1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Suzie64

    Suzie64 New member

    Jan 17, 2018
    Hi my name is Susan and I have been a carer for my mum for the last 7 years. It has been a very roller coaster ride but the final stages seems even more scary and much more of a emotional roller coaster. Last November my mum had a fall. She seemed ok after she had been checked out by the paramedics. But then a few days later she began to stumble and couldn't put one leg in front of the other. Then we found that she had a ulcer on her heel so was put on bed rest. They got us a proper bed for.mum to lie in . That was the 19 th December 2017. The ulcer on her heel is healing but she now has one on her leg which isn't getting better but not getting any worse. Mum is now hit and miss with her eating and drinking. She also is getting very chesty some day are worse than others. Everything we have done for mum we have had to fight for. Mums wish was to not be put in a home and as a family we have followed that through, even though at one time they were going to fight us to put mum in a home. At the time we kept telling the doctor her medication wasn't working but wouldn't listen to us. As a result she lost weight and went down to 6 stone. She was put in restbite for four weeks to sort her medication out and put some weight back on. The nursing home were trying to get her to stay in. But we fought so mum could come home. Now all mum does is sleep and eat when she feels like it. It's horrible just watching my mum slowly die in front of my eyes. And like everyone else has said you don't know how long it will last. Sorry for the long draft
  2. margherita

    margherita Registered User

    May 30, 2017
    Italy, Milan and Acqui Terme
    I am sorry for you, @Suzie64.
    I can only imagine how heartbreaking it all must be.
    I admire your courage and love when you decided to keep your mum at home.
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Suzie64, although it’s a sad thing that has brought you to TP you are welcome here. I wish you the strength you need to continue caring for your mum. Do take a good look around this site as you may find something that will help you. Otherwise keep posting with any questions or observations as this is a friendly, informative and supportive place.
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hello @Suzie64
    so sad to read your post
    your family are being amazing in supporting your mum's wishes - I do hope you have support yourselves, though, as taking on her care alone is a challenging task
    is there a hospice local to you, as talking with the staff there may give you some comfort and useful suggestions
    and Marie Curie nurses are there to help with night sitting at end of life, though your mum's GP will need to make a referral to them - I hope a district nurse visits too
  5. Leedsloiner

    Leedsloiner Registered User

    Jan 8, 2016
    Hi Susan, Well done for caring for your mum at home . It is very hard going sometimes , I helped my sister who was mums full time carer. If you are facing this alone GET help . We always said mam was not going into a home if we could help it . Mum sadly passed away last November . She went into hospital a couple of times in August with suspected sepsis. She became unwell again in October and was in hospital again with Aspirational pneumonia she also had difficulty swallowing and was put on puréed food and thickened drinks. These are classic signs of End stage dementia. Still they discharged her and we were pleased and frightened to have her home. We by choice had no social care help we did everything for mum all her personal care was done by us . After mums last discharge we asked the GP for palliative care . Mum was bed bound doubly incontinent and unable to eat or drink and our doctor didn't think mum was in need of palliative end of life care? Mum died Not at home as she wished but in hospital less than two weeks later. We are in the complaints process at the moment. Knowing what we went through with mum all I would say is get CHC funding in place so palliative care can be applied for. Read up on Nhs Nice guidelines end of life care. Otherwise you end up trying to to get end of life care in place when you should be caring at the end.We were very naive in not knowing about funding . Read up as much as you can. We looked after mum for eight years while she suffered with this horrible disease . Nothing prepares you for the end stage . I loved helping to look after mum she was such a gentle soul with or without Alzheimers . I do hope you manage to keep your mum at home just be prepared for a roller coaster ride of emotions. Take care and keep loving .

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