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. Edu

    Edu Registered User

    Jun 1, 2018
    Hi everyone
    Mum has late stage Alzheimers and my brother and I care for her at home. Six weeks ago she lost the ability to Stand unaided and can’t walk anymore. A week last Saturday I checked Mum for bed sores etc and she was clear. By Monday she had a massive bed sore at the base of her spine, near the tail bone. Then in the following few days she got sores on the heels of both feet. We actioned the nurses who came out to change the dressings. The next Saturday I was helping Mum toilet and noticed a horrid smell
    When I checked the spine sore the dressing was coming off. So, (maybe stupidly) I had a look. It smelt rancid and I could see muscle. I covered it back over and rang the nurse to redress it. Yesterday, Monday- I had a total panic attack. I suddenly realised that my mums condition was totally out of my hands. I could now, not do anything to stop these horrid sores. Mum has begun to get swelling in her hands and also now has not been for a wee in over 24 hours. I called the doctor today for a home visit. His advice was to increase mums pain medication as this was really the only thing that can be done for the sores. He said it’s difficult for sores to heal especially when she is not eating very much and is definitely not drinking enough water. When I mentioned the wee thing he said he was concerned and that we need to monitor this.
    Can anyone relate to these symptoms and how do you manage them on a day to day basis. I’m still waiting for the tissue viability nurse to come and assess the spinal sore. Even she said on the phone that she was concerned. Everybody appears to be concerned but nobody says why? Any feedback would be greatly appreciated.
  2. Beate

    Beate Registered User

    May 21, 2014
    Someone should be supplying you with an airflow mattress to aid the sore healing, otherwise the advice is to turn her every two hours, though I do understand that's not something that's easily achievable in a non-hospital setting. Get the nurses on to the mattress thing.
  3. Edu

    Edu Registered User

    Jun 1, 2018
    Thank you Beate
    Mum has a special mattress and we do turn her
    But she had also started with red spots on the inside of her left elbow and left knee
    The nurses and the doc all said we are doing everything as we should but at this late stage mums skin breaking down.
    That’s why I got so upset. The realisation that whatever we do will not help Mum.
  4. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    My husband only ever had one bedsore which he obtained whilst in hospital. His nursing home battled for months to clear it and they did. As my husband became bed bound he had an airflow mattress and was also turned every two hours. As his legs contracted a pillow was put between his legs to avoid skin contact. he also had Gell type plates put under his heels and elbows.It was all preventative treatment and it worked.
  5. Edu

    Edu Registered User

    Jun 1, 2018
    Thankyou for your reply. We also use a pillow between mums legs but she gets really agitated. Guess that means she doesn’t like it. And, what Mum wants, Mum gets. Bless her, anything to keep her calm. Why is everything so hard?
  6. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    Glad you've managed to post this and now got some good advice.

    If it's any consolation my m-i-l had bedsores for about 8 years. They were 'cyclical' and went through waves of improving and then deteriorating. We had barrier creams and fortunately never got to stage 3 sores, which my mother had with here dementia, when she became bedbound. She also was turned had an airflow mattress, but I think with dementia they tend to be worse and when they stop feeding then it's almost inevitable that skin breakdown will occur. It's all part of the deterioration I'm afraid.

    Definitely get the SN to check regularly especially with an open wound and in this hot weather try to ensure everything is cotton and as cool as possible.
  7. Leedsloiner

    Leedsloiner Registered User

    Jan 8, 2016
    Hi edu , I am so sorry your mother is suffering with the bed sores . Like you and your brother my sister and I cared for mum at home . My advise to you is to not allow the doctor to watch and wait . Get your mum pain relief . Keep on at the DN to try and keep on top of the sores. Our mum passed away last November. Nothing prepares you for what you have to witness with this terrible disease. Find out who is monitoring and what actions are to be taken to keep your mum pain free. It is really hard to care for your loved one at home but not impossible. You just have to yell for help and have an understanding compassionate gp. Take care and know you and your brother are doing your best for your mum.

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