People need to be honoured, people need to be written about.
In 2017, I wrote about my dad as he lay in a coma. It got lots of attention. He fell and lingered for weeks before he died. This post I honour my mother, but I doubt it will get as much recognition.
My mom is alive, but the wonderful character, the beautiful person who she was is almost dead.
My mom has advanced dementia. Her last real grasp of reality died with my father, but she lingers.
We moved her to Ottawa after my dad died, and when Covid allows, we visit her. She has endured months in the hospital after a broken hip, but she rallied and survives.
Today I had a visit and she railed at me, she screamed when we tried to give her medication.. She shouted at me when I wouldn’t bring her home -what is home??
She clawed at my visor and spit at me. I tried to distract with an old movie, she was a lover of old movies. Today it didn’t work.
I took her outside, I toured her around the residence. She complained – really loudly, that this was not her home.
For one moment, I think more of myself. I have no family to help with this. There is a brother, but he is in so much psychic pain he is not able to help.
I witness this and I have to remember. My mom was a good mom. My mom loved us and made our home the hub that all my friends felt comfortable coming to. Our place was always so much fun, she welcomed everyone to our place. we all grew up with her.
My mom was crazy, she would dance right into the super 8 film my dad was trying to take of beautiful cliffs in New Brunswick. My mom is who I talked to when I came home after too many beers who listened patiently when I blathered on about nothing. My mom let us use her wedding dress for a movie we were making. Who dived into the pool in that dress??
My mom was always there for us. My mom listened.
Now who is my mom? What does she think, what does she feel?
I am not sure she feels the absence of her wonderful partner. She talks about ‘Frank’ but I don’t know if she realizes he is no longer there.
Soon after my dad died, she told me a story. She was asleep in a different section of the room on the night he died. She talked about how he came to her that night and talked to her. I can’t remember what she said about that encounter, but it was a vision of comfort and love.
Now there are photos of the two of them together throughout the room, but I don’t think she recognizes them. Some times, I am Frank or her brother Paul also long gone. Sometimes I am Paul, but I am a bit surprised when she recognizes me.
Today her plea was to take her home. I told her that she was home, but really, that made no sense to her.
This is living with dementia. It is too easy to be angry with her because she is no longer the mom I knew. I write this to help me to remember to respect who she was even though she is still here. She is not who she was.
This is part of life, seeing your loving parent descend into something that resembles madness. There is no solace in this. There is no comfort, there are memories, but they are faded right now.
I write this out of great respect for my mom. I write this to remember. I write this to help me to me a loving son on the next visit when who knows what will happen.
Is it possible to mourn the living? I don’t know. I respect and love who she was. This is life, this is dementia.
Whole-Hearted 
Thinking of you Paul. You have said it all. Such a difficult and emotional time for you. Take care. Xo
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Paul, this post really resonated with me. My dad also had dementia. While he passed away unexpectedly before it got to the advanced level as your mom has, if he was alive today, I feel as though I would be writing a different comment. Thanks for honouring your mom, sharing some of her story, and being open about this struggle. I can only imagine the additional stress that COVID causes.
Thinking about you and others that are caring for, reaching out to, and thinking about elderly parents at a time truly like no other.
Aviva
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Hi Paul,
Thank you for honouring the Mom you remembered and respected. I do believe you can mourn the living. My mother also suffered from dementia and I found that I was grieving the loss of the Mom I knew as a child and young adult while my mother’s cognitive impairment increased. Like your Mom, she did not recognize me as her daughter but often mistook me for her sister. Although my Mom died before she reached the tragic stage that you are experiencing with your mother, I felt that much of my grieving was done. I knew she was finally at peace and truly had gone “home”. Try to hang on to those warm memories of your healthy Mom if you can.
Liz
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Paul, thank you for sharing this. It is heartbreaking. I wish you ongoing grace and courage.
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Paul: What a difficult road you are travelling. I was on that road with my mom and likely at the start with Dad. But it didn’t get that steep or rough. I don’t know if this will help but after raging against the disease with Mom, I leaned to cherish every moment with Dad and find some element of joy where I could. I don’t know if it will make your journey easier to handle but when it’s over, you will be thankful.
Nancy
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My heart is with you, Paul. One of the most challenging, tragic and agonizing results of dementia is that the lovely memories of a full life recede as the disease consumes the present. It is indeed agonizing to watch these changes happen and to feel utter helplessness to offer comfort. Thank you for honouring her life and for sharing your pain. Please know that I hold you in my heart and understand in some small measure the agony and blessing of this moment. Peace to you in knowing you are there for her. Judy
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Good morning Paul, I read your beautiful piece about your mother and the painful journey you are walking with her through dementia. It is such a terrible disease and I admire you for the time, the care, the patience and the efforts you are making to remember the whole story of her life. Covid has made coping with the pain more challenging and very difficult. I am preparing my self for my morning visit to my own mother. My mom is still in her own home and thankfully is quite clear most days. When she is stressed over something it is a different story. She lives alone and I visit every morning to make sure she takes her meds, uses her eye drops and has had breakfast. We enjoy a coffee and muffin together and I listen to the same stories, most of which are from the past. Many of the stories are full of incorrect information but I’ve learned not to correct them. Her version of the past is what she comfortably remembers and it hurts no one. On the difficult days, when I worry about her being alone and confused I cry as I drive home, I go for long walks and I message my sister in Toronto who hasn’t been able to help but who is a great listener and I give thanks for her. I have a brother as well who lives a few blocks from mom but who has offered no assistance. I’ve learned to let that go as complaining only upsets me. She has a male friend who visits most afternoons and I gave up trying to explain to the two of them the need for isolation. I can’t imagine what would have happened the past 14 months if mom had been living an isolated life in her home. I make supper for both of them and deliver it at 4:00. Ray, her friend heads home at 7. I feel very fortunate to not be handling this stage alone. I can’t imagine how difficult it must be for you. When covid is under control a senior residence will certainly be part of a pathway forward. Meanwhile, I will visit and listen to the stories and complaints, walk, message my sister, listen to music, grieve and celebrate her life of 93 years and hope there are more good days than difficult ones ahead. And, I will think of you and of all the other family members who journey with their parent through this dark disease. Take care of yourself. Wendy
Sent from my iPad
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Paul, I remember being welcomed into your beautiful home in Pointe Claire by your vivacious mother. She was always smiling and laughing and loved being in the midst of the action. That’s the Barbara that I will always remember. ❤️ You honour your mom and your dad by being such a steadfast and caring son.
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Paul, that is a beautiful tribute to your mom – Dementia is not pretty… it’s dreadfully awful… and hurtful to those who know and remember.
Sounds like your mom was a wonderful fun loving mother! Thank you for sharing your story… as I read with tears in my eyes…
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Great post Paul. So hard for us to be part of. I too wonder what is going on inside people with dementia (Mom living with this as well). She is lucky to have you as a son. Hang in there!
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