1. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    232
    Newcastle upon Tyne
    I’ve just come across this site tonight, and it is a great help to know that I’m not alone in going through this.

    Dad (79) was diagnosed with AD over two years ago, although I had guessed long before then what was wrong. His GP was not helpful and I felt I was banging my head against a brick wall trying to get him to take any notice. Mum (80) was caring for my Dad, who has always been a difficult person to live with and so I put my Mum’s behaviour down to the stress of living with him and his illness. But....she was developing AD as well. I got her diagnosis on the same day that my Dad went into permanent care, just before Christmas. Everything fell into place and I knew why Mum had been oblivious to Dad’s incontinence, couldn’t help him to manage his pills, wouldn’t stop him going out alone, didn’t realise he wasn’t washing or shaving, and was sleeping in his clothes. She couldn't understand he needed someone to care for him – she just felt angry that he was the way he was.

    Early in December Mum had finally said she said she couldn’t live with him any more, and Dad agreed when his Social Worker suggested a respite stay – we told him it was to give Mum a rest, because she couldn’t sleep due to his wanderings. The second night in respite (we assume) he fell during the night and broke his arm. He was very agitated the whole time he was there and I knew there was no way Mum could cope with him or keep him safe at home, so he went straight to a permanent care home, where he has been for about 6 weeks now.

    His stay has been eventful to say the least. He became very aggressive – they had to take his walking stick away because he was hitting people with it - and he is now on haloperidol and lorazepam. With two hip replacements I worry that he is going to fall again. Last week he was wearing shoes that weren’t his, and he hasn’t had his glasses for over two weeks. I don’t know if the home is a good one or not, as it is the first one his Social Worker found that had a place. Some of the carers and nurses seem nice, but the woman in the next room to his wails like a banshee and he appears to be the only man there most of the time.

    My guilt is overwhelming. I know that what would make him happy would be to be at home (or maybe he doesn’t remember home?) in his own chair and his own bed, but that can’t be - but only because Mum can't care for him. If she didn't have AD he could still be at home. Mum never asks about him, and he never asks about her. She doesn’t ask to see him – they have been married 55years. When I mention him she shows a fleeting interest as if I am talking about someone she doesn’t know. All I can do now is wait and watch her decline. She has word-finding problems, so it is hard to have a conversation with her, and I know this makes her very frustrated. She knows there is “something wrong in my head” but she hasn’t yet been told she has AD. She understands little of what is said to her – she is also quite deaf and her hearing aid seems beyond her. She can manage on her own for now but I know soon there will be pressure for her to live with me.

    She has a twin sister – they have been so close all their lives but now they seem to irritate each other. I think my aunt, who is mentally alert, is reluctant to take on a carer role – she has osteoporosis and is physically frail so I look out for her too – shopping etc. They do not spend as much time together as I hoped they would: both spend most of the day alone watching TV even though they live in the same street.

    The paperwork in sorting out finances and allowances is endless, and we do all their shopping and house maintenance. I have a 13-year old son who we have to abandon every weekend to do all the things we have to do. The responsibility is huge. I am an only child, so no one to share this with apart from my long-suffering husband and I work full time.

    When my Dad was at home I wept for my Mum having to live with him; now I weep for Dad being in a strange place that he hates. And I ache from hiding the tears.

    Thanks for listening.
     
  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Carolynlott,
    Welcome to Talking Point.
    That is what T.P.is sharing. We have all felt guilt but there is only so much than we can do and that it why the Proffessional are there to care for our loved ones 24/7.
    Can you Father have his favourite chair in the N.H. ?
    There are many symptons that happen with A.D. and everyone is different, which I am sure you will know.
    There is a Local Alzheimer's Branch, Crossroads, Help the aged, Age Concern, Princess Royal Trust.
    You can go on to the Home page and print off fact sheets and even ring Alzheimer's Head Office to speak to someone, they are really helpful.
    Other people will come on line and also give you support but someone always seems to be here 24/7.
    In all this please don't forget you and try to look after yourself.
    I wish you all the best
    Christine
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Caroly, welcome to TP.

    What a lot you have on your plate! It's hard enough coping with one parent with AD; to cope with two, as well as having a full time job and a teenager, is mind-boggling.

