I consider myself fortunate that so far, nobody in family has lived with dementia. Many people working in aging services are there after having personal experience caring for a loved one. Strangely enough, my first experience interacting with someone living with dementia was in college, during an internship in a CCRC my senior year.
I was so ill-prepared! I am certain that the topic of dementia didn't come up in any of my college classes. I look back and cringe at how differently I could have interacted with some of the residents. It may be for this reason that I stayed in aging services and signed on to Person-Centered Care a long time ago.
Fast forward 30+ years, in my mid-fifties, coming face to face with someone I know and worked with (Bill), living with dementia from Parkinson's Disease. After all the years working in aging services, knowing someone personally, and their history, is another level.
Professional to Personal
I lead teams as a nursing home administrator to create the best environment for all of the residents in our care. Upon reflection (which I do all the time), there are things I could have done way better, but I know my heart was always in the right place. I developed some kind of internal defense mechanism to remain professional and avoid getting too emotionally invested. It is the explanation I would give when people asked, "isn't it depressing knowing everyone is going to die."
It sure did become personal when visiting Bill in the Assisted Living Community for the first time in several years. I knew who he was, and my heart broke knowing that he knew what was going on, and what was to be. Intelligent, passionate, generous- this was Bill. I just couldn't believe this was happening to him, of all people!
Knowing Bill's personhood was such a profound lesson for me, and I found a deep desire to help him maintain his personhood as long as possible. I wanted to find ways that we could still connect, and that he would feel that someone who knows him was near and cared.
Touch Communicates What Words Cannot
Bill was having a particularly bad day during a visit. He simply could not connect with anything or anyone in his environment. It was heartbreaking. Even his devoted caregiver, Larry, was out of ideas. So, I pulled out my Compassionate Touch goodie bag, and gave it a shot. Bill's transformation was unbelievable! He settled down, and we connected! We established eye contact and spoke simple words to each other. I knew that he was feeling the presence of someone who cared, and that brought me so much comfort too.
The impact of Compassionate Touch is best seen in action so take a peek at this 30-sec video clip.
I wish I had realized how important connection is for people living with end-stage dementia when I was a nursing home administrator. I think I knew but didn't know how. Compassionate Touch gives you the how.