1. Fifon

    Fifon Registered User

    Aug 8, 2015
    23
    My beloved husband died just over 4 weeks ago in a nursing home. He developed pneumonia out of the blue and I had to make the decision whether to admit him to hospital for treatment or not. He exhibited challenging behaviour when having personal care and I didn't want to put him through the ordeal of drips etc so decided h should just be kept comfortable. It was the hardest decision I have ever had to make and I am constantly confronted by I it in my mind, even though his (new) GP said that is what he would have done if it had been his relative. Although he was having difficulty breathing he was asleep and the nurses injected him to keep him comfortable. I wasn't with him when he. actually died as I had gone home to 'rest' another thing that adds to my feelings that I didn't do all I could for him. As a Christian I know he is now in a better place but will these feelings of having betrayed him ever go? He had been in hospital under section before going to the nursing home and my daughter and I had made a DNR decision there, so I know that she supported me and everyone says that the right decision was made, it was his interests I had at heart etc etc but none of this seems to help.
     
  2. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,402
    My husband died five weeks ago at home and i faced the same decision. It was his frequently expressed wish over a long period of time not to be admitted to hospital for any reason.
    At the start of this year i was told he w as shutting down. Then one morning he woke up in terrible pain. We started him on antibiotica and paracetamol but he quickly got to the point where it was impossible to give him anything orally because of swallowing problems.he was put on a syringe driver to control the pain. He rallied bfiefly but within four days he was gone.
    I too feel guilty, if he hadnt been on the driver might he have rallied again. Oof he had been admitted could he have recovered? But we do the best we can . I too had the support of eveyone including his daughter but it doesnt make the guilt go away. I know it was the only decision i could make in view of his wishes but it doesnt make it any easier to live with.
    Hopefully in time the guilt will fade and peace will take its place.
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,908
    Female
    Scotland
    There is only one way to look at this. Stand outside of yourself and give advice to the person who was you. You know you did the correct thing and if you consider the alternatives they are not good and not kind. This is not an illness with some miracle cure - it is constantly getting worse whether fast or slow.

    To waste the rest of your life feeling guilty would indeed be a tragedy. Mourn, miss and move on.
     
  4. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,545
    Ireland
    Hi Fifon. It's a year since I faced this with my husband. He was taken to hospital from the nursing home at the end of May/beginning of June with pneumonia, kept a week - which was just horrendous for him - sent back to the nursing home to be kept comfortable, and died at the beginning of August. Comfortable, safe and happy, in his own bed. The only reason he was sent to the hospital was that that particular night, a friend had started texting me about something trivial in the middle of the night - so I had turned my phone off. Well - the nursing home had never had to phone me before. When I turned the phone back on in the morning, it rang immediately. By then, the Home had had to make the decision - and had sent him to the hospital, which was just across the road from them. I left immediately for the hospital, but it was rush hour and a journey that normally takes me 15/20 minutes took 45, by which time the hospital had been trying to phone me to know if I was nearly there. I explained about being stuck in rush hour traffic. So they had to make a decision in my absence - and by the time I got there, had resuscitated him. (He'd never been admitted before, so there wasn't a DNR on his file). William's swallowing reflex was so poor, he was aspirating particles of food & liquid. Even saliva. There really was nothing they could do - he couldn't swallow even pureed food. So I told the nursing home to just keep him comfortable - no subcutaneous fluids - and let nature take its course. The GP agreed.

    Medical science could possibly have kept William alive for another few weeks - they could have tried peg or tube feeding (although he would probably have pulled them out, causing more infections). IV fluids would have prolonged his life another short while. But to what purpose? And discussing these things with the doctors, Fifon, I said to them that there comes a point when you have to ask yourself why are you doing these things? In whose interests? Is it for the person you are doing it to - or is it for yourself, because you don't want to let go? And are you prolonging their life, or are you prolonging their death? I felt that in intervening in any way, I would be just prolonging William's death. He was ready to go. Why should I hang on to him here, to prolong his suffering with tubes and needles and zero quality of life? Best let him go with some dignity. As you have done for your husband. And as bemused did for hers - and countless others have done. It is a very tough decision to make. One nobody wants to make for someone else. But it was the right, the loving decision to make.

    I wasn't with William either when he died. I had gone home to rest, as the Nurse had said there was no knowing how long he would last - anywhere from three or four, up to seven or eight days. That Sunday afternoon, we had watched a film together - well, he had slept through most of it, holding my hand. Every now and then, he would open his eyes and smile at me. When I left that night, I told him I was going and said "see you later." and he smiled and said "Yeah." He died very early next morning. Two of the Care Assistants - who he loved - were with him.

