letting Dad go in peace

Discussion in 'ARCHIVE FORUM: Support discussions' started by Fozz, Jun 9, 2004.

  1. Fozz

    Fozz Registered User

    Mar 9, 2004
    16
    Ipswich
    Hi, I haven't put any posts on for ages, but have visited the site a lot. My Dad has died, not directly because of his dementia, but that was the reason my step mum and I decided against intervention when he was taken seriously ill. He had a perforated bowel, and although a major operation was an option, he had chronic lung disease and a weak heart and it would have been a great risk anyway. We both felt that had he not had dementia it might have been a risk worth taking, but he was so unhappy and had gone downhill so fast in the past few months that we wanted to let him go in peace and dignity.

    Even though the doctors and nurses supported us, and we had gone over this scenario in our minds before it happened it was an awful decision to have to make in reality. But we feel it was right, and that he has been set free from suffering and struggling.

    It was coming closer and closer to the moment when he would have had to go into permanent care, and we knew that he would
    have been terribly unhappy . We miss him terribly, but we want him back the way he used to be.
     
  2. Jenny M

    Jenny M Registered User

    Sep 15, 2003
    11
    Barnet
    Dear Fozz,
    So sorry to hear about your Dad. My Mum also died recently after a short but rapid decline into Alzheimers. She was only in residential care for five months but she seemed to have enough awareness to know that it wasn't where she wanted to be. It sounds as though you and your Mum had a tough decision to make, I know that I would have done the same, in your Dad's situation.

    Now that my Mum is no longer suffering, I can enjoy memories of happier times. I hope that you and your Mum will find this too.
    Best wishes
    Jenny
     
  3. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Hi Fozz

    So sad yet a relief? He was very lucky to have you there to make that decision for him. It's what we would want for ourselves in that situation isn't it? When my Dad went I know it gave Mum and me great comfort to know he was at last at peace and the torment was over for him.

    Take care - no doubt you've a few more hurdles to face but the strength you've already had to show will get you through

    Kriss
     
  4. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    #4 kate34, Jun 9, 2004
    Last edited: Jun 9, 2004
    now at peace

    My father died 3 weeks ago after several years suffering from Alzheimer's. Like the earlier message, I fully empathise with the decision not to perform 'heroics' on people whose quality of life is no longer present. No matter how good the care, it is cruel to allow them to suffer needlessly. We decided in Dad's last few weeks of life not to have active treatment and the Consultants at the hospital where Dad was treated recently for a chest infection and possible GI bleed wholeheartedly supported us and I know that Dad would have hated to go on any longer. He died quite peacefully at the nursing home, we got to say goodbye and I am glad its all over for him and for us and that he is at peace at last.
     
  5. Fozz

    Fozz Registered User

    Mar 9, 2004
    16
    Ipswich
    Thanks for your replies, they have helped enormously, because you have been in the same situation. I think it can be hard to understand for some people who have not had experience of dementia why you would choose to let someone close go, but you do it because you love them.

    We are now planning the funeral service and my stepmum wants it to be a celebration of everything that Dad was before the dementia took hold. He used to paint watercolours, and some of them will be put up in the church with some photos of when he was young. As Jenny said , we want to go back to happier times
    and remember Dad as he truly was.
     
  6. Dawn

    Dawn Registered User

    Jun 21, 2004
    2
    West Midlands
    It's helpful to read other people's experiences. My Mom has just been admitted to hospital with dehydration as she now refuses to eat or drink. My sister and I are trying to approach the subject of how much more suffering she can bear but also how we are going to discuss this with my Dad who we suspect is still more optimistic about what can be achieved by the medics. You're so right that it is difficult for anyone else to imagine how you go about 'letting someone go' but for me I just feel that without any quality of life (all Mom will say now is 'let me die') it becomes cruel to keep prolonging her suffering. We've got some big decisions to make so any advice would be very welcome.
     
  7. Beth

    Beth Registered User

    May 10, 2004
    5
    Bedfordshire
    New Member

    I have to say that I have found this message board to be extrememly helpful.

    My dad, who is 81 has recently been diagnosed with Alzheimers Disease and something called Binswenger's disease. Added to this he is also diabetic and up and up until a few weeks ago was injecting his own insulin.

    His behaviour was however, becoming extrememly erratic and sometimes quite violent. My mother struggled with him alone for sometime saying that he was just old and stubborn, before finally admitting that she could no longer cope.

    So far we have had quite good experiences with health care professionals. Dad was given a place at a day hospital (mental heath services for older persons) where he was taken each weekday for six weeks an assessed. They told us last week that the thought he would deteriorate rapidly and that the best option for him would be full time care. He is at present in hospital where his medication is being stabilised.

    On a personal note, I identify with a lot of the posts I've read, particularly about the cruelty of the disease. Dad and I were always really close and although he still recognises me and we can have a conversation of sorts (I'm not always sure what it's about!) I miss him very much.
     
