OPINION

Guest opinion: It's up to us to adapt to those living with 'brain change'

Ann Berlam
Special to the Naples Daily News
Ann Berlam and her husband Bob.

Many of us know or are related lo loved ones living with brain change.  Our loved ones are the same individual they always were.  What all of us need to know is that we must adapt how we live, communicate, and share with those who are living with brain change.  There is nothing to be ashamed of, there is nothing to fear and there certainly should be no stigma attached to our loved ones.  They are precious to us and enrich our lives.

June is National Alzheimer’s and Brain Awareness Month.  This past June there were just a few articles in the media about recognizing and celebrating Alzheimer’s that affects 6.5 million individuals in the U.S.  Alzheimer’s is a medical condition for which, sadly, there is no cure at the present time.  There are clinical trials occurring and there are medicines prescribed to slow the progression of this disease.  But that is all there is at this moment.  It is a disease that needs to be treated and recognized for what it is, a change in how the brain functions.  Recognizing and accepting the realities of this disease will help one to understand and appreciate what those living with brain change experience and the vital role their care givers play in making their lives as meaningful as they always have been.

The Alzheimer’s Support Network of Collier County provides services and support to families in Collier County coping with Alzheimer’s disease.  One of their services is called Kindred Spirits.  It brings together those living with brain change and their loving care givers a couple of hours a week to meet, discuss what’s happening in their lives and get the support from others who are experiencing similar activities in daily life.  It is an opportunity to be together, laugh together, hug, and sometimes even shed a tear.

More:Guest opinion: I am more than Alzheimer's

Recently the care givers in the Kindred Spirits group were asked to think about what they would like others to know about their loved one living with brain change.  Mainly we want others to know that our loved one is the same person he has always been but that his brain functions differently now.  A fellow care giver shared that he attended church recently with his wife who is living with brain change.  After the service everyone was greeting one another and having conversations.  He related that friends greeted his wife then focused their conversation with him leaving his charming wife out of the conversation.  So please, don’t be uncomfortable, don’t hesitate to engage someone living with brain change in a conversation (it might be interesting), offer to take a walk with them, go out for a nice lunch, or even watch a movie together.  Remember we all want to be treated with kindness, respect, and love.

Alzheimer’s affects 6.5 million individuals in the U.S.  Alzheimer’s is a medical condition for which there is no cure.

Maybe the tips below about what we want you to know about our loved ones living with brain change might help you start some of those conversations or activities.  You never know until you try.  Remember to love, laugh, and live well.

Bob Berlam.

WHAT I WANT YOU TO KNOW ABOUT MY LOVED ONE

  • My loved one is living with brain change, a very kind term recommended by the Alzheimer’s Support Network of Collier County.  It is a more gentle term than cognitive impairment, memory loss, dementia, or Alzheimer’s.  He is the same loving, kind person he has always been, but he experiences the world now in a different manner than you and I.
  • My loved one enjoys the company of others and conversations with them.  Be patient when he is trying to express his thoughts and when he responds to a comment you make that may or may not relate to the discussion, just listen to him, and then continue with your thoughts.  It’s helpful to stand close, speak clearly, and make eye contact.
  • My loved one may struggle to find a word.  Help him if he wants you to help, he will be grateful.
  • My loved one has difficulty making decisions.  If you offer him choices to make, such as what to eat or where to go, limit the choices you offer him to no more than two.  It makes it easier for him to decide and sometimes you may need to make the decision for him.  It works to say I like this “decision” over the other one and let’s, you and I, go with it.
  • My loved one takes longer to do various tasks.  Be patient with him and provide ample time for an action or activity to be completed.  Distractions can slow him down.  One project or activity at a time, multi-tasking is difficult for him.
  • My loved one is often overwhelmed with technology: iPhone, iPad, computer, TV remote.  A phone call is usually the quickest way to contact him.
  • My loved one enjoys exercise, so take a walk with him, ride a bicycle, or go to a park.  Socialization, exercise, communication, and a good diet are keys to a healthy life for all of us.
  • My loved one likes to feel part of what is going on, make sure to include him in conversations, activities, and fun things.
  • Accept my loved one for who he always was and with who he is now living with brain change.  He is a wonderful human being who wants your love and support.  Meet my loved one in his own uniqueness.
  • Along with me, let’s exhibit patience, humility, and forgiveness.

Some helpful hints to consider. 

Ten Absolutes by Jo Huey to Simplify Daily Tasks and Create Positive Interactions:

  • Never Argue | Instead Agree
  • Never Reason | Instead Divert
  • Never Shame | Instead Distract
  • Never Lecture  | Instead Reassure
  • Never Say “Remember | Instead Reminisce
  • Never Say “I Told You So” | Instead Repeat/Regroup
  • Never Say “You Can’t” | Instead Do What They Can
  • Never Command/Demand | Instead Ask/Model
  • Never Condescend | Instead Encourage/Praise
  • Never Force | Instead Reinforce

Just as it takes a village to raise one child it takes a village to support our loved one who is living with brain change. 

Ann Berlam, 74 has lived in Naples with her husband,  Bob, since 2000.  Ann and Bob were very involved in volunteer activities in the Naples community, serving on various nonprofit boards including leadership positions.  They both had professional experiences in the education field and in government at the state and national levels.