COPD

Losing a parent
1

My beautiful mum lost her 11 year fight with COPD in September.
I’m struggling with the constant feeling of guilt for letting her pass.
She was under the palletive care team since January, and placed on a yellow card end of August.
It all happened so quickly and we never really got all the information in regards to just what it all meant.

Now I’m left with the feelings that I could have done more to help her, to save her . She told me she didn’t want to die so now I feel guilty that I let her die. She was on morphine and modazalam and other meds in the last two weeks.

I just don’t know how to deal with all these feelings.

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Hello Kerry80,

I’m part of the Online Community team and I can see that you are new to the community - I’d like to thank you for bravely starting this thread and sharing how you are feeling. I’m so sorry to hear about your mum. Feeling guilt is a very common part of grief, but please remember it is not your fault. Most community members have sadly experienced the death of a loved one and so will understand some of what you are going through.

I’m sure someone will be along to offer their support, but I wanted to share a few resources with you that might be helpful.

I really hope you find the community helpful and a good source of support and I also hope you feel you can access more support should you need it.

Thank you again for sharing – please keep reaching out and know that you are not alone.

Take care, Rhi

3

Hello Kerry80
I am sorry for your loss and I feel your pain you are not alone. Sending you much love xx

4

So sorry for your loss. Don’t blame yourself honey, you did all you could. Your mum wouldn’t want you to feel guilty. Look after yourself and take time to be still, remember your mum, and heal in your own time x

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Wow…this is the post ive been lookin for everywhere.thank you for sharing. My dad died suddenly 16th september with an accute exaserbation of copd and i juat cant get my head round it at all. He was a fit man.he walked 4 miles every morning and ran twice a week. He ate healthy and lived for his kids and grandkids. He was at mine bouncing on the trampoline with my 2 year old then had a coffee, he went home which is over the road 2 mins away and rang me sayin he couldnt breath. I rushed to him and got him to our urgent care centre within 7 minutes(i chekt my call logs) then they took him and an hour later thwy told me he was gone. I cannot understand this at all. From being his normal self on the trampoline at 9am then 1538 pronounced dead. So sorry for your loss. We are not alone. X

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Im so sorry for your loss…its horrible isnt it, COPD?.

I watched my mum for 11 years slowly get worse and worse to the point where she couldnt be without a niv mask.

Its been 3 months since she passed and i am still replaying her last few days over and over, although theres not much to go over as she was filled with anticipation medications to the point where she was sleeping all day.

I cant even remeber the last normal thing we did, all my memories are of her being so pooorly she cudnt move.

Cherish the memory that your dad was enjoying his life right till the last minutes and try and take solace in the fact that he didnt have to suffer this terrible condtion the way my mum did, she was just a shell of the person she used to be. I wish i cold take back the 11years of suffering we all went through.

I strongly believe that there is not enough support for people and thier families suffering copd.

Now all i am doing is whatching my dad fade away, he cant function without mum.

Loosing someone you love sucks

7

Godbless you and your dad i really mean that. Wow 11 years. This is so sad. I really dont understand copd much but i have been reading up on it and im so glad my dad didnt suffer but on the other ha d i wish i could have said goodbye. His final 15 mins of his life was traumatic.panic was all i remember. My 18 yr old son whonwas the apple of his grandads eye was with me carryin my dad from his door to the car then into the hospital doors. Just sooooo traumatic and my dad was tdyin not t scare us and he jist couldnt breath. X

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Thabk u again for the reply…ive needed this site. Sooooo lonley even though i have my hisband and kids. Nobody understands. X

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I am so sorry for all you are going through. My mum passed suddenly in April this year from pneumonia which led to sepsis. Behind it all was COPD, which none of us knew about. I was heartbroken because i felt like if i had known i could have done more. It is such a cruel thing. But we have to know we loved our parents wholly and they knew that. You are not alone. Xx

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My daughter (also 18) kind of became a big part of my mums final care. She was there when she passed .

The only saving grace i can take from my mum passing the way she did was that she was at home and she passed the way she wanted to. Her biggest fear was not being able to breath ( like your dad - that must have been terrifying for you all).

Although we knew from day one of mums diagnosis we never thought we would have to watch her deteriorate the way she did.

