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Saying Goodbye

Discussion in 'End of life care' started by Madge99, May 5, 2017.

  1. Madge99

    Madge99 Registered User

    Mar 29, 2014
    25
    I've been to see my Dad this afternoon. As soon as I got there I was collared by one of the carers, who told me that although Dad had eaten "a good lunch" today he has been refusing food for several days. I would have been more surprised if she had said he'd got out of bed and been dancing on the tables.
    In February when Dad was in hospital I never imagined he'd still be here now. I am going away on Monday for 10 weeks. It's bittersweet, supposed to be the holiday of a lifetime, but I am half prepared to be called home for his funeral.
    I told him this afternoon that I didn't want him to be around when I get home, but it was so hard to leave him. What I actually wanted to do was lie on the bed and give him a great big cuddle.
    Everyone is telling me (and I know it's true) that he'd want me to go away and have a wonderful time, but I know all the while he's in that room there's going to be a little bit of me sitting with him, waiting...
    I know all of you on here will understand x
     
  2. Rosnpton

    Rosnpton Registered User

    Mar 19, 2017
    390
    Northants
    What a horrid time for you.
    I know you won't be able to fully enjoy this special holiday,but your comment that dad would want you to go says a lot.
    Try and enjoy what you can,and treasure the memories of the better times.
    Thinking of you and sending hug
    Ros
     
  3. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,834
    Ireland
    That is so very difficult, Madge. Of course, your mind is going to be on your dad while you are away, and of course it's going to be very difficult to enjoy the trip while waiting and wondering.

    Could I make a suggestion, and feel to say "Stupid bl***dy woman!"? To try and get some enjoyment out of the trip, while still allowing and acknowledging your feelings about your dad some room (because they are not going to go away), how about writing a postcard to your dad at the end of every day, and keeping them? You could tell him about what you have seen that he would enjoy, and that you miss him, what you are doing, whatever is in your mind or your heart. Then try and put the postcards (or you could write to him in a diary) away until the following evening.
     
  4. Madge99

    Madge99 Registered User

    Mar 29, 2014
    25
    That's a really good idea. Thank you.
     
  5. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    468
    Lady A,

    What a breathtakingly lovely idea.
     
  6. Spamar

    Spamar Registered User

    Oct 5, 2013
    5,138
    Suffolk
    When my fil was near to end of life, we were due to go away, though only for a fortnight. OH talked to funeral director and minister, explained the situation and made the arrangements as far as possible. When we came home, everything was in place, except the date of the service.
    I see no reason why you couldn't do that, even though you'll be away longer. ( I know of another death where it was 8 weeks before the person was cremated, btw).
     
  7. Madge99

    Madge99 Registered User

    Mar 29, 2014
    25
    But we're going away Monday morning so it's a bit late now. Good suggestion though.
     
  8. mayankroy

    mayankroy Registered User

    May 9, 2017
    1
    #8 mayankroy, May 9, 2017
    Last edited: May 10, 2017
    Lady A, It was really a good approach. I agree with all your suggestions.
     
  9. Madge99

    Madge99 Registered User

    Mar 29, 2014
    25
    #9 Madge99, Aug 1, 2017
    Last edited: Aug 1, 2017
    an update

    I told the care home not to contact me unless "Dad's situation changes" but after nearly 3 weeks I was going mad with not knowing anything so I phoned them and was basically told there was no change. I rang every couple of weeks or so, and was told he has continued to deteriorate, some days he eats and drinks nothing, other days he will have a little.
    I took my OH with me to see him last week. He is literally just skin and bone now. He can barely move his head, not his arms or legs, which he could before we went away. I've said it so many times before, but I really don't know how he is still alive. He is receiving palliative care.
    I have had sciatica for several months and went to see an osteopath yesterday for the first time. She took a brief medical history, asking if my parents were still alive (my Mum died 2 years ago) and I told her about my Dad. I couldn't help myself, I cried. She said there is a lot of tension in my body, maybe caused by the stress of this situation. She said I need to try and relax more (lol!) "because your Dad wouldn't want you making yourself ill over him"
    I feel like the flood gates have opened. I keep crying. I know he wouldn't want me making myself ill, so why is he hanging on so long? I really can't bear this any more. I know it's not his fault, but I do feel angry with him. It's so hard dealing with this for such a long time. My father in law was unconscious for 6 days before he died of cancer. My Dad has been unresponsive for almost 6 months now. It's unbelievable.
    I just needed to get this off my chest.
     
