Caring experiences - end stage of life

[Elizjohn]

Just wondering if anyone is or has been a carer for someone with end -stage COPD/emphysema?

I'm currently caring for my dad who has end-stage COPD and thought it would be nice to have someone to share experiences with. It's a real rollercoaster.

[carrina]

Hi, i cared for my mum with that. She passed on in 2011. It is so stressful for anyone suffering as they do and mum used to get panicky not being able to breathe right. I studied to become a carer after mum died and i learnt so much more about how i could have been more help to her. But i done the best that i could do for her at the time as she never wanted to go into hospital and she didnt. She passed away at home . I was also diagnosed in 2017 with moderately severe emphasema and find breathing exercises really beneficial. Also the meditation videos are good to listen to as they can be quite relaxing.

[Elizjohn in reply to carrina]

So sorry about your mum. Dad is now palliative care at home so he won't be going back in hospital. He lives with us and it's hard balancing caring with work and my kids. He's had so many flare ups I feel like I'm constantly on edge. I'm not sure how long he will be with us and that's upsetting. He's bedbound and not eating/drinking very much but he's not in pain and although his sats are low, 83%, his body is used to it.

[carrina in reply to Elizjohn]

Thanks, and sorry to hear about your dad also .

[Riverhopper]

Hi

I lost my dad over 10 years ago to emphysema, he was not end of life and took us all by surprise when he died at hospital. I lost my mum to lung cancer last year and she managed to have a "lovely", pain free, peaceful ending at home. Myself and my 2 sisters were mums carers at the end. Do you have someone supporting you? I dont think I could have done quite so well by mum without my sisters.

Which I had known about this site with mum and dad, I find it supportive and informative

Stay strong

Anita

[Elizjohn in reply to Riverhopper]

Really sorry about your parents. I lost my mum to bowel and secondary lung cancer 4 years ago, it was very unexpected and she went quickly (within 2 weeks of diagnosis). She went to St Luke's Hospice and passed away peacefully, it was a relief that she was so well cared for during such a nightmare situation.

I'm lucky to have a great partner who helps with my Dad and we have carers who come 3 times a day to deal with his continence care. Dad has had COPD for such a long time that he was always the parent we were worried about, which is why my mum was a shock, and Dad's end of life stages are so different to my mum's. Dad's is a slow deterioration. I keep thinking he's in his final stages and he pulls round. Last week he was sleeping all the time and barely eating/drinking, very breathless. This week he's much brighter, sitting up in bed and eating a little better.