Alzheimer's disease, AlheimersNo, I haven’t experienced Alzheimer’s as a family member. Yet I have had the privilege to work with these special people and in turn assist their family members as they deal with the heartbreak of Alzheimer’s.

Heartbreaking doesn’t begin to describe the roller coaster experience for many families. They lose the person twice – once mentally and once physically. There is an epic sadness. You hear it in the words of the family members:

  • Why doesn’t Grandma remember me?
  • Why can’t Mom remember I was just here?
  • Dad keeps asking the same thing over and over. It is driving me crazy.
  • My spouse doesn’t speak to me any more. Does he even know I’m here?
  • Why the *#^% is this happening to them, to our family?

These are some of the statements I have heard from family members over the years. There is an expression of loss, of hurt, of the aching for who the person used to be.

What can we do?

Currently there is no cure for Alzheimer’s neither can it be prevented. Research is underway to end Alzheimer’s. The Alzheimer’s Association is calling us the public to action with this short video:YouTube Preview Image

End AlzheimersTake one or more of the following actions:

  • Wear purple on September 21, 2012.
  • If you are financially able, contribute to the Alzheimer’s Association or other groups working to end Alzheimer’s.
  • Add an #endAlz button to your Facebook and/or Twitter profile photo for the month of September.
  • Support the families dealing with the effects of this disease.
  • Offer support to caregivers (especially family members providing care in the home). Visit them. Fill in for them for an hour so they can take a break.
  • Continue to engage those dealing with this disease in living life as they are able.

Together we can end the heartbreak of Alzheimer’s. Share in the comments the action(s) taken!

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10 thoughts on “The Heartbreak of Alzheimer’s

  • 12 September, 2012 at 11:46 am
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    So tragically true that a person with Alzheimer’s is lost twice. I can’t imagine the stab in the heart when your beloved family member or friend doesn’t recognize you :(.

    This is somewhat off-topic, but are you aware of any foods that help mitigate the damage or the onset?

    Thank you :).

    P.S. Marked my calender in purple pen for 9/21.
    Linda Esposito recently posted..Are You Addicted to Anxiety?My Profile

    • 12 September, 2012 at 12:16 pm
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      To my knowledge there is no conclusive research, Linda. Healthy diets rich in antioxidants are generally recommended. Seems like there is some research involving coffee but I don’t think it was a very large study.

      Thanks for making plans to join the purple ranks on September 21st.

  • 14 September, 2012 at 8:36 am
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    Alzheimer’s Disease is heartbreaking for sure, and it’s so difficult for family members. My focus professionally and personally has always been to support the people who already have Alzheimer’s and their families, to find moments of joy and connection despite the shadows of the illness. I certainly support everyone who is working for a cure, too!
    Rachelle Norman recently posted..Song Spotlight: “Solamente Una Vez”My Profile

    • 14 September, 2012 at 8:55 am
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      Rachelle – It is so important for us to support those with Alzheimer’s and their families. There are moments of connection. Often it takes a little time & patience, but connections can be made. Thank you for your work as others continue to search for a cure.

  • 14 September, 2012 at 3:05 pm
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    JoAnn,

    I lost my grandmother to dementia (never definitively diagnosed as Alzheimer’s), and that “double death” is a great description. You grieve long before they actually die. And you caught several of the feelings right on. I appreciate your practical action suggestions, and I just set myself a purple reminder.

    Warmly,
    Ann
    Ann Becker-Schutte recently posted..Maybe Understanding “Why” Isn’t the Goal: Coping with LossMy Profile

    • 14 September, 2012 at 3:35 pm
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      One of the challenges with dementia is determining the type. Alzheimer’s or not, it is still devastating. Thank you for joining the purple brigade.

  • 15 September, 2012 at 3:18 am
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    Hi JoAnn – Ugh. dementia. ugh. alzheimers. ugh. For me, it’s like a continuous loss….Every time my mother behaves in that irrational way, says things that are not repeatable, is unable to find home…. it’s constant. Ugh. Thanks for letting me know that 9/21 is alz day, I will wear purple and blog.
    Kathy Morelli, LPC (@KathyAMorelli) recently posted..Life is not black or white, it’s the full spectrum of color in betweenMy Profile

    • 15 September, 2012 at 7:12 am
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      What you have shared of your journey with your mom on the dementia road has been powerful, Kathy. I hope the two of your are still finding those moments of connection.

      As for 9/21, I know you will rock out the purple.

  • 16 September, 2012 at 8:13 pm
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    Dear JoAnn,
    Thanks for sharing this. I know I felt that I lost my mother in little pieces over a course of many years. There was some comfort in sharing music and poetry that she knew well. Being able to connect even a little was very sweet. Thanks for reminding us about EndAlz.
    Carolyn
    Carolyn Stone recently posted..Strength in CommunityMy Profile

    • 17 September, 2012 at 8:13 am
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      There is great comfort in those small connecting points, Carolyn. It helps us see the person rather than the diagnosis.

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