I cant imagine how you and your family have coped with such a sudden and fatal deterioration.
Its utterly heartbreaking isn’t it.
I feel robbed of my chance to say goodbye although we knew the end was comming no way did we think we were looking at days … turns out mum knew she was dying but she kept it to herself for the last month of her life…

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Your right … no one understands

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I’m so sorry for your loss and totally understand how you feel. Sadly there wasn’t Anything you could do. My mother died on Christmas Day 2021 from type 2 respiratory failure brought on by COPD. She managed her illness and health for 20 years with numerous hospital visits when she had exacerbations. She was on the NIV for 20 hours a day until she stopped treatment. She said it was gruelling and punishing. It was terrible to watch her decline over 5 months, which started when she caught the RSV virus. She had to make a terrible decision to die when she didn’t want to leave us. At 57, I was lucky to have her for this time but devastated at her loss. With this awful disease there is no more anyone can do once your loved one hits their treatment ceiling except support them with managing it. 2 weeks later my gorgeous step son took his own life. Our year has been the worst. This Christmas we’re celebrating their lives and remembering the great Christmas’s of times past. I hope everyone finds a little corner of peace in grief which is personal and profound.

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Hello Jen8
I am so sorry for your loss and i feel your pain sending much love xxx

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Jen8 im so sorry for your loss.

Your totally right it was the worst warching the decline .
It all starts so innocently dont you think? A common cold which esculates to respiratory faliure…well thats what happened to mum 11 yrs ago.
She ended up in hdu for 27 days on a vent … since then it was a steady slow decline up until august this year…she went into hospital and came out a week later having been treated for right sided heart faliure due to copd.
Cor pulmonae…they say … but its heart faliure caused by copd.

Copd is cruel and unfair …

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15

It’s cruel. The gasping for air, terrified panic, physically impactive. Mum couldn’t expel her own CO2, but needed oxygen. How terrible it was for her to have to decide! It’s a slow death and the anticipatory grief went on for years for me and my sister as it did for you. They’re not suffering now, and my pain in grief is nothing compared to the slow decline and suffering I witnessed my mum going through.

Yes it’s awful isn’t it? Thinking of you also xxx

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16

Hi all. Felt I needed to share my story as it is so similar to what I am reading.

My mum passed away New Year’s Day 2020 at only 73 years old.

I remember having a holiday in Great Yarmouth, she had a cold and then was told she had pleurisy. I think she must have been around 45.

After that, over a number of years her breathing got worse and she needed steroids and antibiotics to fight numerous infections.

In 2012 she was hospitalised, she must have been around 65. After that she very gradually got worse with more period in hospital, when she was about 69 she started to get serious back pain, doctors put it down to osteoporosis, then she needed oxygen 20 hours a day which was not helped with her being a CO2 retainer so everything was fighting against the other.

It was awful to watch, knowing there was nothing I could do.

I knew stairs were a problem so we decided to look for a bungalow, intensional was mum and dad would move in with me. We eventually found and bought a bungalow. We all moved in together, things were good then three months after moving in, New Year’s Eve 2019, mum could not breath, called an ambulance, took them over an hour to get here, mum was taken to hospital, dad went in the ambulance, I followed. Got to the hospital, mum was not awake, couple of hours later she was gone. How can that happen so quickly.

We never really understood how poorly mum was, we sort of got used to it and just assumed, go in hospital, antibiotics and then back out. No one explained to us what was really happening.

I am 46, single. Luckily my dad is in good health. Lead up to Christmas is so hard. Your stories just made so much sense to me and I can so relate to them. It is so difficult.

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17

Hello Barrie,

I’m so sorry for your loss. No one tells you what will happen, what the exacerbations mean and how deadly they can be, no one tells you how cruel retaining is and how horrible it is to watch someone gasp for air.

Your story is terrible. I hope you find some respite in your grief through these pages as I have.

There was, as you say, nothing you could do. I’ll let you know how my ombudsman case goes.

Take care.

Jen

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my wife passed away 12th july this year, she battled for the last 5 years against heart failure and copd ,in and out of hospital at least twice a year with pneumonia , I’m not a doctor But Greatly believe the pandemic played a large part in shortening her life, she was house bound apart from hospital or doctor appointments for 3 years very little or no exercise so her breathing rapidly got worse, I spoke to a doctor who openly said to me they are gradually find out more and more about the affects on people with health problems during the pandemic But to a lot of us it’s to late,

steve xx

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Dear Steve,

So sorry fir your loss to this terrible disease.

The pandemic was so frightening for millions of vulnerable people. My mum was so frightened of getting covid we had to disinfect everything before seeing her.

The doctors only treat symptoms. There’s nothing proactive about lung disease cures. It is really about managing the condition but the community support is very limited.

Love and light to you xx

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