  8. Fozz

    Fozz Registered User

    Mar 9, 2004
    16
    Ipswich
    Thanks for your comments Dawn and Beth. I suppose in our situation things were taken out of our hands a little by the severity of Dad's sudden illness, he would have died sooner had the hospital not put him onto life support. When the doctor came to see us he asked us what his quality of life was in view of his dementia, and we said that we felt that we had lost him already because he had gone downhill so far. The only option would have been emergency surgery which would have been extremely risky, and the doctor fully supported our decision for no intervention. We were lucky in that my stepmum and I both felt exactly the same that we wanted above everything else to save him further suffering. Had we differed in opinion it would have been difficult , as you mention Dawn that your Dad might want to go further with treatment than you would.

    I too missed talking to my Dad as he used to be, he always recognised all his family to the end of his life, but conversation was very limited. Today my step mum said that she has trouble remembering how he really was when he was well, because he has been slowly going downhill for 10 years mentally. I feel the same , my two daughters have only known him since his dementia first began, to them he has always been vague and forgetful - I would love them to have known his true self.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    You say "Today my step mum said that she has trouble remembering how he really was when he was well, because he has been slowly going downhill for 10 years mentally"

    Yes, that's the same for me with Jan. People have told me to remember her as she was, but I just can't now.

    I can't even remember her voice as it was, since it has dropped at least an octave over the past six years.

    I find that when I look at photographs I took of her twelve years ago seem to be of someone I just can't recognise as having known.
     
  10. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    So strange that we were talking about the same thing last night.

    We all find it hard to remember what Dad sounded like. Even his laugh. I try and remember certain things Dad did and I can even remember certain smells, but I can't remember Dad's face. When I see pictures of him and see him laughing, I can't believe it's the same person.

    One of his trademarks was winking and sticking his thumb up to say goodbye.. He still manages to do it occasionally and it brings tears to our eyes, but it's like he's mimicking someone else. It's not him anymore. It's so sad, I can't put it into words.
     
  11. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Since Dad went I keep having flashes of memories but now it has been mentioned I realise they are fairly recent images. Fortunately even the sad ones are beginning to make me smile. I know that sounds odd but I remember some of the daft things he would do towards the end and can often giggle about them.

    Its almost 18 months now and I guess I am beginning to heal.

    Kriss
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    It took me a while to come to terms with the loss of the memory of what Jan was like in the past.

    Then the light came on!

    The person in front of me is Jan and what is important is her life NOW and how I can make that best for her [and therefore me] NOW, not what was in the past.

    In reality, as Kriss says, we can enjoy [of only eventually] moments of humour or glimpses of the person we once knew so well, and learn to know them as they are now.

    For the time that I'm with her, it is her NOW that is our joint objective; once I leave, I need to try and put that aside and grow a new life for myself. For the first couple of years Jan was in care, I couldn't do that. Now I can, but not all the time!
     
  13. Dawn

    Dawn Registered User

    Jun 21, 2004
    2
    West Midlands
    I went to visit Mom yesterday and found her extremely frail and sleeping constantly - I really felt that her next breath could be her last. What a difference today! - she has drunk a little (for the first time in days) and we have sung together (Leaning on a Lamp-post!) and looked at a crossword. I have no idea what tomorrow will bring but I am so grateful for today - a little reminder of what Mom once was, as so many people have commented it can be difficult to remember so I'm trying hard to hold onto what I have got rather than waste my energies mourning what I can't bring back.
     
  14. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    I've been to visit my mum today, last week she looked so at peace, she had just had a bath, and looked bright and alert, today she looked frail and slept most of the time I was there, I fed her lunch to her and the smallest amount's made her cough or gag, I was saying come on now mum it's important to eat to keep your strength up. But at the end of the day my mum is unable to control what is happening to her , and eventually will lose the ability to swallow, I know myself then that there won't be much time left, my father has already made his wishes know. That when the time come's he doesn't want any intervention to prolong life, I myself don't want my mum to suffer any longer but when I visit and she look's a little like the "lovely mum " that used to be I leave the hospital a little less heavy hearted, selfish I know but I still cherish every moment I spend with her , and find it difficult to imagine life when she has gone. Even though deep down I know this will mean an end to this terrible existance for my lovely mum.
     
  15. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Rosie, you are so right when you say that they cannot control what is happening to them. It is important you do what you feel is right, but please don't allow your loved one to be left unfed, not drinking and just wasting slowly, this in itself is one of the biggest cruelties. Be there, find out what is going on and make sure all care is being given. Then, leave it in gods hands to decide when he has decorated a room for them.
    Love She.XX
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    "when he has decorated a room for them"

    I like it. Nice phrasing.

    Thanks.
     
  17. kate34

    kate34 Registered User

    Sep 23, 2003
    51
    #17 kate34, Jul 11, 2004
    Last edited: Jul 11, 2004
    letting go

    Like Brucie, I too like the expression 'when God has decorated a room for them'...though my faith has been severely tested of late. Its 8 weeks now since Dad died and although those awful images of how he looked have faded [still get a flash on low days] I know Mum can still see him in that way, i suppose that will heal in time, I keep telling her it will, and truly hope it does. It must be dreadful to see your husband or wife 'disappear' in such a way. I know what my Dad was like and that wasnt him at the end. I am glad he is at peace now.
     

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