1. Expert Q&A: Living well as a carer - Weds 28 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 Wednesday 28 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. rubyrosie

    rubyrosie Registered User

    Mar 28, 2014
    24
    It's late and that probably doesn't help ,but I am feeling so sad....I haven't posted for a while as I didn't want to bother anyone ...Mum is still with us although she is double incontinent, on risperidone for frightening delusions and hallucinations, which seem to be coming back again, thickened fluids , hoisted I full body harness for bed to reclining wheelchair and takes little pleasure in anything....I hate myself for saying it but what is the point ..her quality of life is zero and I hate to visit her and see her like this . each time I go I wonder what she will say or see and I feel that I am looking at a shell of my Mum...it's almost a year since she fell at home and was in hospital then NH ...My sister and I are going to her house to try and sort things out this weekend and I am dreading it to the pint I don't want to go....it feels like such an invasion of her life to decide what should be sold/thrown out or kept when she is still alive ...Tears are running down my face and I hate it Not even sure my husband understands how I feel anymore either ...it seems to go on and on ...so sorry for the rant ..I love my mum but she's gone really x
     
  2. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,589
    It's a dreadful, painful path, Rubyrosie, for your Mum and for you and your sister.

    I know what you mean about invading your Mum's life...I felt like that every time I went into any of her drawers and it never ended, that feeling of intrusion.

    All I know is that my Mam was glad she had us to help and support her, your Mum will be glad too.

    It's hard for you, gosh...yes, it's hard.

    Hope your Mum stays peaceful and pain free until the end, she's your Mum still.

    I wish you strength and courage to continue, it's so very hard...to long for the end while struggling with the present and loving the very bones of the person at the very centre of it all. xx
     
  3. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    So sorry that your poor Mum has little quality of life, seeing a loved one suffering with no hope of things improving is very hard indeed.

    You were not ranting and certainly not bothering anyone. TP is here for us all to support each other so please post as often as you need to. We can't do anything to help your poor Mum but I do hope that knowing there are people here who understand how you feel and want to listen will help you, even just a little.

    If she is getting hallucinations and delusions then maybe a review of her meds might help?

    I do hope that you and your sister are able to support each other through this very painful time. Take care.
     
  4. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    It's such a hard road to walk when every step is downhill. I first took mum to the GP about her memory problems on 27th January last year. Every month brought new problems, we tried everything we could think of to improve her quality of life and tried to keep hoping. I would never have believed it if someone had told me we would have lost her within the year. Perhaps it was better that we didn't know. Don't feel bad about how you feel; I had all the thoughts you describe in mum's last few weeks and although I miss her now I can't feel sad for her.
     
  5. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,535
    North East England
    I am so sorry, rubyrosie. How very sad and difficult for you. I don't know what to say to make things better, but please know that we are thinking of you and you are not alone, we are always here, so offload all you like.

    xx
     
  6. rubyrosie

    rubyrosie Registered User

    Mar 28, 2014
    24
    thank you

    Thank you all for your support it does help ...I guess I have to try and accept the journey will end when the time is right, but although she is not currently in pain it just feels so awful ...this has to be one of the cruelest illnesses ever x
     
  7. Pinnochio

    Pinnochio Registered User

    Dec 3, 2012
    16
    Also feeling sad

    Hi
    I am sorry you are feeling this way, It is the most awful disease, as my daughter says it is the long goodbye!
    I feel so sad as I haven't the energy for the battles with my mum just to get her to eat, be washed and dressed and take medication! Since December I have had an assessment from SW, had a home visit from our GP, but things are not any better!

    The carers report each day (only started last Monday) that mum has hit them, slapped them and spat and declines to get washed and dressed which is what I couldn't do!
    Our Gp who is also aware of my recently acquired autoimmune liver disease (my antibodies attack my liver) along with diabetes has said she should go into a residential home. I feel dreadful that mum is being subjected to this as I would also hit and spit if some stranger came into the house and tried to strip and wash me which is basically how it is! She doesn't remember anyone from one minute to the next! Mum is 85 with advanced Alzheimers. Its heartbreaking!
     
  8. saucepan

    saucepan Registered User

    Jul 30, 2014
    40
    Hi Rubyrosie
    I am so sorry to hear about your poor mother, and poor you suffering. It is so hard to see our loved ones deteriorate so badly and have no quality of life and yet they are still hanging on. You seem to have got a double wammy of her body completely breaking down as well as the hallucinations. It is so sad and the emotions we feel are a rollar coaster and its not a ride that we can get off.

    Good luck with the sorting, I hope that once you get there and get stuck in physically it may not be as bad as you are thinking it will be right now. Be prepared to hit a few handgrenades along the way which will trip you up and make you cry. Although things seem impossible right now, you will get through it.
    Big hugs, you are not alone.x
     
  9. Ginnykk5

    Ginnykk5 Registered User

    Jan 6, 2015
    70
    Hemel Hempstead
    My sister and I are going to her house to try and sort things out this weekend and I am dreading it to the pint I don't want to go....it feels like such an invasion of her life to decide what should be sold/thrown out or kept when she is still alive ...Tears are running down my face and I hate it Not even sure my husband understands how I feel anymore either ...it seems to go on and on ...so sorry for the rant ..I love my mum but she's gone really x[/QUOTE]

    Hello, I am so sorry for what you are going through. Its such a sad thing to do.
    Dont rush to clear things out unless you have to. I did it a little at a time. your emotions will come thick and fast when looking at her possessions bringing back better times. Once you have had enough walk away and come back another day.
    All the Best x
     
  10. flower1

    flower1 Registered User

    Apr 12, 2013
    124
    Hi Rubyrosie I have just read your post and and I relate so much to what you have wrote. My mum is in a very similar way in the severe stage of vascular dementia 5th year everything you wrote corresponds to my mum too and like you feel so upset as lost the mum I know in the long goodbye as it goes on and on. I too had to empty the family home and also sell to fund her care it's heart breaking. My thoughts are with you and I feel your sadness and frustration. Keep posting on here I feel it has helped me when I feel there is nobody else to turn to and those on here understand. Take care xx
     

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