Greatness begins with awareness.

Two long goodbyes

I lost both of my parents to dementia.  How they handled the challenge was as different as they were.  Dad never acknowledged anything was wrong and always fought any suggestion of it.  Mom was graceful about her memory challenges, always willing to acknowledge it.  I remember being so impressed with her grace when I had some friends over to meet her.  At the beginning of the visit she told the group to please excuse her if she repeated herself, as she had memory issues.  She put everyone at ease.

Over the years she would often say, “I am not the only one with a memory issue around here, but I am the only one willing to admit it.” Living out of town, I didn’t realize my father was on the same path from my limited interactions on the phone or during my brief visits.  When Mom hit a crisis, I understood.

Mom ended up in the hospital one day after being so confused, she was unable to get home.  She had managed her type 2 diabetes beautifully for two decades and now was unable to remember to take her meds or watch her diet.  When I visited her, I was amazed at her quiet, accepting manner.  She was reading the paper in her room and seemed unconcerned about her health.  She appeared to be enjoying the quiet of the hospital room like she was at a resort, knowing that things were being taken care of for her.

That was when I realized Dad’s memory was an issue as well.  Friends were calling to ask about Mom’s situation; Dad was unable to explain that they had found stage one lung cancer and Mom would be having surgery.  Dad simply said, “Jean is going to be fine, just a bump in the road.”  At first, I thought he was either being a good sport, or in denial.  However, it became clear that he was unable to remember what had been explained to him.  I knew from reading about dementia that not being able to take in new information was one of the challenges of the disease.  I understood then what Mom had known; Dad’s memory was in significant decline.

My mother asked others for help, recognizing she couldn’t manage many tasks. Dad never connected those dots.  We quietly took away his financial responsibilities.  The biggest challenge was the car.  I had many doctors tell him to stop driving and he would tell them to mind their own business!  Finally, I had his doctor complete paperwork so the state would suspend his driver’s license.  Dad called me to report that he had received a letter announcing the state suspension and he intended to fight it.  I listened respectfully, knowing he was incapable of fighting the system, feeling a bit sad that I masterminded the suspension behind his back.

Mom didn’t know us for the last three years of her life, which for those who have lived this horror know, breaks your heart over and over.

When Mom finally passed away in June of 2010, we moved Dad to an assisted living apartment.  We hired a wonderful service to move Dad, who recreated his bedroom and den, down to exactly what was on the walls and tabletops, so it would feel just like his home and it did.

Dad only lasted 18 months after Mom was gone.  He missed my mother terribly and the chronic leukemia he had had for decades, accelerated and took him.  I was sad to lose him, yet so relieved to not have to relive the experience of not being recognized by my parent.

I was honored I could help my parents manage their lives when they lost their ability to take care of themselves.  I was comforted by doing simple things for them like talking to their doctors, going to the grocery store or sitting quietly reading, while they slept.  I try to remember the times when they were well, although honestly, most often I think of those last years when their worlds were small and they were just thrilled I had called or came to visit.

A longer version of this article was submitted to Chicken Soup for Dementia, October 2013.

13 Comments

  1. Laurie Lokar

    This is beautifully written Sue. Thanks for sharing .

    Reply
    • Susan

      Thanks, Laurie. I know you can imagine all those interactions with my parents, knowing them in their good days!

      Reply
  2. Ken Kesslin

    What a beautiful and simple tribute to the final years of your parents’ live. Thank you for sharing this, Susan!

    Reply
    • Susan

      Hey Ken, so good to hear from you and your kind words!

      Reply
  3. Tim Kathrens

    Wow Susan, a wonderful piece of writing.

    Reply
    • Susan

      Thanks for the comment, Tim. Appreciate you taking the time.

      Reply
  4. Pamela Cohen

    Susan
    You are a wonderful daughter and your parents were lucky to have such a caring person in their lives.

    Reply
    • Susan

      Thanks, Pamela. I always felt lucky to have them as my parents, well most of the time!

      Reply
  5. Jean Tobias

    Beautifully written, Susan. I can’t imagine the pain of not being recognized by your mom. So glad neither of my parents had this awful disease. This brings tears as I think of your family and all that you endured. Blessings and love to you!

    Reply
    • Susan

      Thank you for your kind words, Jean!

      Reply
  6. Debra Cole Hicks

    Susan how beautifully written. We went through something similar with our parents. Dementia is such a cruel disease. Thank you for sharing. I only really remember your mother. She was a wonderful person. Thank you!!

    Reply
    • Susan

      Debbie, thank you for your thoughtful note. It is a tough journey. Sorry you had it also.
      Fondly,
      Susan

      Reply
  7. Patti

    Susan,

    So beautifully written. We will be attending funeral services this week for an aunt who suffered with Alzheimer’s. Her assisted living facility was near our home, so we were able to visit her while she had some glimmers of her former personality. Toward the end she no longer recognized anyone, and her personality changed. I gave another aunt with Alzheimer’s in an out-of-town facility, talks with my cousin’s indicate how painful is was/is to watch a parent who had been active and vibrant, no longer recognize them, or turn on them.

    Like you, my cousins care(d) for their parent in a loving and compassionate way, moving through the frustration or hurt. As my one cousin said, “She’s taken care of me so often, it’s my turn to care for her.”

    To those with Alzheimer’s, and those who love then, care for them, support them, prayers.

    Reply

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