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Discussion in 'Health and wellbeing' started by marionq, Oct 12, 2019.

  1. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    i hardly know what to call this thread as what my husband is eating could barely be called a diet it is so little. After a hip break and three weeks in hospital he has now been in a nursing home for just over a week. SALT recommended level 4 purée and level 1 thickened liquid. He has 4 or 5 half teaspoons of food most of which he pouches and has to be removed and occasional sips of liquid.

    He is disappearing before my eyes and sleeping most of the time. Very little speech left. How long can this go on? Should I just bring him home to die on his own bed? How would I do this? Ambulance and district nurses for catheters? He is on no medication at all now apart from painkillers if he should need them.

    I don’t feel qualified to make these decisions. His 4 week assessment will end at the end of this month if he lasts that long. What should I do next?
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,590
    Female
    Dundee
    I'm so sorry to hear this Marion. It's heart breaking. I suppose our situation was a bit different (Bill had aspiration pneumonia) but there are similarities. During his last week in hospital it was clear that he was approaching the end. I was, with the help of our care manager, trying to make arrangements for him to come when he died in hospital. The intention was that our care package would have remained in place and there would have been visits from the district nurses to turn him etc. I had also made contact with the Hospice at Home organisation but didn't have the chance to find out what they offered. This is a link to the general hospice organisation but I can't find the one I used back then -

    https://www.hospiceuk.org/docs/defa...picecareinscotland_september2016.pdf?sfvrsn=2

    I think I may have emailed our local hospice and asked them about the possibility of palliative / hospice support from them.

    I'd also hoped that Marie Cure nurses might have given support, as they did when my mum died at home with us.

    Thinking of you both and wishing you strength.
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    Just sending you both love, MarionQ
     
  4. charlie10

    charlie10 Registered User

    Dec 20, 2018
    320
    Thinking of you both, Marion....I hope you can find support to help you make decisions
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    When you list your husband `s problems, Marion do you think you could provide 24/7 care no matter how good a care package you get?

    My husband also had aspiration pneumonia like Izzy`s Bill and I know its not the same, but all medication was shown to be ineffective so was stopped. The care home said they would provide palliative care and I could be with him without the worry of meeting his other needs or having to call out paramedics and possibly having to wait a while for attention.

    I would leave him be and just be with him.

    My heart misses a beat at the thought of having to go through that again. I feel for you marion and hope whatever decision you make is the right one for you.
     
  6. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    I just feel so useless. Normally I’m full of ideas but now I have none. I’m having to talk to staff about John instead of doing things myself. My eldest daughter is here with me at present and we can’t discuss anything without bursting into tears so we are no use to each other.

    Possibly next week I will phone the SW/Care Manager and ask her to
    Meet me at home to talk about this. When she met me in the nursing home last week I was too upset and John too ill for her even to take notes. Better away from the emotional centre to try and reach a decision.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    I think you`ve realised you're facing something which is beyond your control Marion which is why you are your daughter are so upset.

    Such a sad and heartbreaking time.
     
  8. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,028
    Nottinghamshire
    Sorry, no suggestions, but I’m thinking of you.
     
  9. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,212
    Merseyside
    Having nursed both my Mum & Dad to the end at home, I would say it’s very difficult as you get absolutely no rest as you are running everything. Washing, meals, opening the door to carers, GP etc.
    You can spend quality time with John in the home while others do the donkey work.
    Wishing you strength @marionq.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    My mum passed away in her care home. The carers were wonderful, turning her every 2 hours day and night as well as washing and changing her while she was semi-conscious. I found it so emotional during this time and I honestly dont think I could have coped with any hands-on stuff as well.

    The only problem was because mum was in a care home, rather than a nursing home, they were dependant on the DNs to come and give her pain relief. Tt would be the same if she had been at home. On one occasion the manager called the DNs as she was in pain, but it was 3 hours before she got any pain relief. After this mum was put on a syringe driver, but there was a wait for this too. All of this was because of problems with DNs travelling and having to get around to see many people. If mum had been in a nursing home with nurses on duty, there wouldnt have been this wait.

    Coupled with the fact that he may find the journey distressing, I would honestly think that it would be better for him to remain where he is.
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,141
    i think my lovely that you know the answer to your own questions. the fact that all medication is withdrawn apart from pain killers answers your first question.

    ensuring comfort & a peaceful transition for your beloved. Ask to speak to the palliative care team, they are on 24 hour call. 7 days a week 365 days a year.

    if you want your husband to be home then ask for this to be arranged with the care & medication to be in place to ensure you are able to be his wife & not the carer, you can then choose when to care for your loved one.

    yes this is possible & yes I have experienced this with my biological mum, I am in the process of arranging this for mum - future care package being sorted so she has the option to pass in her own home.

    Dad is in a care home & fades daily - on Tuesday the new GP will review ( looking to stop all medications apart from Pain patches) & I won’t be able to bring Dad back home to pass.

    I wanted to send you love & strength for the days ahead, precious time to hold & comfort your husband as he travels along this part of life’s pathway.

    sending love & hugs
    Xx
     
  12. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    Today was utterly harrowing but you are right again fellow TPers. We had to wait for a GP to be called out to give medication to relieve his laboured breathing. I had the support of my daughter and the nurse on duty was superb. Wanting to control the situation is more to do with my personality than the circumstances warrant. We left John sleeping more peacefully and came home to a stiff gin and yes I do feel better.

    Thank you one and all.
     
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,035
    Yorkshire
    just to send warm thoughts and sympathy to you, your daughter and to John, @marionq
    I hope you all have a peaceful night
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,141
    so tonight a phone call to say paramedics have been called- in we go to sit with lovely paramedics who are waiting for the Dr on call to call back
    Prescription of morphine sent to pharmacy that is closed!!! So after trying to get hold of 111 & 3/4s of an hour later all the pharmacy’s are closed & still no human on the end of the automated system!!

    so good old A& E on a Saturday night & a wonderful triage nurse gets us the prescription sorted & dispensed!

    so here I am ,spicy mulled wine made & two dogs cuddling - what a week & what a rollercoaster! OH gone to bed - just listening to the clock ticking......
     
  15. Lawson58

    Lawson58 Registered User

    Such a difficult time for you Marion.

    Just a brief comment. It doesn't sound as if your husband has much an idea of what is happening so maybe this is the time to do what is going to be best for you. If you really want him home then go for it but if you think this next part of your life is going to easier by leaving him in care, then that is what you need to do.

    I wish you strength and peace.
     
  16. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,212
    Merseyside
  17. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    Thank you all and I will come back at a future time but for the moment I need to tell you that John died this morning around 11 am. My daughters were with me and I hope he could hear us talking about family events.
     
  18. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,212
    Merseyside
    Oh @marionq, I am so very sorry. My thoughts are with you.
     
  19. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    493
    So sorry to hear your news @marionq . Glad you and your daughters were there
     
  20. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,180
    Female
    Chester
    Oh @marionq - such a shock, I'm so pleased both you and your daughters were there.

    massive ((((((((hugs)))))))))
     

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