Chaplain's Corner

Melony is a health care aid and works in one of the nursing homes in our district.  One day, after helping one of the resident’s who is living with dementia get ready for the day the resident looked at her with grateful eyes and said, “I hope you are always my girl.”  Melony took this to mean that the resident hoped that she would always be there to help her.  Melony wisely responded with a big smile, “I probably won’t always be your girl, but I’m your girl today.”  The resident smiled back, the conversation was over but in that simple transaction two people connected in a meaningful and uplifting way.

Many people, when they hear the word dementia or Alzheimer’s, think that the possibility of human connection and all that entails is over. This can become the sad reality in the late stages of the disease, but it is not true in the stages leading up to that last stage when the person becomes locked out of the world in which they live.  If I may, let me share one of the things that I have learned over the past eight years as I have worked among people who struggles in the various stages of the diseases grouped under the heading of dementia.

Live in the moment, one moment at a time.  As I have provided care to folks suffering with various kinds of dementia, I have learned to live with them moment by moment.  This family of diseases often impairs a person’s ability to remember the past and there may be little capacity to look forward into the future.  Therefore, what you can share is the present, so live in the NOW of the relationship.  Much of the disappointment and stress that family and caregivers experience as they relate to people with dementia is related to the expectation that their loved one can recall the past and have hope for the future.  Sometimes there is, but often for these dear folks, the only reality there is, is the reality of the moment.  If the reality of the moment is 50 years ago, that is the reality of the moment, live in it with your loved one.  If the reality of the moment is some unknown event that may even be imaginary, that is the reality, live in it with your loved one. 

I have talked with others who wanted so badly and tried so hard to pull their loved one suffering with dementia into reality.  This effort generally ends in frustration and sometimes even angry outbreaks.  Why, because the goal is unachievable and when we set goals that are unachievable, frustration and anger are generally the result.  This is especially true for those dear folks who are very sensitive around matters of honesty.  I had one family come to me once very concerned that they not be expected to lie to their loved one with dementia.  Mom, had been diagnosed a couple of years ago.  Her memory slowly faded in relation to the present.  The events of years back seemed to be more vivid than ever, but the events of twenty minutes ago were non existent. 

One day Mom complained, “Joe never comes to see me.  I can not remember the last time Joe visited.”  Now Joe’s sister, Sally, knew that Joe had been in to visit two days earlier.  His name was written in the guest book that Mom insisted everyone sign before they leave.  Sally picked up the guest book and showed Mom the name.  Mom insisted that Joe hadn’t been there.  Sally picked up Mom’s phone and called Joe, “Joe, tell Mom that you were here just two days ago.”  Joe spoke with his Mom and explained that he had been in town on Tuesday and had visited her just before lunch. “No you didn’t” Mom screamed and slammed the phone down.  “Why won’t anyone believe me?  What are you kids trying to do, drive me crazy?” 

Now Sally and Joe were trying to be honest with Mom, they were trying to prove to her that she was not thinking correctly.  But Mom’s mind is no longer capable of grasping and retaining the events of her daily life.  It is not that she is trying to hide something or be deceitful, in her world her son had not visited for a very long time.  It is something like the reality you experience with a two year old.  If Sally would have responded, “Mom, you must really miss Joe.  Let’s call him so that you can talk to him on the phone.”  Sally would have entered Mom’s reality, honored the reality of the disease process and been honest leaving Mom feeling respected.

When my youngest son was little we had a lot of problems with monsters under the bed.  Being a young father and having not dealt with this before, my first approach was to assure my son that there were no monsters, that he was perfectly safe and that he had no need to fear.  Of course, that was ineffective.  In his two year old mind, monsters were very real, they were very scary and he needed some protection.  So I learned to stop trying to convince my son that there are no monsters and sought to find a way to help him feel safe.  So we would pray and ask Jesus to keep the monsters away.  We would keep a night light on because monsters don’t like the light and we would keep the door half way open so that Dad could hear any monsters if they got up the courage to sneak out even with the light on.

Was I lying to my son?  Some would insist that I was, but I don’t believe I was lying.  There was no intention to deceive or misguide.  I was simply entering into his world, his experience, his fears.  I was letting him know that he was important and that his feelings mattered to me.  I was demonstrating to him that I was willing to do what could be done to insure his safety.  It wasn’t long until the monster ritual ended all on its own.  It wasn’t long until the door could be closed and the night light left off and no special prayers were needed for the Lord’s protection against monsters.

So it is with those dear folks who suffer from dementia.  We need to join them in their world because their ability to perceive the world has changed considerably.  Their mind’s ability to take in the sights and sounds and experiences of the day and interpret them in a way we would call normal no longer exists.  So, instead of asking Mom or Dad or Grandpa or Grandma to do something they can not, it falls to those of us who love these folks to accommodate their needs.  They can no longer learn, they can no longer process all the stimuli of life in a manner that results in their ability to react and respond and make judgments that result in their ability to live without considerable accommodation, so we accommodate their needs, we adjust our expectations, and we accept and honor them for the precious, special people they continue to be.

Do you have someone in your life with some kind of dementia who needs you to just begin living in the NOW with them?   It is not easy, but love enables us to do the very difficult because love is about the other, about respect, about honoring who they are right now.  With God’s help you can do it and as you do, you will begin to enjoy this special person again, instead of feeling constantly drained by this person’s needs.