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Thread: My dad passed last week

  1. #1
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    My dad passed last week

    Iíve 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 wouldíve 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 wouldnít 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 canít accept that he was well and then due to their neglect Iíve now lost him after he endured so much with the mnd. Theyíve said he died due to respiratory failure caused by hospital acquired pneumonia and contributed to by mnd.

    I feel if heíd been treated appropriately re the mnd and infection heíd still be here today

    I donít 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 - Iím
    Devastated I didnít 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. Iím heartbroken and feel such guilt over not making it especially as the staff rang me and said heíd asked me to be there - I drove as quick as I safely could but heíd gone 😢

    I also canít 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 😢 Iíve 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 canít help but think this isnít 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 wouldíve fought forever for us to stay together.

    I feel guilty about not getting there before he passed, not being firmer with the hospital (but Iíd put in many complaints and PALS were already investigating and Iíd spoken to his doctors expressing my concerns over and over, I didnít know what else I could do) and it was all making me ill too.

    I also still wish Iíd have managed to do more even though my friends and family all keep telling me theyíve never known anyone care so much for a sick loved one as I did for my dad.

    I wish Iíd have realised how ill he was and that he was going to pass and I wouldnít have gone home - heíd had two respiratory episodes the day before he died and then seemed settled and Heíd had episodes of respiratory failure four times previously over the past 6 months that Iíd seen him survive. Heíd also beaten pneumonia a couple of months before. Iíd been with him for 12 hours and was exhausted & knowing heíd need me the following day I left the hospital at 11pm and then got a call at 4am saying he was seriously ill. Iím devastated I didnít stay 😢

    I really donít 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.

    Iíve spent three years constantly caring, dealing with therapists, Carers, social services, equipment suppliers, hospitals, doctors and more that I now donít even know who I was before all the upset.

    I feel I need to know for definite what happened to dad but Iím too upset to even speak to the hospital as I know in some way they wouldíve 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 heíd gone. I know previous times weíd asked for the cough assist it took the physio 3-5 hours to arrive to help him and I canít 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 couldnít cope with it by this point anyway.

    Any advice anyone has would be greatly appreciated.

  2. #2
    Forum Member Gillette's Avatar
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    Vicky, Iím so sorry for your loss. I can well understand the tumultuous feelings and emotions you are going through but I donít have any words that will help you to cope - I really wish I did.

    Do you have anyone you can talk to about how you are feeling?if you do, please contact them. If not, please ring the Samaritans on 116 123 or Cruse Bereavement Care on 0808 808 1677

    My best wishes to you, Vicky. Please take care of yourself.
    Dina

    Trying to keep positive, but not always managing.

  3. #3
    Forum Member Lynne K's Avatar
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    Vicky, very sorry for your loss. Please think on about talking to your own GP about how you feel. I hope that there's family or friends that you can reach out to. Also, there's usually PALS in hospitals to support patients and/or carers with issues. I don't know the specifics of their role.

    I wish that I could offer more suggestions but I wouldn't know what else to suggest. Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #4
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    So sorry for your loss Vicky x

  5. #5
    Forum Member Barry52's Avatar
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    Hello Vicky,

    Please accept my condolences for the loss of your dad. I understand the guilt you feel for not being present when he passed away because this happened to me with my dad. I do believe that they are conscious of our presence and are waiting for the right moment to save us the pain of watching them slip away.

    You know in your heart that you did everything possible to care for your parents and no one can ask for more. You rightly feel let down by the health services and because MND is a rare disease, most health professionals don’t know how to treat the symptoms.

    Please consider that ALS is terminal and whilst we want our loved ones to fight hard sometimes they have just had enough and give up the battle. I hope in time you can look back on the happier times and remember that you did everything to make your parents proud.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  6. #6
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    Hello Vicky, I am very sorry for your loss, especially as you were so close to your parents. I am very close to my parents;- they were my best friends throughout my life ;- they taught me and encouraged me to be independent but they were always there to support me when I had difficult times, even in my adult days. So I understand what it feels like to be close to your parents. My dad passed away a few years ago and my mum is in a care home. I am gutted that my MND is reducing the time I visit my mum and has stopped me taking her out which was so important to me , to give her some quality of life.
    In his latter days my dad had Parkinson's disease. He went into hospital with respiratory problems and it turned out he had pneumonia. But the hospital staff stated that he was under palliative care ( I.e that the pneumonia would kill him ) and they asked me and my mum and my sister for permission to avoid resuscitating him if he had respiratory failure. This was on the basis that if they did attempt to resuscitate him there was no guarantee he would survive but if he did his health and quality of life would be much much worse. He was in hospital for 2 weeks and passed away peacefully.
    So, I am just wondering if that is something to think about your dad , especially with his MND. I.e what would his quality of life been if he had survived in hospital. I know with my MND, sometimes I feel less afraid of dying than having to encounter its devastating disabilities.
    Anyway, don't beat yourself up. You should be proud of all the care you gave to your parents. I know how difficult it is to get it 100% right.
    Take care.

