I’ve been caring for my parents as an only child for the past 3 years when both were very poorly. Lost my mum in May 2018 to cancer and dad last week, 21st December to pneumonia and mnd (I think).
I was incredibly close to my parents, they were my life and I cared for them both intensively and would’ve done so for many years to come to have them with me.
Dad was diagnosed with MND in 2018 and for the past 4-5 months had been in & out of hospital with chest infections and UTIs. It had been very stressful, dad had lost use of all limbs and had an NIV for overnight but breathing during the day seemed fine and still had speech and ability to eat etc.
Main source of stress was that he kept ending up in our local hospital and they had no idea how to care for anyone with mnd and I spent time constantly chasing and asking for cough assist to be done regularly and antibiotics to be given promptly along with oxygen etc when I knew a chest infection/pneumonia was evidently starting up again.
My dad was in hospital for three weeks before Xmas having been well for this time and fit to come home - he was only waiting for a day sitter to be put in place before social services would let him come home.
Sadly last Monday my dad started coughing up phlegm and had a temperature - after being called to the hospital as though it was an emergency I found him on his own, without his NIV on yet struggling to breathe and the ongoing hospital saga continued - staff wouldn’t listen when I was telling them how serious it could get for him with mnd - they waited three days until the pneumonia became serious having built up and then several failures re delayed antibiotics, missed medication, oxygen not turned on and no cough assist help etc sadly meant I lost my dad in the early hours of the 21st December.
I understand with MND and I expect my dad had the ALS form that it can affect breathing etc and I could see my dad was getting weaker and weaker but I can’t accept that he was well and then due to their neglect I’ve now lost him after he endured so much with the mnd. They’ve said he died due to respiratory failure caused by hospital acquired pneumonia and contributed to by mnd.
I feel if he’d been treated appropriately re the mnd and infection he’d still be here today
I don’t know how to get past this anger?
I had also been called to the hospital around 4 times as an emergency that week and got there in time every time - until the most important time and I arrived about 5 mins after my dad passed - I’m
Devastated I didn’t make it as I was by his side constantly apart from then and dedicated my life for the last three years especially to looking after him. I’m heartbroken and feel such guilt over not making it especially as the staff rang me and said he’d asked me to be there - I drove as quick as I safely could but he’d gone 😢
I also can’t get passed that he was well enough for two weeks and because social services and the care company took so long he caught pneumonia in there and died 😢 I’ve lost precious time with my dad that we were both still meant to have despite the mnd.
The hospital had him in over the past few months with infections and either discharged him without antibiotics or say with a 3 day course - I can’t help but think this isn’t sufficient for someone with mnd to clear up any infection.
It felt like the health service just gave up on my dad yet he & I would’ve fought forever for us to stay together.
I feel guilty about not getting there before he passed, not being firmer with the hospital (but I’d put in many complaints and PALS were already investigating and I’d spoken to his doctors expressing my concerns over and over, I didn’t know what else I could do) and it was all making me ill too.
I also still wish I’d have managed to do more even though my friends and family all keep telling me they’ve never known anyone care so much for a sick loved one as I did for my dad.
I wish I’d have realised how ill he was and that he was going to pass and I wouldn’t have gone home - he’d had two respiratory episodes the day before he died and then seemed settled and He’d had episodes of respiratory failure four times previously over the past 6 months that I’d seen him survive. He’d also beaten pneumonia a couple of months before. I’d been with him for 12 hours and was exhausted & knowing he’d need me the following day I left the hospital at 11pm and then got a call at 4am saying he was seriously ill. I’m devastated I didn’t stay 😢
I really don’t know how to cope with the grief of now being an orphan at 33 and my life as a carer for both parents for three years now being vastly different. I miss them both terribly and feel lost and empty.
I’ve spent three years constantly caring, dealing with therapists, Carers, social services, equipment suppliers, hospitals, doctors and more that I now don’t even know who I was before all the upset.
I feel I need to know for definite what happened to dad but I’m too upset to even speak to the hospital as I know in some way they would’ve failed him. All they told me was my dad said he felt unwell with his chest and had asked for the cough assist - physio arrived and he’d gone. I know previous times we’d asked for the cough assist it took the physio 3-5 hours to arrive to help him and I can’t help but worry the same thing happened again. Although the cough assist had caused him respiratory difficulty twice the day before he died so it could be that his lungs couldn’t cope with it by this point anyway.