    "Love endures all things" (1Cor. 13) - this is just something else that your love for your husband has given you to "endure" - the tough decisions, that break our own hearts, but made in the best interests of those we love. xx
     
  5. sunray

    sunray Registered User

    Sep 21, 2008
    1,429
    Female
    East Coast of Australia
    I agree, you did the kindest thing, did not prolong his suffering. My husband Ray died in the nursing home, I refused permission to send my husband with pneumonia to hospital as the last time he had gone they had neglected him, in my opinion. The pain killers were increased and the end was inevitable and he died peacefully in the bed he had been in for the last few weeks of his life.

    I did not see him die. I had only just reached home having gone home to have a shower, when he died, hours before he was expected to. One of the nurses said she thought people often waited till loved ones had gone to die, maybe to save them the pain of seeing their loved one take their last breath. I found that comforting.
     
  6. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I am so sorry for your loss Fifon, but you did the kindness thing possible. But of course, guilt will be at the forefront of your mind for the moment, and though people are telling you that you did the right thing, you're going through the turmoil of wondering if you did.

    Hopefully, this will start to fade soon, and you'll accept that any other course of action would not have been beneficial to your husband. John was only in a Care Home for a few months, and, to begin with, I berated myself for not keeping him at home, when he might have lived for longer.

    But what sort of life did he have? It wasn't life as he knew it. Slowly, the guilt faded, and though I still have moments, they're fewer and father between now. I wish you peace xxx
     
  7. Fifon

    Fifon Registered User

    Aug 8, 2015
    23
    Thankyou

    My heartfelt thanks to those of you who have replied to my post. I know intellectually that what you say is right and that my decision was right too, but somehow that emotional response manages to push its way in and take pride of place. I don't know if in fact anyone was with Frank when he died, I haven't had the courage to ask as I know that if he had been alone thus would make things even harder. I too wonder if I should have put up a fight when he was sectioned and admitted to hospital as he did go downhill so very quickly but this I shall never, and I accept can never, know. Meanwhile thanks for your encouragement, onwards and upwards as they say. Tomorrow is another day.
     
  8. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    A wise friend once told me to be my own best friend. If your best friend told you this story, what would you say to her? You deserve the same. A lifetime of love matters so much more than the last few moments of life. I also believe people choose how to go sometimes. My dad waited until his children left the room. I hope you can start to remember your husband before dementia. Your love is so evident and should cancel any feelings of guilt. Love Quilty
     
  9. Fifon

    Fifon Registered User

    Aug 8, 2015
    23
    Having read the thoughts and comments of others I have tried to think positively and put the bad thoughts out of my mind. To some extent I have been able to do so, probably helped by the fact that my dear daughter invited me to go with them on holiday, which I am currently enjoying. The fact remains that sometimes a little thing will jolt my mind and I will once again re-live the hard times. I don't know how long this will continue and sometimes when it happens while I am asleep and wakes me up, I despair that I will ever feel normal and happy again. I realise it is still early days, I shouldn't try to run before I can walk etc but time is passing by rapidly. My family, lovely though they are, seem to be expecting me to be 'normal' again and I am afraid to let my friends know when I feel low as they might already be fed up hearing me say how sad I feel at times. In the past my identity was so tied up as being 'Frank's wife' that being just me, and a widow to boot is proving more difficult than I imagined. The saying "Laugh and the world laughs with you, cry and you cry alone" keeps popping into my head. When will I ever be myself again is a question that just seems too difficult to answer. And here I am again, worrying about things when I should be getting on with life. I never thought I would see the day when I could just look at the dust on things and not feel able to wield a duster, or not feel hungry enough to take the time to prepare food. Guess all these things will eventually right themselves and until then I just have to learn to forgive myself. I am trying!
     
  10. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,545
    Ireland
    Fifon, you are grieving, and will be for a long time. And you are perfectly entitled to grieve. In years gone by, when a member of the family died, close relatives wore solid black, deep mourning clothes for at least one year following the death. They didn't socialise, and were not expected to be "themselves " - the mourning clothes were a visible reminder to all who saw them that the person was grieving, and so they were given the space and time and support to grieve. Unfortunately, our fast paced, instant gratification society moves on so quickly - but grieving will not be hurried. You will not be over your loss quickly.

    Don't worry about housework and dusting - or not dusting. It's what my friend calls "the apathy of grief " and in time, it won't be a constant thing. It will be still there some days, but not all the time. xx
     
  11. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    My husband had had a series of urine infections, he had been into hospital for a couple of days several times and each time he had responded to treatment. The care home staff thought the same thing was happening and advised that he should go into hospital and I agreed expecting that he would respond but this time he didn't, he got weaker and weaker and nothing they gave him made any difference. By the time they decided there was nothing else they could do he was so weak and thin that there was no way he could have been moved and so he died in hospital. Thankfully he was in a side room but had I known what the final outcome was to be I would have asked them to keep him comfortable in the care home.

