Celebrating Our First Christmas with Alzheimer’s Disease: Laughter Allowed

IT MAKES SENSE TO ME

by Larry Peterson

I guess the first time I realized that something was really wrong was about a year and a half ago. I have a bedroom I turned into an office, and I was sitting at the keyboard clicking away. I sensed someone behind me and turned to see my wife, Marty, standing there. She had a strange look on her face. I remember the moment because fear was etched across her face. “Hey,” I said. “What’s the matter?”

Then I noticed she was trembling. I stood up and went over to her and put my hands on her shoulders. She stammered and sort of whispered, “I don’t know. I think I need your help.”

“Okay, what is it?”

Marty turned and headed down the hall past the living room and into the kitchen. I followed and noticed that she had her “cookie” stuff out.  As she had done so many times in the past, she was about to make the best old fashioned, home-made, chocolate-chip cookies I have ever had. Like a child, I said, “Oh, awesome, you’re making cookies. So, how can I help?”

She sighed and shook her head.  She began to cry and, looking at me, said, ” What is all this? I don’t know what it is for?”

The woman who had made thousands upon thousands of these cookies over the years had no memory of previously doing what she had done so many times before. She had placed the needed supplies on the counter and went to use the bathroom. When she returned a few minutes later, what had been virtually second nature to her had been erased from her mind. It was all gone.

She had come back to me for help because she KNEW something was terribly wrong inside her head, and this time the sudden, specific memory loss was scaring the hell out of her. She sobbed, “What is happening to me?”

She had been sick with Lymphoma since 2011. She had endured numerous cycles of chemotherapy to fight the disease. Anesthesia, required because of surgery in August (needed to repair a broken ankle), and an attack of A-Fib (Atrial Fibrillation) in September exacerbated the cognitive dysfunction. She was officially diagnosed as having Alzheimer’s Disease* on September 28.  And now we are approaching our first Christmas together with Alzheimer’s as our unwanted Christmas guest.

Guess what? It is OK. He will not ruin our Christmas. He is welcome to join us. That is because we have started to laugh again, more and more. And we are laughing at the insanity of living in Alzheimerville. And trust me, it can get quite wacky.

I have always had a bit of a flip attitude. It probably has helped me get through some tough times. So when Marty goes to the cardiologist and goes to sign in and cannot remember her name she looks at me for help. I smile and say, “Who cares Lucy, they know who you are. Just put down Lucille Ball.” She starts to laugh and I laugh and I write her name down for her. Not an issue.

The past ten years of her life seem to have literally vanished from her brain. She does not remember us getting married. (We were both widowed and married eight years ago. She has no clue.) So she asks me if we are really married. I show her our marriage license and pictures from our wedding. She is shocked. “I can’t believe it, ” she says. We really ARE married.”

Now, every night I say to her, “Okay, we can sleep together tonight. It’s not a sin.” She always laughs at that.

There are so many little, extraordinary things that happen every day. Being asked the same question over and over can become unnerving. I have turned it around to where I start by giving her the answer. For example, she asks me ten times a day, “How do you feel today?” After a few times I answer, “Today I feel like seeing you and that makes my day shiny.” It is a ridiculous answer but she likes it and I like it too.

I cannot count the things that have been moved to the strangest places. I have found the Parmesan cheese in the towel closet, unwashed clothes in the dryer. She makes coffee and tells me it is the worst coffee she ever had and I should let her make it. She has hair curlers that keep vanishing. I have found them in the garage, in the refrigerator, and under the kitchen sink. We had been searching for them and when I found them in the refrigerator I said loudly, “Here they are.”

She was standing nearby and turned to see me lifting the bag from next to the milk. I quickly asked, “Can I use these for curly fries?” I began to laugh and she shook her head and smiled. I gave her a hug, opened the freezer door and tossed the curlers in. “They are not frozen enough,” I said.  She began to laugh and so did I and, although shrouded in a dark moment, we laughed our way into the brightness of a new moment.

Marty has been captured and imprisoned by the most insidious of diseases. It is like a computer virus slowly deleting what is in memory. So far the last ten years are gone. That cursor is still clicking delete, delete, delete. The day will come when she will not even know who I am. I will do my best to keep her laughing and smiling as long as I can, and as long as she understands why we laugh.

As for me, I must admit, this entire situation has been wearing me down. There is a lot to do as a caregiver. I traveled a similar road with my first wife, Loretta, who died 12 years ago from cancer. She was sick a long time, but she never lost brain function. That is a very difficult thing to deal with 24/7. But you do what you have to do. If a man and a woman love each other that is the way it should be, HAPPY to be there for each other, no matter what. We both took vows before God and man to that effect and, for me, they remain in full force until death.

Our biggest friend in all of this is our Catholic faith. It is there for us through the Holy Mass, through Our Lord Jesus, through Our Blessed Mother and through the examples and intercessions of so many great saints, reinforced every day by prayers from our family and friends. In fact, I did attend Mass this morning and I had a bit of an epiphany. I was feeling a bit sorry for myself when I realized I had been given a Christmas gift from God Himself.

This gift is my ill wife afflicted with a disease that is unstoppable and incurable. She is foremost God’s child, and now she needs someone to take care of her just as she did years ago when she was a child. We met at church and were married in church. An unlikely couple, I know that God brought us together. Maybe this is why. Because during the Christmas season of 2014 I realized that besides a wife, HE has given me one of HIS children to care for. I will do my best to make Him proud. I will also do my best to keep us laughing. It is all GOOD.

MERRY CHRISTMAS
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* In case you do not know this, Alzheimer’s Disease and dementia are NOT the same thing. Alzheimer’s is the number one cause of dementia but there are over 150 different causes.

 

Copyright Larry Peterson 2014

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5 Responses to Celebrating Our First Christmas with Alzheimer’s Disease: Laughter Allowed

  1. wonderful writing and sentiments. May God bless you both with even more compassion and humour than you have already

  2. Prayers go out to you and your wife. Merry Christmas!

  3. Don Mulcare says:

    Hi Larry,

    Be sure to take care of Larry. You need respite, even an hour a day.

    There was a news feature that described a singing program for Alzheimer’s patients. The part of the brain that remembers songs and melodies holds out for a long time. Get out the record player and use it as much as possible.

    One of my volunteer outlets is a nursing home, where I’ve seen Alzheimer’s at work over the last years of a patient’s life. Be sure to maximize the present opportunities, since the later stages will continue to chip away until little is left.

    You have the opportunity to demonstrate the most important criterion by which Christians may be identified, “See how they love one another.”

    You are not alone. Although the miles separate us, be sure that you and Marty are on the prayer-Mass-communion list, from now on.

    God Bless,

    Don

    • Thanks Don,
      Interesting about the music. Marty has always played piano and is still doing so. Sometimes I think better than ever. So, I recorded her playing (did not tell her) and, if she ever begins to lose that ability, I will be able to play her own piano playing for her.
      Thanks for the prayers. Mass & Communion are POWERFUL.
      God bless,
      Larry

  4. Charlotte says:

    Dear friends
    I have already responded to Larry on the Zenit website where I read his loving article.

    But to all of you out there who are affected by Alzheimers, there is an extraordinary website available to help us care for our loved ones:
    alzheimersreadingroom.com
    It is set up by Bob DeMarco who cared for his mother Dotty for 8 1/2 years. He shares a wealth of wisdom and actual “how to” solutions to the endless frustrations of caring for our deeply forgetful loved ones.

    Do give it a read – you won’t regret it; it’s a life saver.
    And if you can, please pass the word around – it’s so difficult to know about it.
    God Bless you all in this New Year.
    Charlotte