Any advice anyone has would be greatly appreciated.
I was incredibly close to my parents, they were my life and I cared for them both intensively and would’ve done so for many years to come to have them with me.
Dad was diagnosed with MND in 2018 and for the past 4-5 months had been in & out of hospital with chest infections and UTIs. It had been very stressful, dad had lost use of all limbs and had an NIV for overnight but breathing during the day seemed fine and still had speech and ability to eat etc.
Main source of stress was that he kept ending up in our local hospital and they had no idea how to care for anyone with mnd and I spent time constantly chasing and asking for cough assist to be done regularly and antibiotics to be given promptly along with oxygen etc when I knew a chest infection/pneumonia was evidently starting up again.
My dad was in hospital for three weeks before Xmas having been well for this time and fit to come home - he was only waiting for a day sitter to be put in place before social services would let him come home.
Sadly last Monday my dad started coughing up phlegm and had a temperature - after being called to the hospital as though it was an emergency I found him on his own, without his NIV on yet struggling to breathe and the ongoing hospital saga continued - staff wouldn’t listen when I was telling them how serious it could get for him with mnd - they waited three days until the pneumonia became serious having built up and then several failures re delayed antibiotics, missed medication, oxygen not turned on and no cough assist help etc sadly meant I lost my dad in the early hours of the 21st December.
I understand with MND and I expect my dad had the ALS form that it can affect breathing etc and I could see my dad was getting weaker and weaker but I can’t accept that he was well and then due to their neglect I’ve now lost him after he endured so much with the mnd. They’ve said he died due to respiratory failure caused by hospital acquired pneumonia and contributed to by mnd.
I feel if he’d been treated appropriately re the mnd and infection he’d still be here today
I don’t know how to get past this anger?
I had also been called to the hospital around 4 times as an emergency that week and got there in time every time - until the most important time and I arrived about 5 mins after my dad passed - I’m
Devastated I didn’t make it as I was by his side constantly apart from then and dedicated my life for the last three years especially to looking after him. I’m heartbroken and feel such guilt over not making it especially as the staff rang me and said he’d asked me to be there - I drove as quick as I safely could but he’d gone 😢
I also can’t get passed that he was well enough for two weeks and because social services and the care company took so long he caught pneumonia in there and died 😢 I’ve lost precious time with my dad that we were both still meant to have despite the mnd.
The hospital had him in over the past few months with infections and either discharged him without antibiotics or say with a 3 day course - I can’t help but think this isn’t sufficient for someone with mnd to clear up any infection.
It felt like the health service just gave up on my dad yet he & I would’ve fought forever for us to stay together.
I feel guilty about not getting there before he passed, not being firmer with the hospital (but I’d put in many complaints and PALS were already investigating and I’d spoken to his doctors expressing my concerns over and over, I didn’t know what else I could do) and it was all making me ill too.
I also still wish I’d have managed to do more even though my friends and family all keep telling me they’ve never known anyone care so much for a sick loved one as I did for my dad.
I wish I’d have realised how ill he was and that he was going to pass and I wouldn’t have gone home - he’d had two respiratory episodes the day before he died and then seemed settled and He’d had episodes of respiratory failure four times previously over the past 6 months that I’d seen him survive. He’d also beaten pneumonia a couple of months before. I’d been with him for 12 hours and was exhausted & knowing he’d need me the following day I left the hospital at 11pm and then got a call at 4am saying he was seriously ill. I’m devastated I didn’t stay 😢
I really don’t know how to cope with the grief of now being an orphan at 33 and my life as a carer for both parents for three years now being vastly different. I miss them both terribly and feel lost and empty.
I’ve spent three years constantly caring, dealing with therapists, Carers, social services, equipment suppliers, hospitals, doctors and more that I now don’t even know who I was before all the upset.
I feel I need to know for definite what happened to dad but I’m too upset to even speak to the hospital as I know in some way they would’ve failed him. All they told me was my dad said he felt unwell with his chest and had asked for the cough assist - physio arrived and he’d gone. I know previous times we’d asked for the cough assist it took the physio 3-5 hours to arrive to help him and I can’t help but worry the same thing happened again. Although the cough assist had caused him respiratory difficulty twice the day before he died so it could be that his lungs couldn’t cope with it by this point anyway.
Any advice anyone has would be greatly appreciated.
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