Time Is An Asterisk-My Mother’s Battle with Alzheimer’s

 

Three hundred five days ago I started a blog with the goal of walking every day for a year. My year of walking and blogging about it is quickly approaching its conclusion, but for the past three days I haven’t walked. My parents were visiting and my goal was to give my father a break, some time to himself. My mother has Alzheimer’s and my Dad is her primary caregiver.

She can’t walk very well. Her knee bent and twisted from arthritis, she limps and sometimes trips over her own two feet. My 82-year-old father, despite a heart attack, two stents and a pacemaker, runs four miles every other day, but my mother can no longer be left alone so it’s hard for him to carve out time in his day to do the thing he loves. Running, alone, just him and the pavement and the passing scenery. If one day a second heart attack should take him while he is out jogging, he will most certainly die a happy man.

I hadn’t seen my parents since the summer. I live a thousand miles south of them, in sunny Florida. My mother and I spent our time together sitting on my deck, drinking tea and talking, while my father ran, or walked to the beach with his book and a chair.

Memory is tricky. We forget where we put our keys or why we went upstairs. Was I looking for something in the bedroom? Yes, that’s right, I need a sweater.

Get a group of siblings together discussing an event that happened twenty years ago, and everyone has a different story, colored by the feelings and whims of each person recalling the event.

“Remember that time at the lake when Danny cut his foot on a broken bottle?”

“That wasn’t Danny, it was Karen.”

“It wasn’t at the lake, it was at a motel near Niagara Falls.”

You’re left wondering if you were on the same vacation with these people. Sometimes you even wonder if you grew up in the same family.

My conversations with my mother were even more unreliable, a dizzy, endless loop of repetition and confusion. The confusion was not just on her part, but on mine as well. Who is she talking about now? Where is she in time? Does she know where she is right now? And the biggest question of all, does she know who she’s talking to? The answer to that last question was an emphatic no.

There were two main topics we stuck to over a period of three days. She would complement me on how nice my apartment was and how similar it was to hers. She would describe her condo in great detail, as if I had never been there. Sometimes the condo was in Rhode Island, other times New York. The correct location is Rhode Island but she did spend time in New York when she was young. Never correcting her, I just listened, riding the roller coast that is now her quickly declining memory.

Our other topic was her best friend. First some background. My sister Maureen lives two blocks from our parents and sees them often. My mother’s best friend in high school was Arlene Betty. Fifty-eight years ago Arlene was my mother’s maid of honor but they lost touch over the years. I am not even sure if Arlene is still alive.

The memory loop got very twisted when we talked about my mother’s friend.

“My best friend Maureen takes me shopping every Saturday then we go to lunch. She’s a teacher, you know, and she has two daughters.”

“No, she has two sons, Mom.” Okay, so sometimes I did correct. My sister Maureen has two sons.

“Oh, you know Arlene Betty, too?”

Maureen my sister had switched to Arlene Betty, my mother’s maid of honor. I roll with it.

“Yes, I know her. She’s my sister. I’m the one who has two daughters.”

“I didn’t know you had two daughters,” she said, with a big smile. “Oh, I’m so happy for you. I had three daughters but they’re grown up now. My oldest daughter Sheila was very hard to raise.”

That would be me she’s talking about, and the rebellious summer of 1975 when I graduated from high school. Most of my antics took place at college, my mother never knew about them. But 50 years later, I am frozen in time, forever a wild child who was difficult to bring up. It wasn’t me she was talking about, her daughter sitting across from her, but some other me she remembered from long ago.

I didn’t want to make her nervous by correcting her on that one. I can only imagine how frightening it must be, not knowing where you are or who you’re talking to. Or to have a glimmer of the very big thing you just forgot, that this is your daughter sitting across from you.

What is it like when Alzheimer’s creeps in, distorting your memories and the very essence of who you are? How scary is that feeling? Because after all, who are we without our memories?

Early this morning, my parents left to catch their flight home. I made coffee and tea and over a quick bowl of cereal, my mother thanked me for letting them stay at my apartment, which is very much like hers, except my TV is bigger.

