On 16.12.15 at 10 am my mum died. She was only 73 and had suffered a cruel and fast cancer. I and my stepdad were with her when she passed. People tell me that will be solace for us in the end, maybe.
Mum had been a fighter all her life and we didn’t always see eye to eye. Two flints sparking off each other someone once said! But like a flint makes fire and fire is energy my mum would approach everything in life as an overcomer. In October she called by my house and told me her diagnosis. She told me it would be quick and she said “this was it”. I said mum you will fight this and she replied “no I can’t”. I think she began to die right there, under the weight of the diagnosis and when she decided that cancer would win.
My husband said that she needed strength from me. So, in the next month’s I tried many times to share my energy with her to see it dissipate when it passed over. So, I focused energy into my administrator mode. Talking to senior staff when admitted to hospital in an emergency, getting her the care she needed at home and ensuring the palliative care team knew her end of life wishes. Mum and I meanwhile planned Christmas at my house and we discussed what we would order and how I would take care of it all this year.
Just over a week ago she was booked into respite care to give dad a break from caring for a few nights. Mum was alert and active and in fact full of too much energy. I know now this was the cancer rampaging through her. On 10.12.15 she went into a fabulous respite unit run by http://www.ageuk.org.uk and never came home.
I rang her on the 10th and 11th and she was actively getting involved in activities and settling well. Meanwhile Dad was getting some great sleep.I relaxed a little thinking a break was what they both needed. I visited her on the Saturday morning early and she was in bed. I asked when she was getting up and she said she wasn’t. I joked “you are having an off day mum let’s get you up later”. She didn’t get out of that bed again until she left for the Chapel of Rest on the Wednesday afternoon. Mum had great care from the professionals and a quick and peaceful passing but that’s not the story here.
The story I need to tell is about a team of unqualified staff with no experience of palliative care amongst them. They were working in a respite unit that was not set up for death but they decided to give my mum a good death. On Monday social services planned to move her to a nursing home. Mum had already by then overstayed in respite two days and was too frail to go home. They found a home but it had just failed its inspection! I was ready for the fight mum would expect me to have for her. I spent Monday evening identifying the nursing homes skilled in palliative care who each had a bed and got ready to discuss this with the professionals.
I went into the home early Tuesday morning to meet the manager. I said I was not happy with the home being offered to mum, she said nor was she. She had discussed it with the team and they would like to care for mum until the end. I questioned if they were able to provide palliative care. She stated she would ask, actually she said “tell” her manager this was the teams wish. They would get the expert help they needed from the palliative care team, community matron and GP but they would lead her care.
Calmly, confidently and proactively they cared for mum as the family took shifts in sitting with her. Mum deteriorated very quickly and as she did the staff care and attention was increased. She died with her soft skin still intact, not a blemish or break in sight and cared for like I would expect from qualified palliative care staff.
What did these staff teach me?
- It’s about patient centred caring, doing what the patient needs, when they need it.
- It’s about paying attention to the family so they feel supported.
- It’s about giving a good, dignified and respectful end.
When mum died a care assistant was with us in the room. Later she and I had a hug, a cry and cup of tea. I thanked her for her care with mum. She said they all wanted to do it but were anxious they were not qualified. I said you are qualified in care and did everything mum needed.
I asked her if she had always been a carer? Same age as me, from the same school but she said she messed up at school that’s why she was a carer. I asked her what she would have done if school had been different. “I would have been a palliative care nurse” she immediately replied. I assured her today she had been a great palliative care nurse and she still had time to go qualify if she wanted to.
I’m not dismissing the value of the qualified professional but in life and death it is those that care – certificates or not that make the biggest difference. When you encounter real care its tangible – you can almost feel it in the air.
So, this Christmas when you think of all the nurses, doctors and social workers working Christmas think also of the army of care staff also. They might just be giving someone a great ending like those extraordinary people in an extraordinary place who made mums death a good one for us all.
William Blake: On Another’s Sorrow
Can I see another’s woe,
And not be in sorrow too?
Can I see another’s grief,
And not seek for kind relief?
Can I see a falling tear,
And not feel my sorrow’s share?
Can a father see his child
Weep, nor be with sorrow filled?
Can a mother sit and hear
An infant groan, an infant fear?
No, no! never can it be!
Never, never can it be!
And can He who smiles on all
Hear the wren with sorrows small,
Hear the small bird’s grief and care,
Hear the woes that infants bear —
And not sit beside the next,
Pouring pity in their breast,
And not sit the cradle near,
Weeping tear on infant’s tear?
And not sit both night and day,
Wiping all our tears away?
Oh no! never can it be!
Never, never can it be!
He doth give his joy to all:
He becomes an infant small,
He becomes a man of woe,
He doth feel the sorrow too.
Think not thou canst sigh a sigh,
And thy Maker is not by:
Think not thou canst weep a tear,
And thy Maker is not near.
Oh He gives to us his joy,
That our grief He may destroy:
Till our grief is fled an gone
He doth sit by us and moan