1. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,542
    Yes @AliceA I watched it last night and I was particularly struck by the doctor who said 'we must stop wasting patients time' as that sentence rang true to me. My dad has been on palliative care for nine months now for his oesophageal cancer. He has been very well and pain free. He has had a couple of stents fitted so that he can eat and he eats well. No chemo, no radiotherapy. It was the best decision his oncologist could have made. He is happy and has far exceeded the time we expected him to have. She said they could not cure him and treatment would probably make him ill. At his last appointment she said that he was the perfect advert for non aggressive treatment for the elderly. I am thankful to her as it could have been so much worse.

    Sadly dad is now in hospital recovering from pneumonia which seems to have advanced his dementia and it is possible that he may not be able to return home but I am very glad that he has had the last nine ,months of being happy and well.
     
  2. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    244
    Central Scotland
    Having read the entire Scottish Government policies and the local Joint Integration of Health and Social Care Board's minutes and papers. I was most struck by the section on Carers, which classifies them and their needs into 3 categories - 0 to 19 hours per week; 20 to 34 HPW; 35+ HPW. My complaint is that there is a vast difference between 35 HPW and 168 HPW which is the number of hours that a full time, round the clock carer is either hands on caring or on call.

    I have written direct to the various bodies involved and spoken directly to 2 members of the board whom I know personally. They have come back to me asking for further information and having understood my point, have promised to raise my concerns at a higher level. It is not much but all accomplished without leaving my house. Something perhaps that we could all do from home to ensure that the voice of those of us who cannot attend consultations and meetings IS heard at the highest, decision making, level.
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,402
    My mother had oesophageal cancer, she was given palliative care rather than aggressive. She did get blood transfusions and stents. We made the last year as happy as possible. My father died within the year of her death.
    I myself have had radio therapy on the oesophagus, I have ongoing tests and treatments. My main concern is that I am able for my husband.
    My attitude to death is helped because I have lived with a life threatening condition for most of my life.
    I believe in death being a continuum, my experiences as a child showed that.
    I think the emphasis of the film was also about 'unfinished business'.
    It really is important that whatever out beliefs that we keep that in mind whatever our age.
    There was a programme about people's lasts words, whether old, young, rich or poor, the words were about love.
    Grief is overwhelming however we prepare, it is hard to lose the people we love.
    I hope your Dad recovers, I was told that my husband wouldn't recover to where he was before, but he did there is always hope. Xxx
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    2,402
    I drip away when I can and where I can, if enough of us do it the dam could burst. X
     
  5. Dutchman

    Dutchman Registered User

    May 26, 2017
    355
    Male
    Devon
    Hi Kindred and I hope all you wonderful people. Can I reply to several at once here? What’s the technique? Anyway, I need advice please as I just don’t know what to do. Again tonight OH goes to bed with her tights on. No change of underwear so no washing of private parts again. No amount of explaining does any good. I’ll need a pair of scissors if this goes on. How can I get the tights off and a wash done. It’s funny cos she goes to the dentist ok compliantly but simple washing is not appreciated. Help.
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,194
    Great to hear from you. Just say you are replying to us all, like you just did, Peter! This is a tough one. I do not know why this resistance to washing develops. I used to use baby wipes and tell OH I needed to give him a quick rub round ... and wash his nether parts like that. A full wash would not have been possible. And I used to give him a LOT of quick rub rounds. Is this at all possible for you? with warmest wishes, sympathy, oh believe me, sympathy! Kindred.
     
  7. Dutchman

    Dutchman Registered User

    May 26, 2017
    355
    Male
    Devon
    i really didn’t want to do this but I don’t where else to go. I just feel I need to talk to people who understand. I’ve never felt so alone as now and I’m here downstairs crying because of all that I’ve lost. My wife used to comfort me but that’s not understood anymore. We used to share everything now she’s had episodes where she doesn’t know me. I know it irrational but I want my wife back and I know I can’t. Unlike a disease or illness there’s a chance that things will get better but it’s all downhill with no hope of recovery when it’s dementia. In the past bad times have got better, we’ve managed together, we’ve worked it out. It’s been about 5 years since symptoms first started to appear. Now I don’t feel there’s any way out. Not that I feel like suicide but I understand how it can get that far and how people can be in clinical depression. I never appreciated this before. My darkest, deepest hope is that instead of drifting away over the next few years she passes away suddenly for my sake as well as hers. Everyone says I’m doing well, am I? I don’t know. They mean well but they leave back to their normal lives. We’re left in the black hole of dementia. I know there’s nothing anyone can do to lessen this misery but just getting it off my chest, just being open has helped. Thanks for listening.
     
