It's not just Mum, it's Dad too..................

Discussion in 'ARCHIVE FORUM: Support discussions' started by Tilly Ann, May 17, 2008.

  1. Tilly Ann

    Tilly Ann Registered User

    May 17, 2008
    5
    Lancashire
    I have just registered and am very encouraged to think that I may have found somewhere to share experiences and maybe get support and advice.The story so far is long and complex but here goes..

    My mother was diagnosed with Alzheimers in 1996, but my father did not tell my brother and I until 2002, when he was forced to give us an explanation after I had threatened to take mum to the doctors myself. He had, until then, constantly told us lies about diagnosis and treatment.

    Over the past 5 years my parents have continued to live in their own home, supported by a P.A. each, (my father is blind) thanks to the direct payment scheme. Obviously the hours have increased with mum's need, but in the last 2 years she has been sectioned and taken into the psychiatric unit of their local hospital for long stay on 2 occasions.

    My father is a controlling and arguementative man and I have considerable difficulty coping with him. The way he speaks to me and undermines me has taken it's toll, and after discussion and support from my husband, daughters and brother, has resulted in me only visiting them on a once a week basis since last year. My husband and I live 70 miles away.

    I have tried continually to help, mostly in an organisational or research capacity as I am not good with dealing with mum's personal needs, but as a retired business woman have good administrative skills. Dad either say's he knows or has already done whatever I suggest, or lectures me on how it won't work/can't be done. It is only since mum was first taken into hospital 2 years ago that I have met the visiting psychiatric nurse, consultant and social worker and learned more about the care package, as dad has always said he was told by the consultant that everything was confidential therefore I couldn't be told.He also threatened not to allow me to see mum if I ever contacted them, or any other member of her care team; but it was one threat I did ignore.

    I must say that my brother has been treated the same way but is more than a match for dad and therefore stands up to him. This can result in dad being even more secretive but my brother does share anything he gets to know with me.

    Unfortunately his attitude means we go through P.A's rather quickly! We do have a wonderful P.A. who has been with them a couple of years for 20 hours pw but as for the rest..... well for example, one lady lasted a day and a half last week!!!!I have been trying for a long time to get dad to think about 24 hour care at home and he refuses on the basis that mum doesn't want people over night - in fact if he doesn't like or want to consider something he always say's it is mum who won't accept it.

    I made the mistake a couple of years ago of suggesting they have a couple of weeks respite together in a care home close to me. It was a disaster with dad complaining it wasn't up to his 5 star hotel standards as soon as he arrived and mum escaping, which resulted in her being sectioned the first time.Dad, of course, holds me completely responsible and doesn't let me forget it!

    Dad has put up with a great deal and I do understand and respect his actions are born out of a fierce protection of mum and her illness.
    It's also fair to say I suspect he was in denial for a long time, he has his own disability which he manages magnificently and he adores mum so sacrifices himself and his own needs, even though he gets physically abused when she has an "attack".

    I have repeatedly told dad there are 2 people to be considered here and that he deserves some quality of life.

    The last few weeks have been very difficult for him, carers not staying and mum being aggressive and after one particularly bad night 2 weeks ago, he rang the social worker which resulted in the social worker convincing dad he needed rest and suggesting mum go into a local nursing home for a week. Dad didn't of course tell us this but I completely agree and think it has been a success.
    Whilst mum was away dad managed to replace the carer who left and she started last Tuesday - she rang in sick yesterday which is usually the first sign they don't want to continue.

    This is the very first time I have spoken about all of this apart from with my husband and daughters and I would be very grateful to anyone who may have been in this position and who may be able to offer me some advice.
    If nothing else it has helped alot to write it down. Thanks
     
  2. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Hi Tilly Ann

    Just wanted to welcome you to TP you will find lots of information here.

    I have no experience of the problems you are having..but many others will soon reply with helpful hints and advice.

    Linda x

    PS my dad always called me Tilly!;)
     
  3. Tilly Ann

    Tilly Ann Registered User

    May 17, 2008
    5
    Lancashire
    It's not just mum, it's dad too........

    Hello Linda,

    Thank you for your reply, lovely to hear from you,

    Tilly Ann
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    Hello Tilly Ann

    The only experience I can share with you is that of very private, proud and stubborn men. Your father and my husband.

