Wednesday, August 01, 2007

129 "do I know you?"

I was over my mom's house yesterday dropping some things off for a project we're doing this weekend. She said my dad woke up at (at 4 a.m.) calling her name--"Ann, Ann, Ann." It's rare that he remembers her name.
Later on they were out in the yard and he walked up to her and put out his hand and said, "Hi, I'm Bob Rizza." (Imagine how many times in his life, as a car salesman for over 40 years, 6 days a week, he said and did that, to make it such an ingrained reflex now.) She replied, "Hi, I'm Ann Rizza, I'm your wife." He thought that was hilarious. He had to go and get a piece of paper to write it down.
But an hour or so later, he went up to her again and said, "Do I know you?" (Politely, not meanly.) She said yes, they had know each other for over 40 years. He was amazed at that too, but not enough to write it down.
I have to wonder what really goes on in his head. If a stranger told me he had known me for 20 years (I'm not old enough to have a 40 year friend), I wouldn't blindly believe it. If some guy told me he was my husband, I wouldn't believe that either. But my dad accepts that. "Okay." and moves on. He knows enough that he doesn't remember things to be trusting, I suppose.
But did he ask me who I was when I got there? No, he just stood up, said, "Hi! Good to see you!" and shook my hand (a typical Bob greeting to anyone who is even remotely familiar to him.)
Aside: Today is the 1 year anniversary of my cat Zen's death. :(


Mauigirl said...

He must have some idea that it is probably true that he knows people that he no longer remembers so he accepts it. My mother-in-law is still coherent enough to say sometimes that her "head isn't right" - so she knows. So I think that's why she accepts what you tell her, and why your father accepts it too. Have you read "Into the Labyrith"? It was written by a high-functioning person with Alzheimer's from her own perspective and it gives good insight into how her world started to unravel. It must be terrifying.

Mauigirl said...

Sorry, it's "Living in the Labyrinth" - here's a link to Amazon.

Patty McNally Doherty said...

Mauigirl, I think you're exactly right. The terror of it is evidenced in the people who live with and care for the Alzheimer's victim as well. Oh my god, we would say, dad has no idea who mom is! Or why is he being so mean to my brother, he LOVES my brother. It was a terrible thing to watch. But after so many years of it, my father had this disease for eleven years, it became a way of life for us.

We had to learn ways of coping with his lack of reason and understanding. We became masters of agreement. Even as we led him to do things he didn't want to do. For instance, going into the kitchen to eat, he would tell us the entire way that he didn't want to eat, and we would nod and say it sounds like you don't want to eat, I don't blame you, I wouldn't want to eat my cooking either, but when he saw the sandwich on the table he would gladly sit and eat. Imagine the alternative scenario - he would say I don't want to eat. We would say Of course you do, you're hungry. You have to eat. You haven't eaten all day. Don't be silly, don't you remember you LOVE my cooking. The latter approach produced frustration and anger, the former approach produced, well, the desired action which is what we really wanted.

Picking up clues became our salvation. What were the issues that created tension and anxiety? Mirrors were a big obstacle. He didn't know it was his own reflection, instead he saw "that guy" as a threat and wanted to hunt him down and eliminate him. Our solution was to paint the mirrors in the house, cover the car with a sheet, and block his view of store windows when we went out. He NEVER went into a restroom alone. Quite an accomplishment, considering my mother, my sister and I were his caregivers...

I can't stress enough how much the tension level dropped when we accepted he had no memories available to him that would explain who we were or what we wanted him to do. Instead, we allowed him to feel in control of his thoughts by encouraging WHATEVER he said to be true and factual - we re-introduced ourselves to him as if we had just met him, we concurred that going to bed with his shoes on was a fine idea, we even reassured him that all would be well, the biggest lie of all.

Were they lies? Yes. My mother had the hardest time with this approach, having lived with him so many years and always being truthful, the thought of lying to him, when he was sick and vulnerable, was impossible. My sister and I, more familiar with "lying" to him as kids I guess, had a much easier time with it.

He was loved throughout his disease, he just had no real idea who it was that was providing that love. And come to think of it, did we really know who he was anymore?

A familiar home of loved ones turned into a unfamiliar home of loving strangers, it must have seemed to him. Terrifying on one hand, but once you get used to it, it's much better than the alternative of reminding them constantly of how little they know anymore.

Hang in there, if only by your fingernails. We made it through eleven years, it can be done. But it changes you for the rest of your life.


e said...

Bert, thank you for blogging your journey for us to follow. I've spent the last month or so reading and I'm sorry to say that it is rather like a train wreck... you know what will ultimately happen, but you just cannot look away...
I've never been close to or spent much time with my mom (at least not since my teen years). It's not that she was ever horrible to me... I'm an only child and learned early that I could not realy count on her, so I've worked around that and this is the result.
Last year, my husband and I took my mom on a trip and it became obvious how forgetful she was. Nearly 12 months later, we are finally a little closer to a diagnosis, but not before completely screwing ourselves out of the possibility of purchasing Long Term Care insurance (once memory loss or dementia is the medical record, you are SOL... but that is one of the many things the NO ONE tells you about dementia). Mom has now moved in to a trailer on our property and is experiencing 'delusions' of someone singing at night and 'rubbing' on her trailer which we feel are an unconcious manipulation to try to get us to move her into the main house with us.
In our case, mom has always been somewhat paranoid. She had a mental breakdown of some sort when my dad and her mother died within a year of each other. I'm afraid that she may *never* really have been "right in the head". My dad always used to joke about her absentmindedness (>25 years ago). She was always fanatical about locking and chaining every gate and door that we had. And I can't even tell you how much money she has given away because she "doesnt want to deal with it" Starting with most of my dad's life insurance and ending with the proceeds of some property that her mother left her in Mexico. I wonder if she ever gave any thought to how much her family could have used that money--if only to take care of her?

I can't have her in the same house as my husband and I, but what else can I do? She has health insurance, which is evidently worthless in cases like this, and a small pension from my dad. No Social Security and just enough income to put her over the poverty level. While "skilled nursing" is available for $1800 or so a month, "Memory Care" facilities are triple that cost or more. While I am certainly NOT an advocate for nationalized health care, I would like to see some regulation in the industry. I have worked in health care for the past 16 years and the amount that patients are charged in many cases is blatant highway robbery. HMO's are absolutely the opposite of health care--come on, they pay the provider to NOT see you? And an aspirin or tylenol in the hospital costs $12? But no long term care insurance if you need it... that would be OUTRAGEOUS. The whole situation is just so frustrating and convaluted I don't know where to start.
Please keep telling us about your family's journey. It really means a lot and provides some perspective. I wish you and your family all the best possible. You certainly deserve it.

e said...

Oh yea... and I am ANGRY... angry that just when my husband and I are getting to a point in life where we are not living paycheck-to-paycheck, where we can finally have one of us quit work if we want and build the little house in Washington that we've been dreaming of for the past 20 years... angry that the very conscious decision we made to NOT have children so we could enjoy a relatively carefree life has basicly been wasted.... now we have to deal with THIS. Put all our dreams on hold until WE are too demented to enjoy them as well? To take care of someone who will eventually not remember our names and think that we are stealing from her? That really SUCKS.

Anonymous said...

My Mom also has Alzheimer's and I've been amazed at her blind trust as well.

She lives with us and although I don't hear 'Do I know you?" I do hear "Who are you again?" more times in a day than I can count.

I just started a blog about my life with Mom.