I have a hard time expressing to people why I enjoy working with people with dementia so much (it was even harder when I was in my 20s), but if they haven’t done it, they can’t understand how rewarding it is to learn to see someone’s personality through all the dementia noise.
One of my earliest memories of dementia, if you can say it that way, was when I was maybe 5 years old. (As I was growing up, I spent a lot of time at the local nursing home. Many of my friends were over 60 – these really are my kind of peeps. My grandparents were on the board there and my mom was a nurse there until she switched to hospice nursing.) So, I was at the nursing home one day and one woman was asking for her mother and she asked me to help her. I go up to the nurses station and start asking if they can help us find my friend’s mother. Well, they couldn’t help us. I can’t remember who it was or what explanation they gave me, but I could see they felt really horrible having to explain to me about this woman’s health condition. I also remember there were other times I would sit outside with people waiting for their dad to get them for dinner – my first recollection of Sundowning, along with helping to close the blinds in the day room before dinner.
Many people think it is depressing to work with dementia, and I am hoping to challenge that stigma through my work and let people know that living with dementia, like anything in life, is a journey – an adventure. And much like other things in life, the adventure is richer when we share it with other!
One of my earliest friends, Floyd, would let me hang out in his room and look at (play with) his porcelain cat collection. One day, he gave me two of his porcelain cats from his collection. I was over the moon! These were probably the first two porcelain things I was given, when I think back on it. I remember my mom made me give them back because she thought I had swiped them – to this day, she still gets teary-eyed about Floyd giving me two of his cats. I guess he was pretty ornery with most everyone else.
You don’t know what is around the next corner, you don’t know where it is going or what will happen along the way, what they could say or do next. In a very real way, loved ones and caregivers are along for the ride. And it is the most complex roller-coaster ride you can imagine.
It will certainly not always be pleasant.
But it will not always be unpleasant, either.
There are incredible lows and highs, there is frustration, anger, guilt, deeper love, stronger connections, meaningful experiences, exhaustion, resentment, spiritual revelations, depression, sacrifices to their own health and well-being, and so much more. The experience leaves you forever changed. Once you are a caregiver, you can’t undo that experience or go back to how you were before – not even death removes the depth of the emotions.
But I don’t think it needs to be all sad and loss-related. There are some wonderful experiences you gain by knowing someone with dementia. There are glimpses of genuine self-expression, like if they are excited about their favorite food, they will do a little ice cream dance. These are the little golden nuggets that make me smile at the end of the day, and they help me to know that I am doing my work for the right reasons – because it doesn’t feel like “work” to me.
So, in writing this blog, I am hoping to be able to express different angles of dementia and to highlight some of the, well, highlights.
Just the other day, I was walking with a group in the woods as part of my work with early-onset dementia services. One gentleman was lagging behind, so I was walking with him. And suddenly we saw a deer in the woods, so stopped to watch it. It looked at us and we looked at it for the longest time – as the group got further and further ahead of us. So I waved goodbye to the deer. Well, he thought that was really something! With big smiles, we took turns waving to this deer, who just kept looking at us. What an experience the 3 of us had in those few moments! And that certainly is one of the highlights of my week – I can’t explain why, but it is.