Reflections on my Mom a year later.

I dreamt about my mother last week. It was a year ago that she died, and I guess that experiencing this first anniversary has put her clearly in my mind. Her death seems like it just happened in some ways – and in other ways I feel she has missed so much. Strange that after a year, I still look for the blinking light on the phone beside my bed every single time I wake up.

It was there so often. All through the day, particularly at ‘sundowning’ time – around 6:00 p.m. at night – when the bad behaviour among several patients would escalate. Far worse though, were the episodes at night. I would wake up several times in the night to check the machine and if there was a message it was never good news.

My mother was calling for me. To be more exact, my mother was screaming for me and someone in her care facility was calling me to have me come in and try to calm her. I always could, luckily. The hysterical screaming, paranoid delusions and seething rage would completely overcome her and last until I got there. I would be holding her and telling her “It’s okay, I’m here Mom. You’re safe. I’ve got you.” But the saddest part wasn’t when she was in the middle of these horrible occurrences.

No, the saddest part was when the episode ended. She would suddenly get quiet, and start looking around at her surroundings, and at me. Then she would slump her shoulders and shake her head sadly. She always put her hands on my face and said the exact same thing: “Oh my God Kid – I am so sorry.” It was excruciating. Much harder than her attacks on the staff and other patients. In the aftermath, she was embarrassed and afraid – two things she had spent her whole life overcoming.

She was desperately unhappy and told everyone that would listen that she couldn’t stand to live this way. She could not believe the things she had done – scratched a woman in a wheelchair, thrown dishes at a non-verbal elderly man when he didn’t respond to her, or knocked the computer and everything else off the Manager’s desk. When she physically attacked a young volunteer with Down’s Syndrome, they had to call the police. She would have been devastated if she had believed she had done it. She couldn’t believe it. It was too painful for someone who had lived a life of extraordinary kindness and grace.

I was lucky though, I know. The place where she lived the last part of her life was only 15 minutes away from my home.  It was also top of the line. It cost more than a suite at the Plaza Hotel but that was because it allowed us to still pretend. All of us.

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We would pretend that she choose to live there, behind the beautiful doors that were kept locked all the time. We would pretend that she choose to wear the horrible shoes with the velcro closures and the endless array of stretchy polyester clothing that could withstand the constant washing that her sloppiness and incontinence demanded.

We would also pretend to care much more than we did. The staff would feign a sweet attentiveness that I imagined did not exist when I was not in attendance. I would play the dutiful daughter that was never frustrated, or embarrassed, or almost paralyzed by the grief for the loss of the mother that once had been so wonderful.

We would pretend that the end wasn’t a blessing for everyone.

And yet in my dream last week, it wasn’t the mother of the last few years that I was with. Not the shrieking harridan who was hallucinating, nor the terrified, despondent, woman who didn’t want to see her closest friends. The mother in my dreams was the fabulous, funny, unique mother from 10 or 15 years ago. What a pleasure to spend some time with her. I woke up laughing.

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Song for the Dying

It’s not as sad as you think. When I tell people that I spend my free time sitting with those who are dying, they are often convinced that it must be a tragic, grief riddled event. It’s not. But they don’t want to hear about it.

It must be our culture. We choose to ignore death as much as possible and, if we deal with it at all, it’s in a reverent or sad manner. We fear death like nothing else. But here’s a scoop: Nobody gets out alive. As Springsteen sings : “Everything dies baby, that’s a fact“. Death is just another element of life.

Often the person who has truly faced their own mortality finds a heady new sense of freedom. All the little things, annoyances, resentments, all seem to fade away. They want to spend their last remaining time on earth unencumbered by negativity and petty concerns. Things that once seemed so important are now completely insignificant. There is letting go in their acceptance.

Of course, not everyone gets this far on the Kübler-Ross stages of grief. Some get stuck in anger, some in bargaining. “Why me?” they ask. “Why not you?” the world answers.

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The time spent in the company of the actively dying is intense and extremely rewarding. Remember – as a visiting volunteer for a Hospice these are not my people. Not my loved ones. I am there only as a tool to assist the patient in any way that I can, or as a respite for their caregivers to let them have a few hours away from the constant stress of ongoing care.

For someone who is so often in charge, it is a very good exercise for me to place all my own beliefs, and concerns aside.  My opinion matters not at all.  I follow their lead entirely.

My role changes with every client. Some want only to talk about their illness; the diagnosis, the progression, the prognosis. New methods of treatment, operations with different outcomes, a thousand “what if”s fill their days.

And they know that they are dying. When you have a hospice volunteer show up, it’s pretty clear where we are heading. However I have had more than a few occasions when a family member has said “don’t let her know how bad she is – there is no point in upsetting her”. And then the patient will say “Don’t let them know this but I’m not going to make it.” The dying almost always know.

Some never even mention their impending demise. They want to talk of happier times from long ago – the birth of a child, often grown and far away. They share memories of the war, of falling in love. It’s a privilege to hear. And because I am not part of their family, they are free to say anything to me, with no fear of repercussions. I have been told amazing things that I can never share.

Some don’t want to talk at all – they just want to listen. They want me to read to them, from a favourite book, or the daily paper. They ask me to tell them stories to make them laugh – to forget, if even for a moment, how temporary it all is.

Sometime they ask me to sing. I close my eyes and sing.

For this, I am truly grateful…

My mother died yesterday.  These are the things that I am grateful for today.
 
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#1 – that I was overwhelmed with support from the dear friends in my life.  Sitting beside me in the hospital, dropping off homemade soup, helping me clean out all of her personal belongings. Flowers, cards, phone calls, texts and emails – dozens and dozens of them. My heart is so very grateful.  That most knew and loved my mom just made it the more bittersweet.
 
#2 –  that I live in Canada where dramatic medical events are not financially life-altering events.  The last thing anyone in a crisis wants to think about is how much that bandage/nurse/procedure is going to cost.
 
#3 – that my children step up –  that they are not so far away that they can’t be here with me at a time when their very presence is such a balm to my spirit.  While they each grieve their own loss of a beloved grandma, they are here for me.  And each will participate in her funeral service to show their respect for someone who was such a great part of their lives.
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#4 – I am incredibly grateful for the nurses who dealt with us over the last two weeks.  From the emergency department, through medical tests, and finally to palliative care, their professional support, kindness and patience, even with their heavy workload, was consistently generous and thoughtful.
 
# 5 – I am, as always, so blessed with a husband who stands by my side to offer whatever I need.  Who can laugh with me, and cry with me, or just walk the fields in silence to let me feel what I need to feel.  He is grieving too – for the mother in law who defied all the stereotypes – but is rock solid is in his support for me.
 
#6 – How lovely to mix the past with the future around her deathbed – from the son of my mother’s best friend – who has been a true friend since the first grade,  to my son’s fiancee who is a new person in my life and has become a brave and loving member of our family.
 
# 7 –  Finally, I am above all grateful that for a few moments over the last weeks, the mother that I know and love was able to swim up through the horrific fog of her increasing dementia to fully be the person that she has always been.  It was a gift to be able to actually speak with her again, if only to let us say goodbye.
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She joins my father now, and their love story is complete. I am crying now not for the loss of her, but for the gift of her, throughout every day of my life.