It was six weeks ago. A phone call from the Nurse Manager, at the hospital where Mum had been for the past three months, on a morning when I had decided my fatigue was too much to go see Mum. The Manager told me Mum had collapsed moments ago. We had long since planned for this moment and she was wanting to check my ‘end of life instructions’ for Mum. But I didn’t really get it.
A few moments later I did get it. I dressed faster than I thought possible. I drove there, wishing that there had been a dementia facility nearer. When I got there, the nurse on reception told me Mum was in her room with paramedics. She told me to run!
She told me to run! Then I really started to get it.
Mum’s room was a long way down the corridor. We had been amazed when she had managed to walk down that corridor, twice a day. I knew it was Mum’s fierce determination, in spite of complex mobility issues, in spite of Alzheimer’s Disease, in spite of recent Congestive Heart Failure.
As I ran, staff members stepped back out of my way. A couple touched me on the shoulder as I passed. It was almost surreal.
I really got it when a Paramedic held her hand up at me to stop me as I ran towards Mum’s room. What was my name? I told her. She knew it was me she was waiting for. I couldn’t go in. Mum had just died, minutes ago and I needed to wait a few minutes while they finished up. But I didn’t want to wait. I needed to be with Mum.
Mum had just died. I hadn’t been there with her. My wish had always been to be there with her in her last moments. But I hadn’t been there.
I had not made it to be there with her, but apparently, she knew I was coming. They had told her that I was on my way. Mum was not alone, instead surrounded by staff who cared and paramedics. No matter how much I tell myself that, there is also a sub-text saying “it’s not the same. I wish I could have been there with her”.
Mum was not alone. But I was quickly realising that I was alone.
That morning was the beginning of the weirdest time. For years now, my focus has been on Mum. Caring for her. Making sure that her every need was met. As her Alzheimer’s Disease has progressed and her mobility has regressed, I attempted to do, or make happen for, everything she needed.
I always knew in my heart that when Mum died she would finally be free of illness, disease, pain, confusion and suffering. Finally free. And so her death came to me as a relief. It was over and while I don’t have clear theories about life beyond death, I had a feeling that she would be free and she would be with my Dad who died eight years earlier. What’s more, I recently thought that she would know who Dad was (she had forgotten both him and her 53 years marriage thanks to Alzheimer’s).
But back to me. Many people had questioned me, especially in the past year. What was I going to do when Mum died? How would my life change when Mum died? Actually, the questions came thick and fast to a point where I was getting annoyed. Yes, my life would change but I couldn’t focus too much on that right now. Mum needed me to focus on her. And I did.
Life has changed and I’m still working out how and what to do about it. It’s only been six weeks and I’m in a state of wonder. Wondering what the hell just happened. Not only has my mother gone. But I’m an orphan now. And I did not expect that. And gone too, it seems is my purpose.
Okay, so I knew in my mind that when Mum passed on that I would be an orphan. I just did not expect that I would be hit by that. I hadn’t given it a moment’s thought. But now I can’t stop thinking about it. It has hit my heart. Ouch!
I don’t have (living) parents anymore. They’re gone. How do I deal with that? Does that mean I have to be the grown-up now? It certainly means I can’t ring Mum and Dad when I get stuck or have a problem I don’t know what to do about.
The thing is that since my Dad died suddenly, my focus has been on Mum. You could say that Mum’s Alzheimer’s Disease meant that I didn’t really have her to call on anyway. Some people have gone so far as to say that I was ‘the parent’ in my relationship with Mum. Some people have said that she was ‘the child’.
Does that mean I was already an orphan? Does that mean I was already alone? Does that mean I already had to be the grown-up? I blame no one for taking that approach, but it’s not my approach.
In my understanding of Mum’s illness, I chose not to see her as a child. Or me as the parent. Yes, there were aspects of her behaviour and thinking that I could see were childlike, but she was always my mother. While I couldn’t turn to her for support like I might have when she was well, it was important to me to respect her dignity as an elderly woman. Part of me doing that was to choose not to see her as a child.
And so back to me. I have found myself alone. It’s weird. And scary. I’m really alone. Right now, there are dark clouds in my sky. I don’t know when the blue skies will be back. Or even, if they come back, what shade of blue will they be. I don’t know what is ahead.
I knew all this was ahead of me when Mum died. I knew she would die some day. I always knew that’s the direction we were heading. But still, I did not expect this. I knew I would grieve for Mum. I knew my life’s direction would have to change when she died. But I didn’t expect it to be like this. I didn’t expect to be so lost. I didn’t expect to wake up the morning after and wonder what I’m doing here (as I did).
I was finding things pretty hard going at the time Mum died. It was really tough balancing Mum’s ill health with my own ill health. It didn’t seem like there was room for both anymore. The problem was her health was getting worse and so mine seemed to be. How did I continue to make her the priority when my health was needing me to make it more of a priority. I had no idea how much longer Mum would live, but I had to focus on her needs like she might live forever. She might live for ten days and she might live for ten years. It just had to be that way to see her day to day needs met. It was completely illogical but completely necessary.
Obviously, I don’t have the answers worked out. It’s only been six weeks. I know what it’s like to live through a major earthquake, and this feels a little like that. I don’t know what life is anymore. The land has shifted and I’m trying to see where the goal posts are now.
I chose not to speak at Mum’s funeral. I had wanted to but my brain fog was really bad that week and words were coming out of my mouth that weren’t what I expected. I was worried about what I might say (even if I had written in front of me what I intended to say). So I chose to read a poem instead. I’m in no way a poet, and so found a poem that I was able to change a little to say what I needed to say to Mum. My intention was to share with you a link to the original poem, but the link I had accessed has been removed and I haven’t been able to find another. So I share my words, but please know that I didn’t write most of them. I just altered to what I needed. I hope the original author didn’t mind.
They are simply something of what I said to Mum when I finally spent time with her after her death six weeks ago. They might seem a little strange, but Mum would now understand. And that’s what matters. Mum would no longer have any difficulty in understanding or being understood. That’s what would make this all worthwhile.
It took away your days and nights
And time became a blur
It sucked your speech right from your mouth
And your words became only a few
It slowly imprisoned you from your life
When you couldn’t walk for miles
It haunted your sleep and made you scared
And wiped away my smile
Because it’s not just memory loss
That dementia brought your soul
It gave you torturous unwanted gifts
To replace the ones it stole
It added to your radiant laughter and joy
Agitation, fear and silence
It stole your independence
And made your world become less clear
I daily watched you disappear
A little more each day
I wished, but all so helplessly
As it stole you right away
And in the end are precious memories
That you possess no more
But instead I treasure them
Deep within my core
I do not know if you remembered me
Or if I’m stolen from you too
But Dementia will never ever steal away
The love I feel for you.
(If these are based on your original verse, please let me know so that I can give you full credit)
** Rest In Peace **
Norah Evelyn Reddell
1928 – 2019
Thanks for reading!