When I walk into the dementia ward of the long term care facility that is now home to my mom, her eyes light up when she sees me. Does she know I’m her daughter? I don’t know. But she sure knows that she knows me and she knows that she loves me and that I love her back.
It is this language of love that is causing me to shift perspective on my mom and her dementia.
We think her symptoms began the year my youngest son was born – 2002. Naturally enough, it was my dad who really began to see them – the forgetfulness – forgetting how to do things she had done all her life, even simple things like how to make a sandwich or turn on the washer. Tucking folded tissues all over the house – in drawers, under pillows, in her purse, in her pockets, in the toilets. Watching the weather network for hours on end and complaining that it was the same thing over and over again but not remembering she could change the channel. Falling asleep in her chair.
Like so many other families dealing with this issue, we eventually faced the dreaded decision about long term care. My dad was her main care giver and had reached the point of exhaustion with 24 hour care for her and especially interrupted sleep both because mom began to wander a bit at night and because she had incontinence. My dad showed a whole new dimension of himself and of his love for my mother as her caregiver – something I never imagined I would ever see.
The day we took her to “that place” and walked away and left her was one of the most difficult days of our life as a family. To see a wonderful woman lose her capacity to speak coherently, to dress herself, to care about her appearance, to become someone other than the woman we all knew and loved, living with a ward full of people who have also become someone other than the person their family and friends all knew and loved.
My mother has been there for almost two years now. The scope of her life is this ward. She has some mobility issues that make it very difficult for us to take her out. It’s hard to get her moving without assistance and if she refuses, well, that’s it. She used to just sit in a chair, looking out the window. Now she has a wheelchair and can that woman move! It is hard to pin her down to one spot.
I reconciled some time ago, that this was no longer the woman who raised me and I just needed to be present with the woman who was now there. If I responded to her incoherence as if it was a fully formed thought and created a repartee with her, her spirits were fine. If I was to get stressed or upset, she would too. That was the first level of my discovery.
I have often wondered as I walk through the long term care facility filled with very old, sleepy people, to the dementia ward in back, what is the meaning of life when you are so old and incapacitated, just waiting to die or living in your own little demented ward with a whole bunch of other people also living in their own little world.
As I’ve pondered this, and visited with my mom – being present with her – I moved to my next level of discovery that is really shifting my perspective on my mom and her journey with dementia. This is a soul’s journey. When I visit with my mom I am not visiting with the personality and the ego that inhabited her body for all those years before dementia. I am visiting with her in the spirit of her soul’s journey. If I can look past unbrushed teeth, unkempt hair and incoherence, and my own sorrow for the loss of this vibrant woman and mother in my life, I can actually be with her in spirit and it is her spirit that shines through her eyes with delight when she sees me. Her soul is connecting with my soul and she is relating to me on the level of soul, not the level of this physical plane.
I need to see her with new eyes in order to be in a place of appreciation for her journey. I know that sounds odd and yet I can’t change her journey as much as I might like to. I could be stuck in lamenting what I perceive to be her loss, or I can begin to see her in the beauty that is called forth in her as I greet her in the context of the soul journey.
“That place” is her home now. She is well cared for by all who work there – people with special gifts of love for their charges that shines forth in how they treat them and interact with them. There is a community of support – not just for her, but for my dad too. Because it is in a small community, the irony is that there are a surprising number of friends who show up at the same time in this place – each living in their own little world that most of us would consider a confined space, each traveling their own soul’s journey.
Yes, it’s tragic but there is a strange kind of beauty that also shines forth and really shows up when invited. And – when you’re visiting, there is never a dull moment. Lots of stories that may be told someday or may have already served their purpose in causing laughter and making for a little brighter day.
Thanks for this post Kathy. Very timely for me.
It is amazing how many people I know who are living this with family members now. It is a curious journey and you have reminded me that the only way to really sit with it is to understand it as a soul journey – my mother’s more so even than mine.
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