As the old saying goes ‘once a nurse, always a nurse’ and ain’t it the truth. I loved being a nurse practicing for over 17 years but never in my worst nightmare did I think I’d have to use my skills to care for a loved one at the end of their life. And let me tell you: nothing prepares you for caring for your child who’s only 20 years old and at the end stage of their life.
Jacob accepted the news from the doctors that there was no more they could do with the wisdom, strength, bravery and patience of a man much older than his 20 years. We sat in silence after the medical team had walked out of the room, stared at one another as mum and son and cried together.
Jacob was never one for needing to talk to specialised people about the way he was feeling. When he was asked if he wanted to talk to anyone, he’d always decline and say to me later: ‘we’re doing ok aren’t we mum, just you and me!’ Yes we made a pretty good team. But I did seek out other people to talk to. I needed to connect to other parents who had dealt with similar situations and scenarios. He knew I belonged to specific Sarcoma sites on Facebook and we’d read the positive inspiring stories together of people getting cured and getting on with their lives. Reading these posts gave us hope. It was when I was on my own that I would read the not so pleasant stories and begin friendships with parents online, comparing stories and asking for advice. I still have connections online with some of these people today. Social media has helped pave the way for those harsh and true experiences of the end of life stories to be spoken, heard and shared.
Jacob’s disease spiralled out of control when we brought him home from hospital at the stage where he could no longer walk, had no control over his bowels, bladder and new sarcoma tumours were appearing on his skull, sacrum and spine causing paraplegia. Pain was savagely invading everywhere else within his body in spite of his paraplegia.
I think this is where the nursing instincts kicked in and that of a mother tuned out, although I dearly wanted this role reversed. Caring for your adult son came with awkward moments which led to his modesty flying out the window. As a young man he was never fond of the nurses offering him a bed bath. Before he had a catheter inserted I would have to help him position the bottle between his legs in order not to wet his bed.
From the time we brought him home to wrap up in love and make more memories to cherish and tick items off his bucket list our house was never empty. We had wall to wall mattresses that covered the floor in both the ‘good’ room and family room for his mates to sleep over on. When his mates were with him that was when I caught my breath. I caught up with a week of no sleep within a 7 hour shut-eye. I had purchased a new lounge with a fold out sofa bed next to his bed so we had easy access to those regular repositioning turns every night and to empty his catheter. During those quiet days, we’d all snuggle up together on it and watch his favourite movies.
We were inundated with gifts from family and friends in the form of food and petrol vouchers from Woolies and Coles. We were given food hampers that people had put together as we always had a house full and people to feed. I don’t think I cooked a home cooked meal for the last month of Jacob’s life, we were blessed with other people’s family favourites. We kept an open house policy (except if you were unwell).
I was with him from the beginning of diagnosis, during treatment spending thousands and thousands of dollars in accommodation and travel expenses within the year to be with him and care for him in the final 37 days of his life at home.
I savoured those moments when I transferred him from the bed to the wheelchair as a mother and son cuddle, as he gripped his long skinny arms tightly around my neck, and I gladly took everything I could. Every touch, every look, every smile, every tear was etched deep in my heart to treasure.
Jacob created a bucket list to complete. We enjoyed everyday we were blessed with and made more wonderful memories to cherish.
It was gut-wrenching to watch Jacob as he was nearing the end of his life and there was nothing I could do. It broke my heart to think that he felt as though he needed to reconnect back to his religious faith in the hope that he would make it into Heaven, to forgive his sins to make it a peaceful transition. He smiled as he said ‘I’d like to think I’m still a bit religious.’ How could God resist such a beautiful soul?
With my nursing background and great support from family and friends I didn’t utilise or even know about the extra assistance that was available for things like transport and the convenience of blood tests in your own home, so please ask about any assistance available and use it. Don’t be afraid to use it because that is what it’s there for.
I had cared for many people during my nursing career at their end of life as they took their last breath. I knew what it looked like and sounded like. But I was still so ill-prepared for seeing my beautiful brown eyed boy struggling and using every ounce of energy to draw air back into his lungs. This was not the image I wanted to imprint in my mind and that wasn’t how I wanted to remember him. I had to ring the nurse for my mum to ask her if he was supposed to be making that much noise, I needed reassuring too I guess. Yes, the noise Jacob was making as he took his last breathes was ‘normal.’
Nineteen family and friends gathered around and said their goodbyes to Jacob with words of love, hugs, touches, kisses, smiles and tears as his favourite songs were played from his phone.
Say all the things you want them to know for the last of the senses to go is ‘hearing.’ Let them know ‘it’s ok to go’ even though it isn’t.
Jacob remained on his bed in our home for another four hours. We clipped his finger nails and washed his hair, gave him a shave as he’d been out of treatment for a while and his facial hair was beginning to return. I still wanted to mother my boy any way I knew how. One of Jacob’s friends who was with us as he took his last breath, phoned his parents and the next thing we know is that food was delivered on our breakfast bar -hot bbq chickens, fresh bread rolls, potato bake and salad, which happened to be one of Jacob’s favourite ‘go to’ entertaining food. We sat with Jacob on his bed and on the lounges in the family room and shared his favourite meal amongst us all as we had in years gone by with constant chit chat and stories being told of Jacob to keep his spirit and memory alive. He is still with us in our hearts and with his guiding love from afar he is helping us to ‘smile’ again – see miracles in life everyday.
The end-of-life deserves as much beauty, care and respect as the beginning. I will quote some special words from a beautiful writer Lexi Behrndt: “When a child dies, a parent is still tied to that child. Souls, tied together across universes. It doesn’t matter the age when they passed. It doesn’t matter how long ago it happened. It doesn’t matter – none of it. Their souls are forever tied. That’s the love of a parent. That’s the love that is more powerful than death. That’s the beauty of unconditional love.”
This is our story.
I saw Jacob’s first and last breath, although it was never meant to be that way. Jacob was here and his life should be celebrated, it won’t make me sad to hear his name mentioned, it is music to my ears.
‘Stay golden, Ponyboy’ (a quote from the movie ‘Secret Life of Walter Mitty ‘)
love mum x
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This information was extracted with permission from Violet.