  10. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    4,582
    Yorkshire
    hello Madge99
    what a heartbreaking situation
    your osteopath sounds caring and understanding - I bet they have a lot of people reacting with them in ways they have not been able to with others, simply because of the work they do
    it's so sad, isn't it, that a body seems to want so much to live, yet the spirit may be ready to fly
    I hope your dad relaxes into peace
    and that you find some peace for yourself
    best wishes
     
  11. 100 miles

    100 miles Registered User

    Apr 16, 2015
    97
    Madge,

    It is very hard watching a parent fade away.

    Going back to your first post where you said you just want to climb on his bed and give him a big hug.... is that possible? It may give you both some comfort. If not, just stroke his hand.

    best wishes

    100 miles
     
  12. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    985
    England
    #12 lemonjuice, Aug 1, 2017
    Last edited: Aug 2, 2017
    My situation is similar. My mothere has been 'unresponsive' for longer than that and even the NH agree there is little to say other than, "She is still breathing and doesn't appear to be in any pain."

    We've been away several times over the past 2 years and I've just left instructions for which Funeral Home to contact for removal of the body, should she 'go'whilst we're away.
    The NH know to contact my sons to clear her room and then we just go.

    Over the past 5 years I've said my 'final goodbye' so often I no longer feel the need to be there at the end. I lost her years ago and just wait for her phsical body to catch up.

    Her funeral flyer is all prepared and just needs to press 'Print' and organize a day. 5 years ago I was told it would be very surprising if she were still here in 5 years time. Then 2 years ago she was seriously ill with 'just-in'case' meds prescribed and no-one expected her to last and definitely not be still here in 12 months, let alone 2 and a half years later.

    Just go and enjoy the holiday. Good suggestions from Lady A.
     
  13. Madge99

    Madge99 Registered User

    Mar 29, 2014
    25
    5 years! OMG I don't think I could stand it for that long :eek: I really feel for you x
     
  14. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    985
    England
    #14 lemonjuice, Aug 2, 2017
    Last edited: Aug 2, 2017
    I must admit I could scream sometimes. I sometimes think it would have been better had she not survived that emergency 5 years ago, as her QoL wasn't good before, but has deteriorated to zero since. I only cope because I effectively think of her as 'dead'. I have had no response or heard her voice for too many years now. I visit the NH just to let them know I am on 'Mum's side', but the visits make no difference to her. Usually she doesn't even seem to be aware there is anyone in the room, despite my stroking her face and holding her hand etc. She shows no response at all. It truly is a 'living death'.

    When she was diagnosed 7 years ago I could not believe she could survive this long, but in effect everything which could have killed her, she has survived and it is just a matter of waiting for the last few brain cells remaining, which 'remember how to breathe', to fail. There are no other functions. Even the need to swallow has been bypassed by the liquid food they've been feeding her for the past few years, which just goes down with gravity, requiring no swallowing.
     
  15. Madge99

    Madge99 Registered User

    Mar 29, 2014
    25
    Said Goodbye

    I had a call from the nursing home early on Sunday morning saying they thought Dad maybe had 24 hours left. I went over and sat with him a while, just the two of us. Phoned my husband (who was at work) at lunchtime and he came and joined me. Dad's breathing was shallow, his pulse was weak and they said he hadn't had any liquids for 48 hours.
    We went home in the evening, leaving instructions to call me any time.
    Today we had arranged, a long time ago, to go out with friends, so we sat with Dad for half an hour this morning, planning on going back later. If I hadn't sat with him all day yesterday I would have stayed but...
    At lunchtime I got the call to say he had gone.
    Last night I was dreading that he was going to take ages to pass.
    I'm sad but relieved.
    So thankful for everyone who has responded to my posts on this forum. It's so awful to watch someone die from this dreadful disease.
    Hugs to everyone still suffering
    xxxx
     
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    53,184
    Dundee
    I'm so sorry to read your news. I'm glad your dad is at peace now.
     
  17. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    8,402
    Merseyside
    I'm so sorry. My thoughts are with you.
     
  18. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,834
    Ireland
    So sorry for your loss, Madge. It's very hard, no matter how much we are expecting it.
     
  19. Soobee

    Soobee Volunteer Host

    Aug 22, 2009
    2,398
    South
    Thinking of you at this very sad time.
     
  20. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    227
    Im so so sorry but you dad is at peace now xxx
     

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