“It was nice to get to know you again. I forgot we know so many of the same people. You and your husband are very nice people. If you ever come to Rhode Island, you can stay with us.”

Alzheimer’s is a thief. I know that, but it doesn’t make it any easier. Over the past three days, I was in awe of my father’s patience and kindness. I worry how long he will be able to do this. He is determined to keep my mother at home but I can tell in his heart he knows that might not be possible, so he prays he will outlive her.

In the dark early morning hours, just before the sun rose, saying goodbye was difficult. What will my mother be like the next time I see her? What else will she lose? I have friends whose parents suffer from this horrible disease. I know, eventually, they lose all their words. As a writer, it is impossible to imagine that happening but it very well could.

Over the years, I’ve had some funny instances where I sang a song and got the words wrong. One that stands out in my mind is Huey Lewis and the News singing I Want a New Drug. I thought he was singing about a new truck. My husband would never let that go.

“Why would someone sing a song about wanting a new truck?” Or he would say, “It’s the title of the song, for God’s sake.”

Once In a Lifetime by the Talking Heads also has a lyric that tripped me up. I searched it on the Internet this morning, because I really like my word and couldn’t help asking myself am I right or am I wrong?

The correct lyric is “time isn’t after us” but I thought it was ‘time is an asterisk’. I know, crazy isn’t it? It scares me to think I might be getting The Alzheimer’s, as my father calls it. When he uses that expression, The Alzheimer’s, I can’t help but think of hiding from unwanted house guests knocking at the door.

“God damn it, it’s The Alzheimers, ” I would mutter, then shout, “Go away. We’re not home.”

An asterisk is often used to show the omission of a letter, as in, “the f***ing Alzheimer’s are knocking on the door.” Or it can be used to indicate information a writer leaves out of an article but is providing in a footnote at the bottom of the page, in case the reader would like to learn more.

I am going to continue to sing my lyric every time I play that song, because when it comes to Alzheimer’s time truly is an asterisk, editing the words and the memories, leaving only footnotes for the loved ones who fill in the missing information.

***Originally published on the Huffington post***

If you have a loved one suffering from Alzheimer’s please join the conversation. We’re all in this together.

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12 thoughts on “Time Is An Asterisk-My Mother’s Battle with Alzheimer’s

  1. My dad suffered from mild vascular dementia in his last years. It was so difficult to witness this brilliant man’s confusion. And I agree with just being there to listen. There’s not much point in correcting – his distorted memories was his reality, and it only upset everyone to question his world. The most satisfying response was for me to say, “Tell me more about that,” and let him enjoy the reality he was in.

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  2. It’s true. The world they live in is still their reality and it can be frightening when they realize they are getting something wrong. Reading Elizabeth Is Missing I got such a clear picture of that and realize that somewhere in their fading memories they are like Still Alice, they still are themselves. It’s very sad.

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  3. My mother-in-law has had this illness since 2002 and she is still alive. It a very hard and sad thing to watch. You really do start praying for a release,not only for your loved one but also the caregiver as the toll on them can be just brutal. I wish your family the best.
    I found you through Suzie81blog.

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    • Thank you. Yes, my father has been amazing and still has my Mom at home but I don’t know how much longer he can do this on his Own. We are working on baby steps-getting him in-home help a couple of days a week. Suzie is wonderful, isn’t she?

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      • Yes,getting sustained professional help is key. My father-in-law held out too long and my wife’s mother started getting out and lost as well as injured in falls. Nursing homes are looked on in horror by families but the alternative is a lot worse.
        And yes,Suzie is quite a charming young lady….*s*

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      • Sadly,it took the threat of the state moving in to take care of her before he acknowledged that she needed far better care then he could provide. Granted,he did a good job but he lives in a rural area and her getting hurt/lost was only to increase as time went on. Its not a easy illness to face. How she hangs on after 11 years…I just am amazed.

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  4. A lovely piece about a horrible reality, and the importance of showing up. So many patients are abandoned. Thanks to you for writing from your heart, and to Suzie for reblogging.
    Elouise

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