  8. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    130
    Hello Dutchman,
    I am sure I speak for everyone on TP, we all understand how you feel and you are grieving for your wife, yourself and the life you had. You have been wonderful with your wife and five years is a long time to care on your own.
    Please get help, go to Social Services as soon as possible and tell them you are suffering from carer burnout and you need some respite for both you..
    Please keep posting, we are here for each other.
    Thinking of you dear Dutchman.
    Kathy x
     
  9. kindred

    kindred Registered User

    Apr 8, 2018
    2,194
    As Kathy says, we are here for each other and I am so glad to talk to you. Well, you know I understand completely, Peter. I'm not sure what doing well means either, not when people can walk away. I only really coped with the last couple of years looking after my OH alone by knowing I could end it all for me if I got that far. The idea of a suicide was a comfort. But I could never work out how to do it so Keith would be found and looked after quickly!!
    I wish I could be with you and talk to you and help.
    with love, Kindred, aka Geraldine,
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    Sending my support too.
    People who say that you are doing well generally have no idea what it is like late at night and first thing in the morning. Nights are worst, when everything crowds into your mind and you are so tired, but cant sleep.

    I echo the advice of the others - you need some respite. I know that your wife wont be happy with this, but if you burn out and are not there to look after her she would have to move to a care home anyway. I would also go and see your GP to see if antidepressants might help.
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    2,402
    Sometimes it is hard to admit we need help but when we ask it helps to spread the word that all Carers need more help and understanding.
    You really do need to look after yourself, as we all do to help keep looking after those we love. X
     
  12. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    468
    Female
    Basingstoke, Hampshire
    I see it was early morning when you wrote this, and as Canary says early morning and late at night is the worst time when what we have now really hits you.
    But I believe that coming on here and sharing your feelings does help, knowing that we all understand. Unless friends and family are living with dementia that can't understand what is involved.
    I think you should speak to your doctor and tell them exactly how things are now.
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    355
    Male
    Devon
    Thanks everyone. It touches my heart that you all care. This is the nearest I’ll get to sitting together with you and helping each other. I can only imagine, with the experience I’ve had with my wife, what you’re all going through. Wouldn’t it be wonderful if we could all get together for a big hug. Thank the stars for our forum. Peter.
     
  14. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    468
    Female
    Basingstoke, Hampshire
    When I add anything to a post I always imagine that I am just talking together. That way I feel I'm saying as it is and not over-thinking it.
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,402
    Most posts write their selves. They says friends are only a thought away. Good night everyone!
     
  16. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,381
    East of England
    Good night, sleep tight, I hope we do tonight.
     
  17. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    I know I have touched on this before... but still cannot get my head around it, and I am sorry if the subject matter offends, as it is not very nice...

    My OH has a stoma and a bag which attaches to his abdomen to collect faeces as he no longer has a colon.

    Unfortunately the operation to save his life and make the stoma coincided within days of his dementia diagnosis.

    He simply does not understand what the stoma is all about - he was delirious for most of the 6 weeks he was in hospital and does not remember any of it.

    He simply cannot grasp that the whole set up needs careful management if the bag is not to come loose and contents go everywhere. He cannot understand that he ought to be careful about what and when he eats and drinks. He cannot understand that if he wore his clothes differently if would be less visible. He cannot understand that if he wore jamas at night ( he has always slept naked) his turning over in bed or restless sleep would not cause the bag to come adrift.

    We have had all sorts of advice from stoma nurses and professionals. but they seem not to have come across someone who had these two major issues develop at exactly the same time.

    I am learning - through TP - how to manage the dementia, stage by stage, for which my thanks.

    But the other issue is getting beyond me. At 3am this morning, I was up again, changing his bed, sorting him out as he had not called for me - I simply woke because he was bumbling around not knowing what to do.

    I tried again, and the carer tried this morning to suggest that wearing jamas would help the bag stay put....waste of time - he doesn't understand.

    What am I supposed to do?
     
  18. Amelie5a

    Amelie5a Registered User

    Nov 5, 2014
    86
    Scotland
    Maryjoan you may already have done this, in which case I'm sorry for being no help!

    But I was wondering if it was worth contacting Colostomy communities to see if there were any tips.

    I had a quick look and discovered that Colostomy UK has a 24 hour helpline

    http://www.colostomyuk.org/support/helpline/

    If you haven't already tried them, maybe worth a call? Hopefully they might have a suggestion or two.
     
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    Ha! well done @Amelie5a - that is exactly the sort of information I was looking for - I did not know where to look for myself - prob a bit tired at the moment - but thanks so much !!
     
  20. Amelie5a

    Amelie5a Registered User

    Nov 5, 2014
    86
    Scotland
    Fingers crossed for you! Good luck...
     

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