with inappropriate sexual advances.” My father had flirted with me briefly on my last visit until he realized who I was and shrank with embarrassment. The book advised that you, “Firmly remind the patient who you are,” while keeping your distance. Keeping your distance was also a good strategy when they were angry.

Keeping our distance is something my dad and I have always been good at. We never talk about things – though we talk incessantly. We smile and nod and comment on the weather and the pets and the garden and the food and the car… And somewhere in our hearts of hearts we know that this was how we said the things that matter. That we love each other but don’t know each other very well and don’t really care to… know each other very well.

When I arrived my step-mom radiated anxiety. She had emailed instructions, did I get them? No. She had sent them to my work address. But I checked the address in my extra half hour that morning and there was nothing. Unbelievable. She printed out 3 pages of instructions. My dad is on an incredible regime of nutritional supplements that she has crafted (I conclude) to give structure to their days. She advised that I watch carefully to be sure he swallows them because he has a way of putting them in his pocket for later. Wine should be kept to a minimum, but he could have plenty of coffee. Coffee’s good for him, but wine is not - lots of instructions and dire warnings about failure to comply. The cats weren’t allowed outside because they might get hurt. Then she hopped in the packed and waiting car and drove off.

In the newly quiet kitchen Dad and I looked at each other, shrugged in unison, and went for the ice cream. She didn’t say anything about no ice cream.  So that was the new relationship -- my dad and I, two kids trying to figure things out. My job is to remember my step mum’s instructions.

He doesn’t remember things from one minute to the next, so we were never at a loss for something to talk about. “Where are the cats?” “What time is it?” “Can you believe that thermometer says 100 degrees?” “What do you want to eat? “Can the cats go out?” This was hard because those cats WANTED out. They parked in front of the gate, peeked underneath to watch shadows moving outside and twitched their tails in irritation when I refused to open it.

We didn’t do much - went to Safeway for more ice cream -  ate everything in the fridge –bought more food - visited the local winery. Drank way too much wine. Sometimes he got scared because he couldn’t figure things out. He thought he was visiting his father’s house, so we went around and looked at the family photos on the wall. He recognized some, including my mother. He wanted to know what happened to her. She died 2 years ago I explained a few times. Mostly he was amazed that his father had accumulated and saved so many of the pictures he must have sent him. So for the weekend my dad and I lived in his father’s home. Only it wasn’t. Dad said to me several times, “People keep telling me that this is my home. So I guess my dad has passed away. It seems vaguely familiar, but I know I haven’t been here very long. I can’t find anything!”

He did wear the same clothes all weekend, and neither one of us showered. I went to the computer periodically to check emails from my anxious students, who had their first assignment due Monday. When I did he shadowed me. He sat still and perfectly erect looking out the bay window in the office. Once a couple of mule deer walked by and he commented on the male’s rack. Once he wandered down the driveway. I rushed out and found him staring at the rental car looking scared. “You OK?” I asked, “Not particularly.” He was trying to figure out whose car that was. I said, for the hundredth time, “This car I rented is a piece of crap. It handles so poorly that I almost ran off the road coming up here.” I discovered lots of ways to tell him what he needed to know while sustaining our mutual denial.

Once we set out for a walk. My dad used to hike for hours through those hills. He had secret trails all over. One neighbor got tired of his intrusions and put a “Private Property” sign right where dad’s trail entered his land. Years after the signs went up my dad is still wondering whether he shouldn’t just take them down and show that guy a thing or two. But that wouldn’t happen on my watch. Only a few hundred yards up the road Dad decided we should go back along one of his other trails. So we picked our way through a neighbor’s field back to familiar turf.  Neither of us got quite enough exercise.

Bedtime was anxious for him. He recognized the pajamas he’d left on his bed, but didn’t recognize the room the bed was in. After we were both in pj’s and slippers he did his rounds checking locks, lights, clocks, and cats’ water a few times before finally settling down. One night he asked, “Who’s going to sleep with me?” And I explained that the kitty would. And the kitty did – every night, bless his furry little soul.

The weekend passed, at times with excruciating slowness. But there were moments of  good fun. We had some laughs about old sayings. “Farting horse will never tire. Farting man’s a man to hire.” (You can imagine how this one came to mind!) Over Mexican food that neither one of us should had been eating Dad told me about his days in the Merchant Marines. He remembered the name of a woman he dated (Ann Franton) and the name of his liberty ship (the Charles R. Russell.) He remembered partying with his mates in uniform when they were on leave in New York City, and the back-breaking work of unloading cargo somewhere in the South Pacific. We listened to the wind in the trees and cursed at the gophers in the garden. I cooked and he did the dishes and we talk and talked.

One afternoon while we basked on the deck drinking coffee my daughter sent a text, “What are you up to?” I replied, “My dad’s demented and we’re drinking coffee.” She wrote back, “My mom’s nuts and we’re doing homework.”

If I’m lucky I’ll get to do it again, but next time will order a “compact” rental car!
My dad died in 2008-I helped for a five year period in coping with his Alzheimers and although I had some specialised knowledge in the area it was still terribly weird and unreal.In a sense we live in a culture which extols spirit and the individual's essence and although that's a wonderful thing-dementia shows us that we're also part mechanism-all those neural wires that provide the energy to make us who we are.
My father went from strong,ferociously independent man to ghost.Empty shell.
Memory seems to contain all of what we are-without it we float to the void-nothing could reorientate my dad-nothing could ease his pain or fretting.He had no memory of wife,children,brother-none.Not being  a particularly tactile man he had it especially hard as he was reluctant to substitute verbal communication for non verbal.My dad had always loved dogs,so we got him a little,passive stray-he went beserk-assured us all that he hated dogs-attributed feline stealth to it and said that was why it had to go.He was waited on hand and foot-brought shopping-long walks,etc and yet never went a day without accusations of being starved-and in the midst of all this the awarenss which I had was that his distress must be a thousand times worse than any inconvenience that he might be causing us.The unimaginable loss-theft of all that any of us really possesss-all sense of self scattered to the winds-the frustration-the isolation-the pain of such inarticulation.
There were of course moments of levity when his trademark wit half functioned-my brother who works in the post office would come home complaining of tiredness and my dad on being informed of his type of work would opine that lifting letters wasn't too taxing-on other occasions we would ask him why he never married and had children...he'd think and inform us to the effect that it was just something that he'd decided !!!
So your tale with both it's pain and it's warmth resonates deeply with me and at the risk of excluding others....dementia really has to be witnessed up close and personal  to gain even a partial empathy and understanding of where it's at...or rather...not at.
Thanks, Casement, for your understanding. What a poignant experience and you write about it so beautifully...
Thank you,for your very kind comments-as an addendum.......T.S Eliot claims that we don't acquire wisdom with old age-I concur-but he also says that if we're lucky we acquire some humility and I agree with this too-and it amazes me just how many old people we meet(I'm 48,so I suppose I mean 70 and up !)who do seem to possess that humility and I'm not someone who ever idealises either the aged or the young.
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Latest Post: December 30, 2009 at 7:21 PM
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