Losing my mum to COPD

Elizabeth talks about her mum’s journey towards end of life.

Elizabeth McCulloch and her mum

My mum and me

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.

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). 


Elizabeth McCulloch

Elizabeth McCulloch

Elizabeth looked after her mum as she approached the end of her life. She comes from Liverpool and is training to be a solicitor.

Comments

Im really sorry for ur loss. I know as i have server copd, and it can be very lonely and hard, sometimes ppl close to u dont teally understand wat u go through in a daily basis. Im lucky like u to have a loving family. Im also 50yrs old. And ur mum will be so proud of you. God bless. Xxx.
Totally agree . Forward planning is so important and so many opportunities are often missed to have those conversations with patients . It's such a rewarding thing to help patients plan towards the end of life and it's empowering for them also.
well done elizabeth xxx
This story seemed so familiar to me. My mum paseed away in may one month after her 49th birthday. We had barely any interaction with pallitive care as she got very unwell very quickly. Now my nana is struggling with it. This story reminded me that I'm not alone in grief because of this horrible illness
I really respect how you admired your beautiful mother. We have lost a family member to sepsis on Sunday after a long hospital stay and before that I took care of my mother in November after her knee replacement due to advanced osteoarthritis. I identify with your mum since I'm also described as the dancing queen of my family and I'm 38  and also called young of heart. I really struggle with asthma, and battle to get proper sleep because of it and become depressed. But the difference it I get negative. Your mother is an example as she maintained a positive outlook and in doing so left you with beautiful memories. How continued to value her is admirable. As dearly as I love my mother it's very difficult when she in pain every day and she gets tired of being miserable and I feel guilty about being tired of caring of for her. So all my respect goes out to you for your wonderful example and I will remember to try to smile instead of my usual scowl. 
Reading Elizabeth's letter I really felt for her,I am in the exactly same place but I feel I am hanging on by my fingernails . I am in and out of Hospital like a yoyo finding it really hard especially when it comes down to my housework but I cannot do any thing , to go out the weather has to be just right with no rain,wind cold again I keep getting infections in fact im in the middle of one now and then the pneumonia, sometimes I am so scared. I have a wonderful family ,my husband and 2 daughters are so brilliant I have days when I pray for more air to breathe but each day I carry on. Im hoping Ilast out ttill March 2018 because it is my Diamond wedding anniversary so Im keeping my fingers crossed. I hope things are getting better for Elizabeth and her Family nd that the happy times they spent when their Mum was alive will keep them going. Dorothy
So sad i wish you and family comfort at this time.i have copd and know the struggle and breathlessness.
I am a hospice at home nurse and care for patients like Elizabeth's mum, her mum was a very courageous person and so is Elizabeth. It is one of the worst time losing a beloved family member and I just want to congratulate Elizabeth and her family for ensuring that her mum did it her way. I have a lot of respect for you, brilliant.
Thank you for sharing your story. It has really helped.
I am so sorry to hear that your mum has passed. I have COPD and know how difficult life can be. Your mum was a very brave and courageous woman with a lot of strength and love for her family.
Inspiring story , thankyou . I am helped by your the loss of such a brave mum .
Firstly you are a strong young lady to get through this. My mum had c.o.p.d. emphysema which she had for 15yrs its an awful illness and there should be more awareness and more funding for better treatments I miss my mum dearly and now my brother has it his symptoms are exactly the same as your mum where they want to do lung surgery which he has refused cause he don't think he'll make it sending our love to your family keep strong leep together.x
Such a lovely story , your mum was such a courageous person , with the love & support you &your family gave her was amazing , my sister was diagnosed with copd a few years ago unfortunately last year at the age of 52 she took her own life its such a shock hard to deal with but we pick ourselves up continue in pain my love to you & family x

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25 January 2017