Keep On Living Until I Feel Alive Again

My heart is completely broken since my dear Mum passed, nearly one year ago. I feel the deepest fractures within my very soul most keenly when I breathe. I spent 43-years and 362-days of my life with my Mum, and her absence is overwhelmingly felt.

I know I have to move forward. I have to keep on living until I feel alive again.

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Grief is a surreal place, caught somewhere between hearts bursting with love and breaking from loss.

So much has happened in the time that I’ve been away.

My sweet Mum was taken via ambulance and admitted to hospital on July 14, 2016, due to vomiting and diarrhoea. Her fever was high, and her breathing was short and laboured. Mum was moved from emergency intake to a unit the following day. The doctors did all they could to address her vomiting and diarrhoea by changing her feeding tube routine, but the best results were when her feeds were dramatically reduced to 1 canister of “formula” per day. I had been reducing her feeds, as well, because I felt in my gut that she was having trouble tolerating the intake, and her body was not processing properly what she was getting. I knew this was an early stage of ultimately losing her, and that made it proper to explore what our next steps would be. It was not an easy choice to make, but it was both medically responsible and ethically sound to proceed with Mum’s well-being and comfort as our priority. I discussed hospice placement with Mum’s attending physician, and she began the process.

Mum was transferred to a hospice in the late afternoon of July 26, 2016, and had received her last feed of 150 ml earlier that morning. While in hospice Mum got water flushes via her feeding tube, as well as sips of water by mouth.

Mum lasted until August 11, 2016, when she passed away peacefully at 01:00. She had my big brother and sister-in-law by her side when she took her last breaths, as I had recently returned home with my niece to grab a few things, rest a bit, then return to let my bother and SIL sleep. It was the night nurse who called at 01:01 to let me know Mum had passed, and we all (myself, my niece, my mister, my kids, and some very dear friends) returned immediately to the hospice.

We stood around Mum and listened to music. We kissed her goodbye. We cried. We hugged. We cried.

Right around 03:00 on August 11, 2016, we watched as two men from the funeral home took Mum away.

On August 12, 2016, we (my brother, SIL, niece, and I) went to the funeral home to make arrangements for Mum’s cremation.

On August 13, 2016, I returned to the funeral home with my mister to identify Mum’s body and spend an hour with her to say goodbye. The picture below is from that day.

This is a terribly painful post to write. Grief is a surreal place, caught somewhere between hearts bursting with love and breaking from loss.

Dementia is the Longest Goodbye

With all of the information I’m getting regarding my Mum, and the events of the last 48-hours, I’m finding my head and heart are at odds.

I’m committed to caring for my Mum and seeing her through to her last breath, attending to her every need to the last, I just want to make sure I’m doing what’s right for her, too. Just as a Mother or Father will question whether their choices are right for their children, I question if my choices are right for my Mum.

I am leaning toward the hospice option, specifically because I’m aware that my Mum’s needs will soon exceed what I am able to provide. I’m also realizing that my Mum needs me more than ever as her daughter and not her primary nurse. I need to be able to love and comfort her through her passage to the Summerlands, and grieve for her properly through these phases leading to her passing.

I know that I am losing my Mum. I’ve been losing my Mum since her diagnosis of early onset dementia with lewy bodies at the end of 2010. I’ve watched her slipping away since she moved in with us on March 27, 2013. I’ve seen rapid and sharp declines that took more and more of who she was away, followed by a plateauing and lull that gave us time to adjust. Over this past year I witnessed my dear Mum lose her ability to walk, and not 6-months ago she lost her ability to swallow efficiently. It was 4-months ago she spoke her last sentence to me. Very slowly, on New Year’s Day, she said: “You… are… so… amazing.”

My Mum is the reason I love to read and do crafts. I’m so glad my Mum was my Mum. I love her so very much, there are not sufficient words to describe it.

It’s so bittersweet and heart-wrenching, and all we have is love. Nothing else makes any real difference. Love is all that really matters. Dementia is the longest goodbye.