  7. #7
    Forum Member nunhead_man's Avatar
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    Good evening Vicky,

    Please accept my condolences for your loss - it must be devastating given the way in which you describe it.

    I'm afraid your story has pushed my buttons as I lost my father in the late 1970s as a result of being left on a trolley over one Saturday night when we kept on telling the staff that he did not only have a chest infection but was suffering from leukaemia but nobody did anything about it - he needed a respirator - and he died on his trolley in the absence of myself my younger brother and my mother.

    We were not called despite my mother asking for us to be contacted and my mother had been sent home on the basis that she shouldn't not be in hospital overnight but probably just to get her out of the way.

    We were furious of course and and took the complaint all the way through the good offices of our local MP to the Department of Health and eventually got an apology from hospital together with some significant changes in the members of the management team who apparently were already under threat.

    I am saddened that 30 years later as a relative you were still required to be telling the medical staff what to do.

    I would certainly make a formal complaint through the PALS system, not the least is this may help the next person comes along with MND.

    It may be some of the staff in the MND structure may be willing to take up the cudgels with the hospital about their lack of understanding of the disease
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  8. #8
    Dear Vicky,

    I am extremely sorry for your loss!!
    I send you all my strength and positive thoughts and wish you nothing but the best!!

    Reading your message, I am surprised to see how much can we relate to 'strangers' and people we've never met.

    My mum has been diagnosed with cancer 2x and overcame chemo & radiotherapy and when she got a bit better, my dad was diagnosed with MND (Summer 2018). He had huge difficulties breathing and eating towards the end of last year and lost a lot of weight so, in order to be able to get PEG, he's been admitted to hospital on 2nd January (I now hate the term 'Happy New Year') so they can feed him via nose tube and he can gain some strength.
    Hospital staff have been amazed over his great shape and care (no back pain, us lifting him so he can use bathroom, go out, sleep well etc.) - they even allowed one of us to stay with him from his 2nd day 24/7 since he didn't talk and couldn't call for a help or tell them what's wrong.

    We came over to visit him on the 2nd day but he wasn't in his room - he's been admitted to ER due to breathing difficulties and he could hardly catch a breath when we saw him for a minute. Doctor decided they will preform a tracheostomy as, due to his breathing and swallowing difficulties, he had a chest infection and this would open his breathing ways.

    I am sure the staff did what they could but I still cannot stop thinking about how is it possible that, when he was home, we came to him the second we heard he was coughing or choking and helped to make him feel better and the 1st night he spends in the hospital - he is suddenly not even able to breath and he needs a surgery. He must have been on his own, without a help, for a while... I cannot think of any other reason.

    He now has his PEG and breathing tube but he is still in ER as he has a pneumonia and taking antibiotics. Pharmacy refused to give us his new dose of Riluzole and hospital stopped the treatment given circumstances - is this a usual procedure?

    We now need to decide whether to send my dad to a hospice (if we find one with an available space) or home - but we would first need to find a 24/7 specialised care.

    Do you know of anyone with tracheostomy who is in a home care?

    We would love for my dad to come back home as he must be exhausted looking into ceiling for 3 weeks now with no familiar facies around (only us for 2 hours a day).

    My mum is very tired and visiting her specialists as she's feeling very bad and I am only praying she stays healthy!

    It is very difficult to decide what to do as we want the best for my dad but also for my mum and, even though I want to be with my dad as much as possible (but more I want for him to be able to enjoy his life a little), I also need my mum to stay healthy...

    I am very grateful for this forum and help it provides to patients and families and I wish the same assistance was available worldwide! My family doesn't live in the UK (only me - I fly home every month and spend around 10 days there and 20 here so I can keep my job and help when needed) and the things they had to experience are unbelievable and impossible to understand. Mainly because people don't understand this disease... That's why I want to raise an awareness and this forum is a great example!!

    Barbara

  9. #9
    Forum Member Ellie's Avatar
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    Hi Barbara,

    I am sorry about your dad’s predicament and know it must be so hard for you being in a different country to him.

    When you say “ER”, do you mean ICU, Intensive Care Unit? And I take it the trache is to stay in once dad’s pneumonia goes?

    Yes, people with traches can live at home but need trained people on hand 24/7 in case of a problem with the trache. It obviously depends on what usually happens with people living with a trache in his country - are his family expected to provide care or does the state/health insurance fund any home care etc. I guess these are questions you need to ask.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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