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. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    179
    Hi everyone,

    Not a good day today; I went to visit mom in the care home, she was very down and tearful, Kept putting her head in her hands and crying all the time I was there. She keeps asking me to take her to live with us, she constantly says how frightened she is and thinks the communal lounge is hers and that it is too big.

    I came away so down heartened, my hearts aches so much, the only way I can describe how I feel is that I am grieving for the mom she used to be. I can see her, I can hold her, but my heart is so heavy. All I want to do is cry.

    She said that she is so unhappy and she is going to die tonight. I feel so bad because I cannot look after her like she wants me to. I wish I could. The tears are streaming down my face again, I just can't seem to stop crying. All my friends tell me that it is the dementia talking, but just what if she is that unhappy and we are failing her?
     
  2. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Patricia my heart goes out to you and I'm sorry nobody has replied to you yet. I only joined today and I think my Mum is not so far down the road as yours but I still understand the way you are feeling.

    I am very new to all this but, as I understand it, my Mum's vascular dementia means that she is likely to be much more emotional than usual and will react to things much more strongly than she used to. So your Mom's reactions could well be the dementia talking but it's still affecting her at the time. Have you tried visiting her at different times of the day, maybe when she is in the communal room and not expecting you so you can observe if she is indeed unhappy or actually participating with the other residents quite happily and maybe just forgetting later on?

    My Mum is spending the first few hours of every day crying inconsolably and yet she doesn't seem to know why. I think she knows what is happening to her but also it could well be part of the dementia. I try to distract her with other things or by making her laugh which I can still do for now. My Mum is still in her own home so there are more things to distract her with but maybe showing your Mom photo albums or picking up momentos in her room and asking about them could distract her? These are things that work for my Mum although she has lost a lot of her vocabulary and I have to second guess what she is talking about.

    Try talking to the care home staff about what she is like when you are not there. If you have any concerns they are not being that caring then definitely turn up unexpectedly and see how she is being looked after.
     
  3. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    179
    Thank you so much for your reply, it is very much appreciated.

    I am new to this also, so welcome.

    We have spoken to the staff who says our visits disrupt her, so we have cut back to 3 times a week. They say she is only like it when we are there and participates in the activities. Today she was agitated before I got there and was quite sharp with the carers. She thinks she is being held prisoner and can go out of the building when she wants and its so hard trying to get through to her that she can no longer do this unless we are with her.

    I am dreading the light nights because she is going to think it is day time up until 9pm, this could pose a problem.

    Dementia is such a cruel disease. I hope you can continue to care for your mum for as long as you are able. We tried, managed 3 years, but in the end we had to realise that it was only going to get worse, not better. I think we were in denial.

    Thank you for your reply.
     
  4. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Hello Patricia and Suzanna, and a warm welcome to the forum. I'm sorry I missed your first posts otherwise I'd have posted earlier.

    I'm so sorry that you both find yourselves in this position. My mam still lives at home with my dad, who is fighting to keep her at home with him for as long as possible, often at great personal cost, so I know how very hard it is to carry on like that, and also suspect that I couldn't have possibly hung on as long has he has, myself.

    I don't think anyone has failed anyone here. We do what we feel is the right thing at the time, and there are lots of things to take into consideration over and above the person in question. Please don't berate yourselves.

    I'm sure people more experienced than me will be along very shortly to offer their wise words of support, so in the meantime, hang on in there, you are not alone.

    xx
     
  5. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    179
    Thank you College Girl,

    I know we have done the right thing putting mom into care now but the guilt will always way heavy.

    Not a great visit today, she cried uncontrollably again for the whole 2 hours.

    Thank you for taking the time to answer.
     
  6. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    My mum used to cry too. It is so difficult. One of the experts said that dementia makes patients more labile. I think this means emotional but knowing this does not make it any easier to cope with. My mum used to cry when she was at home before she went into residential care as well. I feel it is likely if this is the stage your mum is at it would probably continue to be upset wherever she was.
    My husband also has dementia. He does not yet cry like my mum did but his eyes fill with tears if he listens to a sad story which is not how he was prior to this disease.
    It is very hard to witness someone you love distressed and not be able to give them any comfort.
    With my mum I did found she responded well to music and used to take her some CDs with hits of the 50s from her youth. This usually distracted her. It might be worth trying.
    My husband likes the I'm Sorry I Haven't a Clue series which usually lifts his mood or his favourite film Life of Brian.
    I hate this disease.
    Tre
     

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