Tuesday, May 29, 2012

5 Steps to Compassionate Caregiving

By ReturnToJoy Friday, May 15, 2009

Communicating with the Dementia or Alzheimer’s Afflicted
By Charlotte Parker

We are all born with a desire to give and receive love. Circumstances we encounter throughout our lives may callous that need, but it never fully dissipates. Sadly, as we grow older, we oftentimes become more challenging to love, and illnesses such as dementia or Alzheimer’s may even prevent us from appreciating the joy of giving love. At our moments of being the most seemingly unlovable is when we need to be loved the most.

Dementia and Alzheimer’s require caregivers to reach deep into their compassion reservoirs to find the patience and kindness all humans desire and deserve. My mother, Kathryn Parker, has been affected by frontal lobe dementia for the past two decades. Her doctors never expected her to see her 75th birthday, and we just celebrated her 90th. Although she has been bedridden for the past several years, is paralyzed on the left side of her body and is incapable of expressing herself through language, she continues to thrive. This journey into the depths of dementia has been a unique gift for me. My life circumstances have provided an opportunity for me to dig deep into my being and realize my capacity for compassion.

The most essential component to compassionate caregiving is having the willingness to release the attachment we all hold to our individual perceptions of reality and choose to quite literally step into the demented person’s reality. I found the following steps to be very helpful in the process of understanding and embracing my mother’s perception of reality.

Compassionate Caregiving

1.    Careful Observation. Like babies, people afflicted with dementia or Alzheimer’s will provide subtle cues or signals indicating their level of comfort or distress. By paying careful attention to their cues, we are able to compassionately respond to their needs. They may walk away for “no apparent reason,” turn their head away from you, or indicate they are not understanding by simply discussing something else or by demonstrating obstinate behavior.

2.    Acknowledge and Adjust. Again like babies, the person with dementia has needs and desires he or she would like to have met. By acknowledging the cues and signals being providing and adjusting your behavior accordingly, you demonstrate respect and courtesy while creating a space that feels safe for the person.

3.    Constant Communication.
Individuals with dementia often panic and become distressed because they are not able to remember from one moment to the next where they are and what is happening to them. When providing a service for the individual, constantly communicate the process of what is happening and what will happen next. Let the person know step by tiny step every detail of what you are doing. For example:

Kathryn I am going to wash your hair. Now we are going to rinse your hair. Doesn’t the water feel nice on your head? We are rinsing your hair. Feel the water. Doesn’t that feel nice? Next I am going to put shampoo in your hair. Can you smell that shampoo? Doesn’t it smell nice? I am rubbing the shampoo in your hair, etc.

Carol Bradley Bursack, Health Guide
5/15/09 5:10pm

This is wonderful, Charlotte. I've written often about what you say here:

 

"Acceptance. Perhaps the hardest step in the process of compassionate communication is acceptance-accepting whatever the demented individual says or does is appropriate for the reality in which she lives."

 

My dad didn't have Alzheimer's, but his brain was destroyed by surgery meant to correct a WWII brain injury. I had to learn to get into his head and figure out what he believed to be true, and then, to the best of my ability, make it true. I was taken to task at the time because psychiatrists insisted we bring them back to "reality." It was obvious to me that the only way he could find contentment was for me to make his reality "real."

 

Fortunately, professional thinking changed during the ten years dad lived in his demented hell. It finally got so I no longer had to fight to do what a daughter's heart knew was right for her dad. You, too, instinctively know what your mother needs.

 

Thank you for this valuable contribution to the Ouralzheimer's site.

 

Carol

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By ReturnToJoy— Last Modified: 12/19/10, First Published: 05/15/09