Thursday, 13 November 2014

Carepartner Wednesdays--When kindness isn't enough.

                                                                   
                                         Alzheimer Request

Don't ask me to remember,
Don't try to make me understand.
Let me rest and know you're with me,
Kiss my cheek and hold my hand.

I'm confused beyond your concept,
I'm sad and sick and lost.
All I know is that I need you,
To be with me at all cost.

Do not lose your patience with me,
Do not scold or curse of cry.
I can't help the way I'm acting,
I can't be different though I try.

Just remember that I need you,
That the best of me is gone.
Please don't fail to stand beside me,
Love me til my life is gone.

Found taped to an Alzheimer patient's door in a hospital ward. 1

I can imagine the pain that led to the writing of this and taping it on the door. It was probably done by a family member who's heart was breaking as they saw the person they loved become someone they didn't know. Perhaps in the course of the disease, they had the reactions they described. Maybe they scolded or cursed, and quite likely, they cried. Or perhaps they saw a caregiver give treatment that was less than compassionate and their reaction was to pen these words and put them on the door.

My mother had Alzheimer's. I have worked for almost 16 years among that population and also worked with and supported their families. I get it.

But there's parts of that poem that set my teeth on edge.

The poem is written with the kindest of intentions. But there are times when kindness isn't enough. We need to go so much further.

The words "let me rest" are appropriate at times, as they are for all of us. When someone with dementia gets tired, they are less able to cope with the challenges in their lives. They can become more (weepy, angry, depressed, anxious--you name it.) At those times, yes, "let me rest." However, there are other times. 

I enjoy so many activities. Read the newspaper with me (did you know I still have opinions? Lots of them? That I'm interested in life beyond these walls?) Exercise with me. (It's been important to me all my life, and if you make it fun, we can have a great time.) Sing with me. It never fails to bring a smile to my face. Take me outside. I love to fill my lungs with fresh air. Tell me about your life. I am interested!

A few weeks ago, we had a gala at Christie Gardens, and one of the nurses looked lovely in a long, flowing gown with spaghetti straps. She came early so that she could share with the residents, and they enjoyed every moment of it. They exclaimed over her high heels, gave her advice and oohed and ahhed. I've found most women of any age or cognitive ability love clothes.

Then there's children. And pets. The list goes on.

"I'm sad and sick and lost." 
There are times when I am sad. Sometimes the confusion I feel, which leads to frustration and even anger, can depress me and make me sad. Sometimes I am sick. There are times I can't find my way back to my room or to the dining room and I get lost. BUT DON'T LOOK AT ME AS SAD AND SICK AND LOST.! Don't brand me like that, or you will never look beyond to the person who is still inside.

"Just remember that I need you, that the best of me is gone."
NOOOOOOO! I do need you, but what I need from you is this:

Dr. Richard Thomas, founder of the Eden Alternative, and Dr. Allan Power, author of Dementia Beyond Drugs, have an illustration that is powerful.

Think of me as boarding a train. You are standing on the platform, waving to me. As the train pulls out, I appear to get smaller, and finally disappear. You know what? I didn't disappear. I am fully on that train. From my perspective, YOU disappeared. So what do we do? What can you do? 

You look for new ways to communicate with me, because the old ones don't work any more. You get creative, and don't get discouraged. You KNOW I am in there (or on that train) and you look for ways to connect with me. 

I know connecting isn't easy sometimes, and what works today may not work tomorrow. But when we do connect, we will smile and laugh and hold hands.

And my train will return.




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