What we all have within ourselves

We realize that dementia/Alzheimer's symptoms are as varied as the people that have them.  So every response or treatment must also be unique, but the three things that will carry you a long way are; love, patience, and trying to meet them where they are.  The list of what an elderly person requires may seem overwhelming and endless but what they need above all else is what we all have within ourselves.

An irony is that as we feel they are losing their human qualities (the traits that allow them/us to function in society) I would argue that our truest human qualities, the qualities that we all share are being laid bare.  There are many groups raising money for a cure and in labs all over the world their are people seeking cures.  We hope someone finds a cure....but today lets celebrate caregiving and recognize our highest essence.  I am not expecting a cure for the human condition, our essence. When dementia/Alzheimer's is cured, caregiving will continue.  It represents what is best in us.  We are "hard-wired for care" (David Korden).  Focusing on the simplest tasks when everything falls away, we still have the need and desire to connect and care for.

In the big picture; aliments and disease will come and go, but the need for care will always be with us. When  we speak of the transforming power of care, it  not about us becoming something other than who we are, but actually the transformation takes place by us fully recognizing our truest nature. I argue that aspect of ourselves, our humanity, can only be reached with the skeleton key of care taking or empathy or Altruistic acts.

Never ask pointed questions

Grandma constantly worried about all the meetings she was in charge of.  She was always making sure everyone was organized and getting their work done.  I didn't ask her who is coming to the meeting or what it was about, where was it located?  etc.  She was perfectly happy having her very busy productive life without us coming in and letting her know it is all in her mind.  Instead we role-played.  We took on the responsibility of telling her that we would get the others together and everything would be taken care of.  Play along, but do not patronize!  

They will react to sarcasm, rolling of the eyes, laughing etc.  Never make them feel foolish.  I guess it is the basic "do unto others as you would like them to do unto you" philosophy.

One thing we never told grandma is that she has short-term memory loss. What would the point of that be?  Very shortly, within a few minutes, sometimes seconds, she wouldn't remember anyway and it would only have caused her distress, which is a reaction that her body did remember. Remember the mind may lack memory but the body doesn't.  The body stores all the feelings whether they are positive or negative.  It remembers. They react to energy.  They instinctively know whether they are wanted or unwanted.  

My grandfather had died twenty years before yet grandma still talked to him, called for him and talked about him as though he was still alive.  In her mind he was and it comforted her.  Do you know how devastating it would be hearing ten times a day.  "Grandma, Grandpa died a long time ago."  She would  feel enormous sadness and in ten seconds not know why she felt so sad.  She held emotion not memory.  

Be happy for the opportunity to start again and again and again!

Here is a snippet with grandma, a morning in 2006

My sister, Heidi, came over to give us a day of respite.  I was running around the house trying to get everything ready before leaving.  I made grandma's breakfast and went to feed her before we left. Heidi quickly took the food and said she'd do it.  Wonderful...I thought...and proceeded to go in and put on my makeup.  Approximately one minute later in walks my sister.  "Grandma is full, she doesn't want anymore."  I told her to wait a minute and go back into her room and start all over.  Say "Good morning Grandma, I just brought you some breakfast I thought you'd like."  She did, and grandma responded "Oh wonderful, that sounds great."  This went on about five or six more times until grandma had eaten all her breakfast.  She loved and enjoyed each brand new bite!  Heidi thought it was the funniest thing ever.  Stepping back and seeing it play out was like watching a Monty Python movie, but every effective!

Be accommodating.
At the advanced stage, the Alzheimer's/dementia experiencers needs are many, but their wants are few.  Helen got tremendous joy from the simplest of things; the sun on her face, the wind in her hair on a Sunday drive and, of course, loving her little companion Jezzi.  She loved her dog and Jezzi loved grandma.  Providing life's simple pleasures can be so easy for us and so impactful to them. Throughout our lives we often feel ineffective; putting out great effort and affecting little change.   Within your relationship with the Alzheimer's/dementia experiencer there will be moments where you can affect great change with the slightest of efforts.

Remember "I Can't Remember"

Do not expect gratitude for specific actions.

It is not that they do not appreciate what you do for them.  They just can't remember you did it or what was done.  It is very challenging when your many contributions go unnoticed.  In life, we are so conscious of reward and gratitude.  It doesn't mean we are selfish or shallow.  It is just how most of life works.  It is so natural to say, "She won't know anyway."  With the Alzheimer's/dementia experiencer, the majority of what you do will never be recognized, but I believe that energy is not wasted.  The act of doing is transforming.

An excerpt from Remember "I Can't Remember."

Constantly remind yourself that they can't remember.

The seemingly simple task of remembering they can't remember will cause a paradigm shift.  Do not read anything into it.  They really just can't remember.  Take the time to consider what that means.  It means they cannot follow your lengthy explanation of what short-term memory loss is.  It means they have lost their ability to manipulate you.  They cannot be trained or taught to take their medicine or drink their water.  They cannot remember what you said no matter how loudly or slowly you said it.  Their forgetting does not diminish the previous value of any person, relationship, experience or thing.  We do not want to believe that we are so easily forgotten.  We may get resentful and angry.  We have an intense need to be acknowledged and remembered.  Usually we view it as their anger lashing out with a combative spirit, when, at least in part, it may be ours.  They simply can't remember.  How much of the Alzheimer's/dementia struggle is about us?  How much of their struggle comes from our anxiety?  We need to be willing to move toward the unknown.

Accepting this is accepting their loss and our loss.  It represents a shift in the relationship that we may not be ready for.  That acceptance may be heartbreaking, but it is the starting point for care.

Remember "I Can't Remember"

"Everyone struggles to accept and care for a loved one with dementia, but there is no step-by-step guide to the way it will unfold for you.  This book is a must for anyone who knows someone with dementia.  Getting into the right frame of mind, trying to see it through that loved one's eyes is essential.  The author has really nailed this in a concise, easy to understand way.  I recommend it to everyone.  A quick, easy to read book that you will come back to again and again for support and insight.  It will help you remain compassionate and sane."

  Dr. Kim Leatham MD, ABFP

  Virginia Mason

"This booklet is a treasure, reminding us that life is always experienced best through moments of connection.  And especially toward the end of life, there is no need to fix or advise or correct.  Just to be present is the gift."

   Rick Jackson

   Co-founder and Sr. Fellow for Courage and Renewal

"This book proves the notion that, precious things do come in small packages.  It's an honest, wise and inspirational story of the power of love and understanding.  Anyone would benefit from reading it."

   Larry Nakata

   Owner Town and Country/Central Market

Excited to announce our book release celebration at Liberty Bay Books in Poulsbo, Wednesday October 8th at 6:30.  Our new edition is available for $8.95 and will soon be available as an ebook.

Here is an excerpt-

Let go of your name.  you are so much more.

Dealing with memory loss forces us to consider the essence of who we are.  We often find that so much of our value is tied to the past that we are unable to travel into the future without it.  When a loved one begins to forget the names of family and friends, it is a point of crisis.  I have heard so many times, "When my mother/ father/ grandmother/ friend forgot my name, she died to me.  She was no longer that person to me."  Is our being really that tied to our name?  We should consider how much value we place on it.  I think we would argue that our self is more than our name, but when a loved one forgets it, our self is threatened and their self is gone.