1. maryholl711

    maryholl711 Registered User

    Hello everyone. I would like to share my experience of looking after someone with dementia. My aunt is 89, has had a fall where she broke her hip which remained undected by the hospital where she used to live for three months, she also had multiple fractured ribs and a stroke all at the same time. She lived on her on, having lost her husband, brother and disabled son (he had Down's Sydrome) some time ago). Over the past 18 months, her memory has got worse and worse, she has spent more time in hospital than out of it. The doctors said she must never be left along again, she just couldn't cope anymore. So, as most of her family that are left are elderly themselves, we decided to have her move here with us rather than put her into a home where they would probably just shove her in a corner and forget about her.

    Since she has had all these medical problems, she has also become doubly incontinent and cannot be got out of bed as her hip is too sore and she has also had odema in her legs, they are very swollen and have been bandaged up by the district nurse, her skin is extremely thin.

    She gets very confused, she thinks she is in her own house, although she does not luckily get violent. She sleeps a lot and is also extremely deaf. The doctor has said we should enjoy her whilst we can, she has so many medical problems the list goes on and on. Her blood pressure keeps dropping dangerously low, so she cannot be moved out of bed.

    All this said, we have had brilliant help from the care workers, the local hospitals, the doctors and social workers here in Swansea, as a matter of fact, they have been over backwards to help us which is more than I can say for the health services in Berkshire where she came from who didn't seem to give a damn.

    We do find it extremely tiring looking after her all the same, she eats like a mouse and you have such a job to get her to drink anything at all. She has tried to get out of her hospital bed twice which would be so dangerous as she would fall straight over.

    I just wanted to share my experiences with others...how do they cope with the feeling of being cut off ? We feel very guilty about respite care for example if we should need it. What if something happened to her in there? Does anyone else have these feelings.

    Nice to get this off my chest..bye for now. Mary
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,733
    Kent
    Hello Mary, welcome to TP.

    What you are doing for your aunt is wonderful. I can understand how life must have changed for you since she came to live with you. It must be impossible for you to get out.

    You would certainly benefit from respite care. You know your aunt`s condition could change at any time, whether she was at home with you or in a respite care home. If your health suffered through such demanding caring, where would your aunt be then.

    It`s good to know you have supportive home care. That seems to be the luck of the draw, depending on which LA you are with.

    I hope you keep posting. You will find people here who understand what you are doing and the problems you face.

    Take care xx
     
  3. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Mary, and welcome to TP.

    I think your Aunt is very fortunate to have such a caring niece. It's great from the medical side of things that you are getting the right support. Sorry to hear she is so poorly.

    Mary, from reading other posts RESPITE is a very important part in the caring role I personally never used it, but strongly recommend you give it your consideration.

    I can understand your fears concerning respite but you also need to recharge your own batteries. I am not sure how the respite works in the UK but here in Australia you can shop around at available homes ( most have to set aside beds for respite) and choose one that you feel is suitable, then you place your name on a waiting list. I wish you well in your caring role. Regards Taffy.
     
  4. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi Mary

    What a lovely caring family, and how lucky your aunt is to have you. As others have said, looking at Respite care is sensible. If you were not able to care for her, for example due to your own illness, you would want to know she could go somewhere acceptable and be looked after, so it is not too soon to start looking. Also, if she did need to go into permanent care, you would already have experience of a home which might have a place for her.

    Do consider it, if only for a few days at first.

    Love

    Margaret
     

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