Found this on twitter
Author Elizabeth McCulloch
Caring for my mum was difficult but rewarding
Elizabeth talks about the challenges of supporting somebody with severe COPD.
About 9 years ago, my mum was diagnosed with COPD. She got progressively worse, to the stage where she spent more time in hospital than at home. She lost all her independence, and even small things like brushing her teeth left her gasping for breath.
She was only 50, and she was desperate for a transplant. But as she got more and more ill, she was eventually told she was no longer fit enough to go through with it. So last year headed home for one last Christmas with us, with 6 months to live.
We’ve always been a really close family. When mum was getting sicker we all took on defined care rolls - my brothers would cook, we’d all chip in for food shopping, my sister and I would look after my mum’s personal care, and I would liaise with the nurses and doctors about medication.
Eventually we would all make sure there was at least one person at home with my mum at any given time to make sure she had company and felt safe.
Caring for her could be difficult
It was difficult for us all. We’re relatively young, and my sister was still in school at the time my mum was sick. It was hard to juggle work with caring for her, and also have a personal life.
When you look after someone with COPD you have to be prepared for things to change and then plateau. COPD is so unpredictable - an exacerbation can come on quite suddenly, or a chest infection can brew and become life threatening. So you can’t plan anything or commit to much outside of being a carer.
The least we could do was to make the ride less bumpy.
People living with COPD are on a health roller coaster for a long period of time. The least we could do was to make the ride less bumpy.
When she came home from the hospice she was slightly nervous because there were so many people checking in on her at first.
She was completely bed bound and so it was hard to do things she would have loved. We set up the bed in the living room - which she hated at first.
We did, however, have quality family time together and my mum felt so much more settled knowing she could stay at home. We laughed, played music and were just able to be a real family unit, which have given us some of the most comforting memories.
Supporting my mum emotionally
We had to switch our focus to supporting her emotionally - she had increased anxiety, confusion and delirium. She also lost all sense of time, and so we would need to be ready to be with her through the nights a lot more.
When looking after somebody with lung disease, you have to be easy on yourself and take everything a day as a time. You will be tired, you will feel up down and you will feel physically and emotionally spent. Allow yourself to feel like this - is all part of healing.
I found it difficult. I felt guilty going to work. I could feel quite isolated at times.
I found it difficult. I felt guilty going to work, I felt helpless watching my mum do the simplest things we take for granted like walking across a living room, turning in your bed and brushing your teeth. I just wanted to make everything alright so my mum didn’t have to want for anything.
I was tired a lot and often felt like there weren’t enough hours in the day.
I could feel quite isolated at times. There weren’t many people who could relate to having a mum so sick with COPD. And people often don’t relate COPD with being such a debilitating disease, so having to explain this could be quite frustrating.
There’s so much information around on how to manage COPD, but very limited information on what to expect when the disease becomes terminal. The British Lung Foundation website was so helpful.
The uncertainty was also difficult. There were times when things looked bleak and we had to prepare ourselves over and over again for the worst - and she would pick up. When this happened, we were so happy that she was okay, but it lulled us into a false sense of security.
It was rewarding
Although it was often difficult, I appreciated being able to look after her.
I loved making my mum feel gorgeous. Little things like a pedicure or putting her creams on her face, and changing her nightdress and bedding would make such a difference.
Caring for her was the hardest, but most rewarding thing I have ever done. It was a privilege.
When my mum was bedbound and when her breathing worsened it was very hard to wash her hair. We found a self-washing shower cap that would wash your hair without needing to rinse it off. Small things like this made the biggest difference.
I loved saying good morning to her, and having our morning routine together. I loved lying in bed with her at the end of the day and falling asleep.
Caring for her was the hardest, but most rewarding thing I have ever done. It was a privilege.
If you care for somebody, we're here to help. Take a look at our information and advice about looking after someone with a lung condition.
Elizabeth comes from Liverpool and is training to be a solicitor. She enjoys reading, yoga, spending time with family and watching Liverpool FC.
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