    I imagine your aunt is keeping her distance in case she is expected to more in the way of caring than she is able. Could you perhaps have a word with her, and say you don't expect her to look after your mum, but it would be good if they would perhaps have coffee together, or something, now and again?

    Have you investigated what help is available? Your mum should have an assessment from Social Serice, and you should also have a carer's assessment. It may be that your mum could go to day-care for at least one day a week, which would give her some company.

    Have you also contacted your local branch of Alzheimer's Society? They will be able to advise you on what is availab' locally.

    I hope you manage to get some support, you eally have too much to cope with.

    And post here with any questions.

    Best wishes.
     
  4. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    716
    Ashford, Kent
    Firstly, welcome.

    Secondly, you will find this place a godsend.

    I am new here too and feel that my world is crumbling.

    We're all here to listen and support each other.

    Beverley x
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Carolylnott, your comment really touched me:

    And now I ACHE FOR YOU. My dear,can only imagine the heartache you stand behind.

    Carolyn, I only hope that life treats all of you kindly.
    That your dear mum comes to term with having to care for your dad.
    That you manage to continue to support both your mum and dad.

    Mostly I hope that dad maaanages to find peace in this strange world he finds himself in. If he can find 'peace' then your part in his life will slot into place.

    My love and thoughts go with you.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,591
    Kent
    Dear Carolyn.

    The children on TP who have the responsibility of both parents are fortunately in the minority. But with all of them, the responsibility is daunting and they are worn down with worry.

    Those of us who care for one person with dementia are in awe of you.

    I hope that now you`ve found TP you will at least get some moral support, and feel able to offload to people who understand.

    Love xx
     
  7. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    232
    Newcastle upon Tyne
    Thanks.

    Mum was visited by a support worker this week but apparently declined any help such as visits to a day centre, so my Dad's Social Worker (who I assume is also my Mum's) said there wasn't really a role for them at the moment. Mum is clinging to me and is very afraid; she has never been the type to mix socially. She hasn't had a visit from her Consultant with the "diagnosis" yet - he spoke to me by phone before Christmas and said he would leave it until after New Year.

    Mum goes to see her sister most days for a few minutes but the "help" seems all one way at the moment.

    I have thought about Dad's chair - unfortunately his old chair would be too big - I asked if I could get him a new one as there isn't one in his room, but I was told that they prefer everyone to stay in the lounge - I guess it's easier to keep an eye on them there. He has a TV in his room but he can't operate it.

    I visited my local Alzheimer's Society about a year ago and they were great in setting the ball rolling with promtping a Consultant's visit and alerting the Consultant to my Mum's problems - I am so grateful to them (thanks Kirsty).

    I feel I can't live my Mum's life for her and if she doesn't want outside help I can't force her.
     
  8. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi
    I know you can't live your Mum's life for her, but could you introduce help gradually?

    The time will come when your Mum won't be able to manage without help and a softly, softly, friendly approach now, might pave the way for later.

    I introduced carers to my Mum at first as good friends of mine, who wanted a cup of tea.

    Alfjess
     
  9. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    232
    Newcastle upon Tyne
    Many thanks for the support. So many people out there seem so positive - I know the only way to get through this is to be that way too.

    Saw Dad in his care home today - he was very content, and I think that's the best I can hope for, as I know he will fluctuate. Don't think he knew who we were - introduced us as "friends having a look round because we might like to stay somewhere similar in future". Bless.

    Main problem at the moment is his belongings going missing and him wearing other people's things - even though all of his stuff is name tagged.

    Will take on board about trying to encourage Mum to accept some sort of contact with support workers etc. - probably best in the long run.
     
  10. jimsandy

    jimsandy Registered User

    Jan 31, 2008
    16
    Soldiers Grove
    Carolynlott

    I can relate to some of your issues with family member (mother)with Alzheimers/dementia and am the only child. But thank god for spouses who are supportive through it all. I do work full time too, but remember it does not hurt to shed a few tears once in awhile. As that is our way of healing ourselves, and be sure to get some r and r for yourself along the way. I do understand your guilt with the situation, but remember you did not do this to them. It is just a part of life and getting older, and sometimes people in this support group are going through some of the same things you are and maybe worse. Keep your chin up and keep smiling. jimsandy
     

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