Dementia. A chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning. Such a clinical and concise definition for a condition that wreaks such emotional, mental and physical havoc. I hate the disease. I hate what it does to those living with it and their families. It’s a vicious, unrelenting condition that robs people of their very essence.
For years, I worked in facilities where the heart breaking reality for my residents living with this disease was that they either outlived or were essentially abandoned by their families. It was in this environment that I realized that I love and admire those living with dementia more than I hate the disease itself.
It’s their courage. It never failed to amaze me, especially in the early stages, when they are aware that they are foggy. They are aware that they are losing pieces of themselves. Can you imagine the sheer bravery it takes just to live with that knowledge? Just to get up and face the day? I knew then that I wanted to do everything within my power to make their lives as full and meaningful as possible.
My daddy used to beat my momma. I just can’t handle it. I’m too busy. He never bothered with us when he was well…I’ve heard countless reasons as to why these folks have ended up in a facility over the years. I am not discounting or judging the difficulties for the families. Sometimes a facility is the best solution. Sometimes it’s the only solution. As a caregiver, it’s very clear cut for me. ANYONE who lives with such a condition, regardless of their history or past mistakes, deserves the utmost respect and best possible quality of care. End of story. We do not pick our residents.
Now I’m in a new environment. I have one client with a family who is very involved. Very invested. It really is an amazing dynamic. After so many years in a facility, I forget at times that the family may not know my reasonings for certain actions. My client was having a tough day. She was in her wheelchair but was rummaging and reaching for everything she saw on the floor. As a caregiver, I knew it was going to be a day that required extra close supervision. I quickly assessed potential fall risks, higher difficulty in transfers, and came up with a mental list of therapeutic redirection ideas that I could employ. All of these tools are second nature to me, almost muscle memory, so I didn’t articulate it. When a family member asked why I was staying so close by her, I told him that I didn’t want her to fall and left it at that. Later, when I was discussing her day and her mobility in more detail, I saw the light of understanding in his eyes. He then understood the potential for a head injury if she tumbled out of her chair while reaching for something on the floor. That those incidents can happen quickly if I’m not on top of it. I took for granted that “I didn’t want her to fall” was enough of an explanation simply because I was used to working in a facility where such knowledge is commonplace. These are the sort of teachable moments that I am finding incredibly valuable! In the process of explaining such situations to the family, I am reviewing the knowledge for myself. Almost like a refresher course. Muscle memory is nice, but the ability to articulate, employ and address such challenges with conscious awareness is much more valuable.
Dementia is a family illness. There are good days and bad, but much like addiction, it affects the family unit as a whole. I stress the need for self care. I love this family’s enthusiasm and willingness. I love their honest desire to learn all they can about the nature of this illness. I love my client.
Caregiving to me is more of an art than a science, especially when it involves dementia. With love, communication, consistency and support, we can make massive strides towards improving the quality of life for those in our care. The first step is seeing the person instead of the illness with which they live. The family unit is the biggest key to this. I value their input and opinions every bit as much as they value mine. There is gold in their memories; information that I can use when redirecting. They know her fears, taste in music, favorite foods, potential triggers. I feel part of a team effort whose sole intention is to provide the best quality of life for someone we all care about. We are united in that common goal.
There are 7.7 million new cases of dementia every year. I am very blessed to be in the position to see how good intentions and proactive decisions from a core group of caring family members can positively impact the life of one. To be a part of such an experience is deeply enriching.