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Thread: My sister

  1. #1
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    My sister

    My sister (M) was diagnosed as early onset Alzheimer's last year. she has just turned 57. She lives with my other sister (A, her twin) who is stuggling with the emotional stress. I feel not enough support is being offered. They have a once a week visit to the house by an Occupational Therapist and that's it. She is on Aricept but there has been no notable improvement. We feel M need more stimulation, we feel as though she is giving up. A has tried lots of different activities with her but nothing seems to capture her interest. I live 100 miles away and work full time so I can't spend time to help A apart from weekends. I spent the weekend with them both recently and I feel M has just become so disconnected with life. We just don't know what to do. Also A and her husband have booked a week's holiday - they desperately need some time to themselves. I will take a week's leave to be with M but (I need some advice here!) should I stay in her own house or should I bring her to my house? I thought perhaps being in my house might be a change of scenery but then I thought maybe she would find the change too much and might get distressed. Help!!
    Sorry about this rather inarticulate ramble. Any help/suggestions very welcome!
     

  2. #2
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    Sorry to hear about your sister

    Firstly Aricept does not work on improvement it is merely to slow down the decline. My mother has been taking it and I feel it has helped.

    Others may disagree but I would suggest you join your sister in her home where it is familiar. My mother gets very disorientated when she is not sure of her surroundings.

    Have you been in touch with the local Memory Service? This can be arranged by your sisters GP (but maybe the Occupational Therapist is all you have been offered so far)?

    Discuss the situation with your other sister and one of you needs to make contact with the GP and explain that more help is needed urgently - dont be fobbed off.

    Best Wishes

    Quote Originally Posted by Ferdy View Post
    My sister (M) was diagnosed as early onset Alzheimer's last year. she has just turned 57. She lives with my other sister (A, her twin) who is stuggling with the emotional stress. I feel not enough support is being offered. They have a once a week visit to the house by an Occupational Therapist and that's it. She is on Aricept but there has been no notable improvement. We feel M need more stimulation, we feel as though she is giving up. A has tried lots of different activities with her but nothing seems to capture her interest. I live 100 miles away and work full time so I can't spend time to help A apart from weekends. I spent the weekend with them both recently and I feel M has just become so disconnected with life. We just don't know what to do. Also A and her husband have booked a week's holiday - they desperately need some time to themselves. I will take a week's leave to be with M but (I need some advice here!) should I stay in her own house or should I bring her to my house? I thought perhaps being in my house might be a change of scenery but then I thought maybe she would find the change too much and might get distressed. Help!!
    Sorry about this rather inarticulate ramble. Any help/suggestions very welcome!
     

  3. #3

    Hello Ferdy

    We feel M need more stimulation, we feel as though she is giving up. A has tried lots of different activities with her but nothing seems to capture her interest.
    I found myself in this position with my husband. he kept telling me he was bored but whatever I suggested either lasted 5 minutes or he said he would do `tomorrow`.
    It might be worth trying to find out if there are any day centres for younger people with dementia in your area. Your sister might benefit from being with others.

    When A does on holiday I do feel it will be less of an upheaval if you go to stay with M. A long journey and new environment might be just too much for M to adjust to.

    Welcome to talking Point. I hope you find it helpful and supportive.

    Sylvia

    Former Carer and Volunteer Moderator .

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  4. #4
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    Hello Ferdy and welcome to Talking Point.

    I am sorry to hear about your sister but I am sure you will get much support here.

    When my husband was at the stage of not being interested in much I found taking him out for a ride or a pub lunch seemed to please him. In warmer weather I would take a picnic and he would be happy just sitting together in the car watching the world go by. I tried jigsaws and colouring (adult pictures for this can be found on the website and printed easily). Someone once mentioned that brass/silver cleaning kept her Dad happy for hours.

    You may find it useful to have a Community Care Assessment for both your Mother and her carer (both are entitled to one). This means you can explain the needs and I wonder whether a day centre 1 or 2 days each week would help. You need to approach a Social Worker and this factsheet explains.
    http://alzheimers.org.uk/site/script...documentID=131

    I am sure others will come along with other ideas.
    Best wishes
    Jan
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  5. #5
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    My sister

    thank you so much for your advice - it is much appreciated. My brother and I are meeting up at the weekend (he lives even further away!) to discuss what we can do to take some of the pressure off of A - who has now been diagnosed with depression and has been put on a mild anti-depressant. We also intend doing some research to try and find out what help there is in their area. I'll report back!
     

  6. #6
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    Ferdy, you sound like a very nice and caring person.
    We hear of so many family members who don't help or understand the situation because they are not there everyday but it's lovely to hear that it's not always the case.

    Good on you to help out in this way
     

  7. #7
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    As others have said your sisters GP and Social Services will have information about what is available in the area. You might want to find out if the OT is health based or social servies based, it does make a difference and who they are linking back to.

    As well as day services which provide really good breaks for carers, and friendship and interest for our relatives, in some area's there is 'Shared Lives' or sometimes called 'Family based Care' where one to one support is provided. It is accessed through a social work assessment.

    We were lucky to be able to have this service for Mum one day a week and it was very successful, the carer focused on social actiivites on a one to one basis with Mum, going out for a coffee, short walks, talking to her etc. This helped us as her daughters who were all working know that she was still having some social interaction at a time when we could not be there.
     

 

 

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