1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. mousehold

    mousehold Registered User

    Mar 25, 2015
    27
    Norfolk
    This is my first post. I have been caring for mum for about 5 years and she went into a home about 6 months ago. She broke her hip in the home and seemed to really go downhill from thereon. Having arthritic knees doesn't help but now her legs have swollen up to such an extent I am really worried. The worst thing is she will not sit down but endlessly stands up, walks about dragging the leg with the bad knee (not the replaced hip) behind her. She looks in terrible pain and won't rest or stay seated even when I visit which is several times a week. Can the anaesthetic from hip op make her mental condition fall so much? The only thing I could reason out with her was that by standing up she felt more in control. She is constantly crying out for help but not sure what for. Also getting aggressive. I don't know what on earth to do. All her time day and night is spent wandering around like this in pain and exhaustion. A social work team is monitoring her at the moment. I'm beginning to wish she would have a heart attack or something, not a very nice wish for your mother! I am distraught and quite ill myself.
     
  2. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    #2 RedLou, Mar 25, 2015
    Last edited: Mar 25, 2015
    You poor thing. I believe that anaesthetic may indeed lead to a deterioration in dementia - it is a subject often talked about on here, and a search may lead you to other relevant threads. What are the team monitoring her for? It sounds as if she might need meds to relieve her anxiety (pacing) and aggression: has this been mentioned?

    Also - my father had swollen legs (water retention) and cellulitis; these were sorted out quite quickly.
     
  3. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    My mum always used to be worse when she was in pain with a headache or something, perhaps your mum isn't getting the right pain killers, can you check?
     
  4. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    Why can't they just call in her gp? Swollen legs sounds very painful. My mum had terrible wandering and standing all the time, she could not sit down for more than a minute, her ankles were swollen and could not stop scratching her lower legs. Meds have been changed and a cream for her legs. Have to ask what are they looking/monitoring?
     
  5. Jessbow

    Jessbow Registered User

    Sounds a bit weird- but has anyone checked her backside for sores?
     
  6. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,919
    Suffolk
    Could it be cellulitis? See gp. Some people also have swollen legs after hip surgery, not sure why, but it happens pretty frequently. I would get her checked ASAP
     
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Hi mousehold and welcome to TP :)

    My first thought is that this sounds like a medical issue ....any of the issues mentioned above, but perhaps especially pain. It seems to me that she needs medical attention before there's much point in social workers getting involved.

    Hope you are able to improve things soon, you are both in distress by the sound of it.

    All the best

    Lindy xx
     
  8. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    1,085
    Brazil
    My mother always get worse if she has pain or discomfort.
     
  9. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,293
    SW London
    Surely she needs to see a doctor urgently. Hugely swollen legs are a matter for medics, not social workers. I think you must insist, and if at all possible ask to be present at the time, or to speak to the GP afterwards.
     
  10. mousehold

    mousehold Registered User

    Mar 25, 2015
    27
    Norfolk
    thank you

    thanks everyone, I only just saw all these messages as I am new and thought messages came through to my email so unaware of all your thoughtful replies. It seems overwhelmingly that I should address the problems through her doctor one to one and not assume weekly visits by the nurse will do. It was my gut feeling but I was leaving it to the care home I think, I can't find my place between social workers, care home, doctors etc, feel a bit cut out of the loop.
     
  11. mousehold

    mousehold Registered User

    Mar 25, 2015
    27
    Norfolk
    Pain control

    I did talk to the doctor and mental health team who were observing mum about my conviction that she was in pain with 2 seriously arthritic knees and a recently broken hip and worked out that they must have taken her off the 'blue patches'? which seem to have provided a proper amount of pain control despite making her dozy and just left her on paracetamol. I think this pain must have resulted in her 24 hour wandering around on her swollen legs and made her aggresive with her legs getting worse.
    Now she is back on the patches I feel so much better for her as she sits down, dozes off to sleep and seems more sociable. I have implored the doctor to leave her on them and she said she would. Her legs look better as they are getting some rest. I am a particular non-believer in paracetamol as it happens and cannot see that a drug you can order online with your supermarket shopping can be very good. I was horrified to have been put on them recently after a liver transplant and spent most of my hospital stay complaining of pain and asking for something stronger. I think I have become a conspiracy theorist on the subject!
     
  12. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    I am glad you found people's replies to you , you must have felt we had ignored you .

    I am also glad that the cause of your mums distress has been rectified , why on earth didn't they think that your mum was on pain patches for the very good reason of being in pain.

    My mum was on pain patches too, I can't remember their name their are several.
    Mums ones did make her a little more sleepy for a while , they started her on a lower dose first , think it was 5mg which worked well for a long time , then it was upped to 10 mg as her pain had increased .
    So it may be worth checking on the doseage, if you feel your mum is sleeping too much.

    Hopefully now yor mum is not pacing around so much, her legs will improve dramatically.

    Your mum must be so much more comfortable now Which hopefully makes you feel a bit better.
     
  13. mousehold

    mousehold Registered User

    Mar 25, 2015
    27
    Norfolk
    Thank you so much, it is true I feel more at peace with the situation (for now)! This forum is so good as I also feel less alone in all my varying responses to the disease by reading other people's reactions. Despair and anger etc. It is so hard because it goes on for so long, she was happy and fun with her dementia until recently. She wrote a poem about how 'life has just begun' - heartbreaking now.
     
  14. CHEESEGRATER

    CHEESEGRATER Registered User

    Apr 2, 2015
    2
    Firstly, don't feel even remotely guilty about having thoughts about your mum being better off having a heart attack or similar. I'm sure that's very common - I've certainly wished for my mum to just not wake up one morning on many occasions. For HER own good as well as the well-being of many people involved in her care.
    Secondly - re the swelling legs - I discovered that the Vascalpha blood pressure tablets that mum takes does exactly the same to her lower legs. Does your mum take any tablets for high blood pressure? If so, it might be worth asking if she can discontinue temporarily to see if the swelling reduces.
     
  15. mousehold

    mousehold Registered User

    Mar 25, 2015
    27
    Norfolk
    Thanks for that, very helpful. She has been re-assessed and they say there is a difficult balance between meds that help the heart/reduce water retention etc as too much of one can cause other problems like kidney damage. They say that the leg she drags behind her is part of dementia, control breaking down in the brain, also her cries of 'help me' all the time are also dementia based and should be responded to differently by not going to her etc. It is all a maze to me, I find it difficult to visit her now although I go twice a week. It is heart breaking, visited her old house in the week - the beautiful garden overgrown, birdbath dry etc. I can't tell what effect it's having on me as I feel 'frozen'. I am also recovering from a liver transplant I had in September the same time she went into a home and now has gone so downhill I wonder if being in care has made her so much worse.
     
  16. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,501
    Female
    Near Southampton
    Just to add that my husband whose dementia was not that bad before a major operation - amputation at thigh level - and a bad reaction to morphine - suffered a gradual but speedy deterioration of his dementia afterwards. So ,yes it can happen.

    The other thing is to say that you can receive notification of posts on a thread on your email by adjusting the settings on your profile.

    I'm glad your mother is now calmer and in less pain than previously.
     

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