by Linda Burns~I would like to share my personal story of my Mom’s diagnosis with Dementia.
When my son was first diagnosed, in the beginning stages of his various therapeutic interventions for autism and trying to function in this daily game called life, I oftentimes felt all alone on the journey. I now find myself feeling all alone on this current journey of helping to care for my mom who has been diagnosed with dementia. I do not mean that I am doing this solo – my siblings are very much involved and my dad is my mom’s primary caregiver – but the frustration makes you feel that you are going it alone…
Although her diagnosis came three years ago this past November, every day seems like “a first” as new symptoms are constantly – and very rapidly, I might add – manifesting themselves. Although my sister and one brother, who live locally, along with myself are “in this fight” together, we each play very distinct roles. And then there’s my dad, who has many and varying roles and, of course, whom I’m worried about more every day.
The thing about dementia is just this, I find that the more the person becomes reclusive and withdrawn, the more energy and resources and bodies you need. Listening to my dad talk about what one night may entail makes me weary. I know how much “work” it is to try to “bring someone out.” I’ve worked at it for the past 20 years, more or less, ever since my son was diagnosed with autism. The constant effort to engage and monitor and supervise and stimulate and – don’t let me forget mind-read — is emotionally and mentally exhausting.
And then there’s the double-edged sword when your loved one has not completely become despondent, just as having a high-functioning child with autism, at times, is a double-edged sword. And the guilt enters in when you become saddened that your loved one is aware enough to know…as silly as that sounds…because you genuinely don’t want the alternative, yet in order to spare your loved one the hurt and frustration and depression, you at times feel it’d be easier if…well, you get the picture.
When my son was growing up and we would hit plateaus in his progress, whether it be with self-help skills or language or behavior, I silently thought to myself that it would be easier if I had to care for and deal on a daily basis with a physical limitation. The same applies to dementia. Along with old age comes failed physical health. It’s just a given. However, a failed mind is just so difficult to watch further deteriorate. We are now beginning to see physical deterioration in my mom, as well, but the progression is just now starting to catch up.
And then there’s the male ego that plays into it. Women are natural caregivers. I have seen (and heard) my dad do things that I would never had imagined he’d be capable of, even as recently as five or ten years ago. He has always been a very well-taken-care of vibrant “young” man…and to know that he, at age 81, is taking my mom into the shower with him, giving her pedicures, taking her to have her hair done, cooking her favorite meals…and don’t forget the banana splits or ice cream floats for snack time at night…just proves to me that when there is love between a couple – the kind of unconditional love that remains after 61 years together – there is no one, in your eyes, on this planet that can do the things that you can do for your loved one. I just know – we all do – that one day soon he is going to need outside assistance and it is going to tear him up inside. He will feel as though he failed, while we’ve all been watching him rise above a very difficult health situation.
So in closing, just as it takes a village to raise a child, it takes many bodies, much energy and many prayers and positive thoughts to care for a loved one with dementia.
“Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened” – Buddha – just as my mother’s light will continue to shine in all of us…