6 things I have learned about living with Alzheimer’s

This past Sunday was Mother’s Day in the U.S., and the first Mother’s Day in 23 years that I actually celebrated with my own mother.  The ironic thing is, she didn’t even know it.

For the past few years, my mother has been navigating the uncertain, unpredictable world of Alzheimer’s.  It is a journey we, her family, have been taking with her; learning the funny, murky ways that memory works, learning a new language of communication, and most of all, learning how to support her as this disease progresses.

In honor of my wonderful, vibrant, talented mother, I dedicate this blog to 6 things I have learned about people living with Alzheimer’s Disease (AD), an illness that currently affects 8% of all adults over 65.

  1. Memory is not linear; this means that my mother can sit and have a conversation with me about my children, and, at the same time, wonder if she has to go the park to check on her own children (my older siblings by at least a decade).
  2. Do not expect the person with AD to morph into a meek, mild-mannered wallflower who will automatically accept what you say and fulfill your requests because obviously, you know best. My mother spent a lifetime managing all of us; this will not stop because we now question her memory. The learned skill here is persistent patience.  And choosing your battles, surprisingly similar to effective parenting.
  3. People who suffer dementia are incredibly brave. My mother navigates a world in which, in every moment, she does not know where she is, why she is there, or who, if anyone, is coming back to her.  She puts on her game face and charges forward, but I can tell that she is scared most of the time.  That one familiar face in the chaos is her touchstone and she needs that; in this case, this is my father. It is important to honor that familiarity, and not dismiss the necessity of that touchstone’s presence.
  4. You must triage for the Alzheimer’s person! Executive functioning is one of the first building blocks to disappear with the disease.  Simply put, this means that when given four options, a person with AD will not be able to choose. It is impossible to choose. What to wear, where to go to next, what to have for lunch, can all be daunting and impossible events.  Help your AD person. Get rid of extra clothes, food items, social obligations that cloud those choice lists. Make it simple. I’m not saying to remove choice completely, most people need to feel heard, and offering a choice demonstrates that you understand they might not want what you want and that’s legitimate, but slim down the choices.  For example, say “Mom, would you like cereal or toast?” not “What would you like for breakfast?”
  5. Successful Aging is apparently the new phrase among the 60+ crowd in the States, according to my father. I’ve decided to coin the term ‘Successful Dementia’. What does that look like? That’s the thing. It’s going to be different for every person because dementia looks different on each person. I think the trick is for the caregiver and other family members to talk and plan together.  That’s the caveat, to plan.  Because, the painful truth is, it’s not going to get better. Not planning will NOT prevent the future from encroaching.  You need to decide, together, how you want that future to look.
  6. Your relationship must change with the person who has AD. I know that sounds obvious, but my first reaction when my mom lashes out or says something completely unreasonable is to lash back. How dare she speak so abusively to me? I must remind myself that this is an illness, this is not my mother.  I must change the way I communicate with her; just like when my kids were toddlers and they needed to be managed through a myriad of new situations, it is the same.  I need to take care of my mother now as I do my own children.  But this is so painful. So hard.  Sometimes I just want to have a conversation with my mom again.  But me asking her to be her is unfair, and mostly impossible, and, in the end, just mean.  Every once in a while, there will be a sudden glimmer and I think, ‘oh there she is!  I’m talking to my mom again.’ So I enjoy those moments but I don’t build my interactions with her around them.

In Israel alone, there are ~150,000  people living with the disease and the rates have almost doubled in the past fifteen years.  Hopefully, our innovative start-up nation will come up with a cure soon, but until it does, we need to be prepared, have a thought process, and help each other navigate this new world of dementia with our loved ones.

Are you caring for someone with AD? Do you have personal experiences with some of what I mentioned or do you have other ideas to add? Please share. I’d love to hear your stories.

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