1. Jool

    Jool Registered User

    Apr 21, 2006
    13
    Kendal, Cumbria
    I have been following Talking Point for some months and have found it a great help reading about all the advice and support offered.

    My 84 year old father was diagnosed with AD about 18 months ago. Initially he was prescribed Aricept but this was later withdrawn because of side effects and nothing else was offered. My main concern is that my 81 year old mother is his carer and she is finding it very difficult. I am an only one and live 90 miles away and am therefore not on hand. Dad has been in for respite care on 3 occasions now, but this just seems to make him more and more confused. Last time he asked the staff to ring home for him and then proceded to tell my Mum that someone had stolen the car. She was very upset about this. I then phoned the Home to tell him that the car was at his house with Mum and he promptly told me that Mum was downstairs (the care home is a single storey building). Since coming back from respite this last time he is convinced I still live with them (I am 50 and moved out 32 years ago)


    What I'm trying to ask for advice on is is it worth all the up-set and confusion while he is in for respite care. Mum desperately needs these breaks but feels guilty about sending him away. They both come and stay with me regularly but I have stairs in my home and Dad is finding these very difficult to deal with now

    To add to the problem Dad has very poor hearing and everything has to be said two or three time to him to get him to hear and then repeated on numerous occasions because he has forgotten. He won't wear his hearing aid because he can hear "perfectly well"!!

    Thanks for listening

    Jool
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Jool, warm welcome to TP. So glad you found us.

    I am a great believer in respite (and I am sure your mother needs some time to herself and to re-charge her batteries)

    The downside to respite is that it can confuse our loved ones but...........it is not always the fault of respite. Just because we notice things more when they come home, does not mean that respite is to blame.

    What I'am trying to say is that their condition can deteriate at any time, respite or not, and whilst I am sure that mum, with your help, is doing her best she must surely need her 'time out.'

    I suppose another alternative is to have a carer move in with dad whilst mum takes a break, but this can cause as much upset.

    Re-reading this I don't think it's much help, but at least you know you are not alone. Take care now,

    Connie
     
  3. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    Hi Jool....and welcome

    There are lots of amazing people on TP who have loved ones at home and have a good knowledge of respite. I just wanted to say, "Hi"

    I haven't been "here" for long, but I have been here long enough to know this is a great site, where there is lots of support and advice....even if someone can make you feel like you're not alone :)

    ....and that's just what I intend to do, really. I have little practical advice, except that I, too, am an only one...and was, until recently, over 100 miles away from my parents (long story) so I understand the feeling of helplessness that comes with being sooooooooooooo far away and doing everything by phone.

    The only thing I can say is that my dad only went into respite once and it totally confused & upset him. He was saying the most bizarre things, far "worse" than when he was at home. The CPN suggested that some AD sufferers who appear to manage quite well at home often find it completely disorientating when their prop - her word, not mine (!) (she meant..home & spouse) has been 'taken away'. The sufferer can become more confused, say the strangest things and even become agitated or aggressive.

    I don't know if this message is much use, but things have settled down for my dad now, but he is in a permanent residential home, rather than respite so he has got routines and familiarity again (albeit new ones).

    Jarnee
     
  4. Áine

    Áine Registered User

    hello Jool

    Welcome to TP.

    I can see the dilemma about respite. I think my dad lost some of his abilities to do things for himself when he went into respite care because he was disorientated and waited on hand and foot. On the other hand, before he went anywhere near respite care he was thinking that his house (lived there over 30 years) wasn't his home. And also thinking that I still lived with him. I left home 25 years ago, but he'd phone me over and over some evenings, asking what time I was coming home and telling me off like a teenager who'd stopped out beyond her curfew time ;)

    My dad also has pretty awful hearing, and I'm sure that adds to the confusion. For one thing I think people who can't hear tend to switch themselves off into their own little world. The other thing is that they think they've heard, and let you think they've heard, and they haven't. I've found it's very difficult (impossible often) to distinguish what is confusion/ dementia and what is muddle because of poor hearing.

    On balance though, your mum needs a break or the wheels are going to come off completely. Unless she has time to recharge her batteries she's not going to be able to care for him at all, and then it's going to be more than respite that he needs. There's no ideal solution in this .... always seems to be making the best of a limited set of options

    best wishes
    Áine
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    My mother has said some wired things when at respite after she got home & does settle down after a while.

    Its well worth it .



    Mum in emergence respite at the moment she seem to be more alert as they encourage her to do things for herself like washing herself & dressing herself,

    She does not get my drift in conversation & have to repeat thing a few time & then ask it all over Again But I understand this is all part of AD , beside that she seem ok .
     
  6. Jool

    Jool Registered User

    Apr 21, 2006
    13
    Kendal, Cumbria
    Thanks for your responses. The CPN will visit my parents next Friday with a view to fixing up another date for respite care. Hopefully my mother will accept the offer. Dad of course thinks there is nothing the matter with him apart from wobbly legs. My Mum is on a waiting list to have cataracts removed from both of her eyes so perhaps if he gets more accustomed to the care home he will be less disoriented if he has to go in then

    Jool
     

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