    The decision not to give any further treatment was very hard but I had to ask myself if I would want my life prolonged if my quality of life had deteriorated so much and my answer, and I know it would have been my husband's too, was a resounding no.

    Fifon you did the kindest thing, and I'm so sorry for your loss and the feelings you have but you did make the right decision and you need to let yourself grieve even if it does mean the chores get ignored for a while. YOU are the important thing to concentrate on for the moment not the guilt monster. xxxxx


    Sent from my iPad using Talking Point
     
  12. Fifon

    Fifon Registered User

    Aug 8, 2015
    23
    Thanks for your thoughts it's helpful to feel one is not alone even if it feels like it.
     
  13. Fifon

    Fifon Registered User

    Aug 8, 2015
    23
    You are right to call guilt a monster and even though I have a strong faith still this comes to worry and upset me. It helps to have your affirmation though, thankyou
     
  14. Tara62

    Tara62 Registered User

    I am sorry for your loss, Fifon. Four weeks is no time at all. I hope that when more time has passed, you will truly believe that you did the right thing - which you did.
     
  15. Fifon

    Fifon Registered User

    Aug 8, 2015
    23
    Well I'm back from a lovely break with my family which I appreciated so much. At first when I got home there were things to do but now I feel the emptiness of the house so much more than I did before I went away. However, my appetite has come back to some extent and I actually enjoyed recreating a restaurant meal I had while away. Have just shed a few tears, the first for quite a while, and feel a bit better for it. A friend today said what helped her cope with the loss of a very close companion was to keep busy, and to give herself a treat each day, like going out for coffee or visiting a friend. Sounds good to me though I admit to finding it difficult to initiate contact with people in case they don't want to respond. Will try it though. It's been helpful to receive the support from members of this forum, but I guess we all share the same sort of experiences and so understand what others are going through. Thanks to all of you who have taken the time to write.
     
  16. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I'd definitely advocate keeping busy but - you also need space to grieve. It's so hard in the first few days, weeks, months to accept the reality of the situation that you now find yourself in. Regarding making contact with people, and dreading a rebuff, why not do this via text or email?

    Something along the lines of "have now returned from a lovely holiday with XXX, and would love to see you for a coffee, whenever you have some free time", and that way, if they don't respond, at least you know where you stand.

    TP is wonderful regarding support, and I couldn't have managed without it, and still can't. It's my rock, my prop, and a good friend. :)
     
  17. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,158
    Toronto, Canada
    Fifon, it is still very early days for you. Give yourself time and push those guilty thoughts away.

    Had there been massive medical intervention, I feel it would have been a twilight sort of life and only for perhaps a few days or weeks longer.

    You have nothing to forgive yourself for.
     
  18. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    Would joining a support organisation like Cruse (for the bereaved) help at all, please? As far as I can gather, the aim is to provide whatever support individual members want, when they want it, and in whatever form they want it (eg shared coffee sessions, someone to 'phone, etc). It might serve as an extra resource, one where everyone will understand how bereavement feels because they're going through it.

    I don't know whether Cruse is still the correct name ... but some such organisation will still be there because it's needed.
     
  19. Fifon

    Fifon Registered User

    Aug 8, 2015
    23
    Thanks for your comments, which are helpful as usual. I do get impatient with myself and just want the grieving season to be over. I will look into Cruse, thanks for the suggestion.
     
  20. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,993
    Suffolk
    As others have said, four weeks is no time at all, barely time to draw breath so to speak.
    My OH died a year ago in similar circumstances. He went into a home for respite. He had had a quick succession of falls and Tia's. Unfortunately, I promptly got a tummy upset, so his time in the home was stretched another week. Then he got a chest infection. At this stage I completed the paper work for dnr, he had gone downhill so much in the previous weeks, and the gps were from a different practice.
    It soon became obvious that he wouldn't come home again. He the deteriorated again and was put on bed rest. Two days later the on call doc arrived and gave him hours/days to live. I called his children and my step dau came up to stay with me. We decided to go home in the evening as neither of us had eaten and we didn't know how long the vigil might be. He died in the early hours of the morning, 15 hours after the doc had seen him.
    Ive never regretted not being there for him, there are many stories about people waiting until they are alone before they die. It's happened, all the regret in the world won't change that. I am thankful that his death was peaceful. No pain, not then, not ever again. No mixed up mind ever again.
    I want to remember him as the gentleman - in both senses - that he was. To that end I put up loads of pix of him in his better days and they are still helping.

    Grief is a bit like dementia - if you've seen one person's grief, you've seen one persons grief. Don't let anybody say you should be doing this or that, it's your grief! Do what's best for you!
    It will come and bite you when you don't expect it, but you will recover from it.

    Good luck!
     

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