1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. betsie

    betsie Registered User

    Jun 11, 2012
    253
    My dad has been in hospital for just over a week with pneumonia. He picked up for a few days and started eating and drinking but he has gone down hill the last few days and will only sip a little tea and is not swallowing any food. It just sits in his mouth. He is also very rigid his legs are very stiff and tight and his feet are twisted together, he feels like he is gripping them together. They have him on a drip, oxygen with paracetamol IV.

    Hospital have just told my sister they want to send him back to the care home ( it is not nursing but they did take one lady back too die after Christmas).
    Hospital haven't said anything but I assume that means they can't do anything else for him ( up to 10 days ago he could still walk with help and drink and eat he is 89).

    I can't stop crying, he is so thin and frail now it seems so cruel that even though they know he is going to die we have to wait till he dies from dehydration and lack of food. I feel like I have let him down and just prolonged his misery by letting them give him the antibiotics and oxygen.
    I know lots of you have been through this already. What can I expect and what can I do to make sure his last few days( I just pray it is quick) are as comfortable as possible. How did you cope, I can't stop crying and feel numb. Why is this disease so cruel, it strips them of everything then makes them endure a slow drawn out death.
     
  2. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Afternoon Betsie,
    I am so sorry for the pain your in.
    The only advice I can offer you is based on the experience I went through with my mother but it depends on your other dependants.
    Just be there to hold his hand as often as you can.
    Make sure you drink plenty and try and eat.
    This part is a marathon.
    If possible, get your dad moved into a side room, if he is not already in one.
    Thoughts and prayers your way x
     
  3. Pottingshed50

    Pottingshed50 Registered User

    Apr 8, 2012
    514
    My thoughts and prayers are with you as well. As the above postee says, be there, hold his hand, he knows you are there , even if he does not indicate as such. When my MIL was dying I said exactly what you have said to the Vicar and he said exactly the same, just be there. I wish I could give you a big hug.
     
  4. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    130
    Our thoughts and prayers are with you Betsie.
    Just be there for him, he will know you have not let him down.

    We all hate this disease as much as you do.

    Take care
     
  5. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Betsie, I'm very sorry to read how poorly your Dad is. If it's any consolation I've read on here that the body starts to shut down near the end of life and food and drink are not needed so much. That doesn't mean that your Dad shouldn't be offered drink especially. Make sure his lips are moist (use a little vaseline), talk to him and take care of yourself. I'm sure your Dad will know that you are there for him.

    Love,

    Lyn T XX
     
  6. betsie

    betsie Registered User

    Jun 11, 2012
    253
    Thank you for all your kind words. Went to see him in hospital tonight and I knew straight away he was in pain. Took nurse an hour to find his notes before she put a paracetamol drip up. Asked for him to be made comfortable in bed as he was all scrunched up but auxiliary so busy and he fell asleep before I left. Hoping they do make him more comfy.
    Nurse said she will phone care home tomorrow to see if they will take him for palliative care but I think it will depend on the time scale as to how long the hospital think he will live as it isn't a nursing home.
    If the home do take him how do they manage his pain, do nurses come in?
    Sorry for all questions am hoping to see doctor tomorrow as no one has said anything official that he can't be helped and is dying, nurse just said they want to send him to home for palliative care.
     
  7. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Just an idea, but I wonder if they mean your local hospice? They are experts in palliative care x
     
  8. betsie

    betsie Registered User

    Jun 11, 2012
    253
    No, they want to send him back to the care home he has been at for the last 20 months.
     
  9. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Do you think that's the best place for him? It might be an idea to ask to speak to the duty social worker tomorrow for further advice and support.
     
  10. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Can't offer much advice other than my heartfelt sympathy to you at this awful time. Hope your dad's passing is peaceful, I'm sure you haven't let him down in any way. Take care.


    Sent from my iPhone using Talking Point
     
  11. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Hi Betsie

    If you are happy with your Dad's CH you could consider sending him back there. My late Husband was in a CH but District Nurses visited when palliative care was needed. Actually they visited for other ailments everyday anyway-it's a hard decision but he doesn't seem to be getting much comfort at the moment where he is

    Love,

    Lyn T
     
  12. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    Hi, I was in exactly this situation last November, Dad had pneumonia and its horrendous to see him so ill with no ability to swallow, in the end Dad went back to the care home which in many ways was good as it was close to where our family lives and we could stay there with him until the end with lovely carers that we had got to know, he went 9 days before passing away, he was 76 and I still have nightmares, my only advice I can give that I wasn't aware of at the time was the way they administer pain relief medication, the care home my Dad was at didn't / couldn't use a driver (I think they call it they )whereby the pain relief is all administered together by drip rather than individual injections every so many hours.........I think the driver is better because it administers constant pain relief instead of injections that wear off and need to rely on someone to give the next one through the night anne day..............I think it depends on the care home as to how pain relief is administered so worth asking the question.
    Take Care x
     
  13. betsie

    betsie Registered User

    Jun 11, 2012
    253
    I think my dad's journey will be over soon. He has had no fluids since Wednesday when they stopped the drip and hardly any food for at least 2 weeks. He has not been moved back to the care home as the palliative care nurse said he was too ill. He is on a syringe driver now giving him a steady dose of pain relief. If ran out while I was there last night and he was in visible pain. It was an hour before he was given an injection of morphine as it was staff change over time and they need two nurses to dispense the drug. I found this so hard, it is horrible enough seeing him like he is but knowing he is in pain is awful.

    Not sleeping great, I can't get to sleep and then when I do I wake up at 5am and can't go back off. Trying not to cry in front of my children, I am ok one minute then in tears the next. I find my worse time is when I am in the car alone.
     
  14. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    My thoughts are with you at this difficult time I can't give advice as I hav'nt been through this stage so sending you lots of love take care betsie xx Annie
     
  15. st4cy

    st4cy Registered User

    Feb 25, 2015
    9
    Thinking of you. Xx
     
  16. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    So sorry betsie, I know how hard it is, I know it was a relief when Dad went because it's like torture watching him suffer, thinking of you x
     
  17. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,109
    Toronto, Canada
    I'm so sorry Betsie. I hope things are peaceful for your father.
     
  18. marsaday

    marsaday Registered User

    Mar 2, 2012
    541
    Sorry to hear Betsie. The same thing happened to my FIL but, as we waited for a suitable home to take him for palliative care (his own residential home said they couldn't have him back), he worsened quite quickly and became too weak to move from the hospital. Sounds as if your dad doesn't have long now. Just try to be with him as much as possible.
    Take care.
     
  19. submarine

    submarine Registered User

    Apr 5, 2013
    25
    London
    Just sending you some kind thoughts at what must be such a difficult time for you.

    submarine
     
  20. supertrooper

    supertrooper Registered User

    Jul 18, 2011
    33
    It's a tough time for you, but I am thinking of you, you have been brave think of your lovely family and draw strength you can only give your best. Try to find some time (however little) to be kind to yourself along the way.

    I can only offer you thoughts that I hope you will find comforting. Please come back when you are able and when you would like to. I will be around to listen and do my best to support you, I am only one amongst all the others here who really care.

    Big Hugs xx
     

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