Zyprexa fails my mother after months of experiencing “normal” on the antipsychotic. Prescribed for her dementia produced delusions and hallucinations she moved through a drug regimen recommended by the best medical minds available to us. Aricept and Namenda were introduced for her cognitive decline, Zyprexa, Risperdal, Abilify and Clozaril for her delusions and many more prescribed for her depression. Now all that remains effective is Ativan for anxiety.

 

On her “lucid” days we discuss her love life. After 46 years of marriage to my father Jack before his death, dementia allows my mother one more love affair with David. David, albeit imaginary, is concocted through her illness, likely an amalgam of male doctors and caregivers who were kind to her.

 

No matter, she’s deeply smitten. On occasion however my father’s afterlife and David’s imagined life collide in my mother’s demented world.

 

“Lisa, help me. I need to see David right away. His father’s buying me an expensive car before the wedding and I’m so nervous. Are you happy for me?” she asks.

 

By this point in her illness I accept my mother’s perspective on life. I no longer question, argue or cajole in response to her remarks. “Of course Mom, I imagine it’ll be a grand wedding. Have you picked out your dress yet?” I ask while preparing the walker if it’s a good day or the wheelchair if it’s not.

 

Around town we drive to my 83-year old mother’s melodic narrative, “Look, Lisa there’s the house David’s parents are buying for us. It’s quite lovely inside,” pointing to a rundown structure at odds with her description. Or, “Can we invite David to the condo for dinner this weekend, I know how much he enjoys the company of both you and Tom. Maybe we should give him a key.” And, “If we drop by the hospital I know we’ll be able to see David. It’d be nice to surprise him, don’t you think?”

 

David is a doctor, I guess.

 

I’m filled with conflict. Her joy about David is palpable and I should be happy for her. But I’m oddly defensive over my long-gone dad and suspicious of this imaginary man courting my mother. Some days I find myself fully absorbed into her dementia filled world.

 

At the condo and throughout our dinner preparations, she tells me all about the elaborate plans for their honeymoon. All the time she’s smiling like a naïve schoolgirl, an unfamiliar look. But we press on setting an extra place for David and delaying dinner for his arrival; when he fails to show I suggest we eat. But my mother’s response levels me, “Lisa, your father’s in trouble. David’s gone to help him and won’t be coming to dinner.”

 

The Dr. David delusion lasts for a year; he’s the most vivid and pervasive of her late stage delusions. Through this delusion my mother imagines my dead father homeless and in need of money, injured and it need of medical care. Finally my father reclaims his role as my mother’s greatest love. His last act leaves David to exist no more.

 

 

These delusions prove far more endearing than the terror filled fantasies that marked her dementia onset. The world has softened since knives, razors and winged monkeys came after her, often landing her in the emergency room with cuts, bruises and scars we couldn’t always explain.

 

For my mother, love indeed conquered fear.

 

When people hear the tale of my dementia caregiving journey they often suggest my mother suffered from Lewy-Body dementia, the same form of dementia that stole Robin Williams’ humor and ultimately his life. My mother however suffered initially from vascular dementia and ultimately passed from the whole-body deterioration that comes with classic Alzheimer’s disease.

 

I’m one of you. I did my best to survive the dementia caregiving journey with my mother. It proved the most challenging experience of my life. What have I learned? Until we remove stigma associated with the dementias and begin to share our stories out loud, the caregiving journey will remain an isolating one.

 

 

Like quicksand

if you struggle alone

you may drown.

Showing 10 comments
  • Connie
    Reply

    Lisa, Again a riveting description of your caregivers journey. I’m sure your experiences throughout the course of your moms illness has given you great angst, but know that you’ve done as well or far better than others in a similar maze of confusion and constant questioning and disbelief. It’s a rocky road to say the least. Wishing you peace.

    • Lisa B Capp
      Reply

      Thanks Connie for being a true supporter of my work. You are one who knows well how hard this journey can be with a loved one.

      • Liliam
        Reply

        This is the pecefrt post for me to find at this time

  • Linda Whittingham
    Reply

    Thanks Lisa for sharing. These experiences you share help me prepare for what might come ahead, although we do not know what we are in for with Maurice yet, he sit still in the MCI phase of short term memory loss …his diagnosis was Nov 2015, and although his short term memory has worsened a bit he is still quite himself and able to do many things yet….

    • Lisa B Capp
      Reply

      Linda, As many of us know, no case is ever like any other. The only thing we can do is share our unique experience in the hope that some morsel of it may apply to others. The broader issue is for all of us to remove stigma from the disease so that individuals may get the right help early and those outside the disease may gain better understanding and compassion to those impacted. Private message if you ever need a shoulder. And thanks for supporting my blog.

    • Jeneva
      Reply

      A prctvoaoive insight! Just what we need!

  • Sue Benoy
    Reply

    Lisa, your blogs are so powerful…. heartbreaking and honest. What a gift you have, to be able to describe your journey with your mom in such a profoundly moving way. I know you are truly making a difference by bravely sharing your experiences with others who are traveling down the same road.

    • Lisa B Capp
      Reply

      Sue, Thank you so much for your feedback and your support, they both mean a great deal to me. Mother’s and daughters, we all understand the special bond and the sometimes overwhelming challenges. My story, like others writing is simply complicated by a despicable disease. We must find a cure and soon. Next week we will be in Washington, DC to paint Capitol Hill purple. It’s critical that we have the support of this administration to continue the fight and the research funding. Wish us luck!

      • Stew
        Reply

        Great arietlc, thank you again for writing.

        • Lisa B Capp
          Reply

          Thanks Stew, I appreciate your support.

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