Losing my mum to COPD
Elizabeth talks about her mum’s journey towards end of life.
This story tackles difficult subjects such as end of life. We have lots of information about end of life, and if you’ve got any questions you can call our helpline on 03000 030 555 (Monday-Friday, 9am-5pm).
My mum was so caring and had a massive heart - always thinking of others before herself. When we were young, my mum would buy socks and some warm food and take them round to as many homeless people as she could and would always have time to talk to anybody who might need her help.
She was so free spirited and really lived for the moment. She was a dancing queen and had a wicked sense of humour. She was so young at heart. She really did make me realise that life is for living!
About 9 years ago, she was diagnosed with COPD – the day after her 42nd birthday. She was told she was already in the ‘severe’ stages – by this point she was struggling with her breathing and doing things we take for granted.
As she was so young, she was able to get a bullectomy 2 years after being diagnosed, where they removed the upper part of her right lung. This gave her more confidence – and she could dance again!
She struggled to get out
But a few years later, she was suffering repeat chest infections. She found it difficult to get out and about, especially in cold or warm weather. At this point she basically stayed downstairs where she knew everything was to hand and really relied on us to help her with the running of the house.
Her appetite was really affected and she was becoming increasingly breathless. Small things like getting up the stairs, walking the short distance from the living room to kitchen and brushing my sister’s hair would really exhaust her. All of this knocked my mum’s confidence, but she still tried her best to keep moving and set herself goals to try and stay active and retain some independence.
It was about 3 years ago that she really started to struggle. Her independence was compromised. She needed assistance with things like changing her clothes, changing her bedding, getting washed and preparing medication for the week.
I had to support my mum, but it was upsetting to watch her fight this hard
She was also undergoing lung transplant assessment - and this really did give her a determination to push through. She wanted that lease of life, to feel young and more able.
She knew she was on borrowed time - but she would push and push to the point of exhaustion to make sure she could see the transplant doctors in Manchester. I had to support my mum because that’s what she wanted, but it was upsetting to watch her fight this hard.
Accepting palliative care
After a long hospital stay the following year, even brushing her teeth left her gasping for breath. We were in and out of hospital so much.
By last year, she was in hospital more than she was at home. She had pain due to constantly breathing heavily. She had no independence at all, and contracted sepsis and pneumonia a couple of times.
It was then that the transplant team decided she was too unwell to go through with the procedure. She had 6 months to live - which would take her to just before last Christmas, about a year ago. She was told to concentrate on being comfortable and at home with her friends and family.
She was devastated. But she picked herself up. She thanked them and went on her way.
Her only goal was to have one final Christmas with us
I knew how much my mum wanted this operation, because she wanted to live so much. I felt devastated, but slightly relieved because it hurt me to see her struggling so much and I wanted her to feel comfortable.
She spent some time in a hospice, but eventually decided she wanted to be in the comfort of her own home. It was September, and her only goal was to have one final Christmas with us.
And she did.
We bought her so many gifts, but this time she didn’t care much for that side of Christmas – she just wanted her family.
It was strange, because once she’d met her goal she slowly began to prepare us for her leaving.
We lost our best friend
As a family we all experienced different emotions and reactions. My brothers and dad felt relieved because she’d struggled so much in her final days. My sister took it all in her stride. I felt desperately sad, because she was only 50. To see a woman with such a zest for life have to fight the way she did hurt me.
We all felt like we had lost a best friend.
It’s been a few months now and I still find it hard not seeing her at home, her not being at the end of the phone to call during your lunch hour and just not having the security of her being there.
I think people living with COPD are truly inspirational. They fight the longest fight fraught with uncertainty and are so strong and have a steely determination to get through each day.
This disease doesn’t discriminate. My mum was 50 years young when she died, and her mum was 36 years old when she died from it.
Palliative care isn’t giving up – it’s an opportunity to focus on the person instead of the illness.
The one thing I’ll always remember about my mum is her smile. I’d love waking up and seeing her smile in her hospital bed, or visiting her in hospital after she had a rough night and walking in the ward and seeing that she could still manage to smile.
That smile and big heart got her through some of the toughest times, but in hindsight her smile helped us so much; it really made us appreciate how positive she was even when she was struggling and the chips were down.
Agreeing to palliative care isn’t a sign of giving up – it’s an opportunity to plan and really focus on the person instead of the illness.
Do you have a story to tell? It could be about your lung condition, a friend or relative you know who lives with one, or how caring for them impacts your life. We'd love to hear what you've got to say!