    I don`t know about your father, but with my husband, much of his behaviours are based on fear....fear of illness, fear of the unknown, fear of what will happen in the future.

    It was probably easier for your father to withold details of your mother`s condition in case his life line was taken from him. Better to live with great difficulty than to live alone. Better not to cope than have strangers coming in and interfering in their private lives.

    It had to take a crisis and your father had to get to the point when he made the decision for himself. He was the one who asked for help, no-one asked for him. So it was the right time for him.

    He probably shuts you and your brother out to save having to discuss something he finds so painful.

    I might be reading this in the wrong way and if so, I`m sorry. But there is something very sad about people who put barriers up to protect themselves. Possibly people like your father and my husband.

    I do hope things improve for all of you. I also hope you will be well supported on Talking Point [TP]

    Take care xx
     
  5. Christinec

    Christinec Registered User

    Aug 8, 2007
    214
    Hi Tilly,

    I kind of decided last night that I would not post any more as I feel that anything I can add is coloured by my experience but cannot resist and please take it as "meant to be helpful comments" and "I know how you are feeling".

    My situation involved having, as I saw it, to be involved in going against my Dad, the main carer, to get help for my Mum. Tilly - I could have written some of what you have written.

    In retrospect I worry terribly about whether I did the right thing. At the time I did what I felt was right for my Mum because I felt my Dad could not care for her anymore and it was destroying both of them as he became iller both physically and mentally. At the same time much of his behaviour was probably due to stress and pride. To be honest I am stil very angry with him (never a good relationship with either parent)because I feel he manipulated me so that he avoided being the on to put Mum in care but can blame me.

    He seemed to be in denial and unable to accept the services he was offered to keep Mum at home. Nothing was ever good enough. Mum seemed to be very unhappy at home and had been for as long as I remember. I think the only other thing I coud have done is become full time carer to them both and although I recognise many will see me as selfish I was not prepared to do this for a number of reasons. It would not have been good enough anyway. I also must say in my defense that the professionals working with them took the action and say they would have done so sooner if I had not been around but I feel that it is my fault as I would not be the full time carer which is apparently my father's expectation.

    Really I do not know what to advise but you have my complete sympathy. Dammed if you do and dammed if you do not. I wrote down a lot of what happened and this has helped because I kind of forget how bad things were and how worried I was but reading what had happened over many years reminds me. Should they have been left alone to manage in their own way although my father refused help, left my Mum alone (she is terrified of being alone),lost his temper - perhaps she was used to it after all these years, treated her inappropriately? Now she is in a care home, looks well and reasonably content but still asks to go home. He visit each day and looks better than he has for years physically but is very lonely.

    No the stress of this (watching two people falling apart) is not the same as for 24/7 carers but you are in a very difficult place. Called on to solve problems but nothing is right and then you get the blame. (Like you my skill is organisation).

    Sorry for the rave - I doubt if it help anyone. Reading this over the only thing I suggest is writing down what you tried to do and why for your future sanity.

    Take care. Remember sometimes you just cannot solve other peoples problems or make them happy however much you try.



    .
     
  6. Christinec

    Christinec Registered User

    Aug 8, 2007
    214
    Other people with this experience

    Hi Tilly Ann,
    I sohould have welcomed you to TP which has been invaluable to me in all sorts of ways. Reading my last post to you yeasterday I realise it probably was not very helpful.

    We all do what we can and it is difficult to know what is best.

    I hope others will come on and and give you more useful replies.

    Best wishes
     
  7. Tilly Ann

    Tilly Ann Registered User

    May 17, 2008
    5
    Lancashire
    Dear Christinec,

    Thank you very much for BOTH of your replies - very welcome and gratefully received.
    It is so good to know there are others who understand,I seem to have misplaced my fight recently and just writing the story yesterday seems to have helped.
    I'm really pleased your father is looking better now and your mother more settled - although my mum is constantly asking to go home even though she is home!
    Thanks for your kind words.
     
  8. Tilly Ann

    Tilly Ann Registered User

    May 17, 2008
    5
    Lancashire
    To Grannie G

    Thank you for your reply - what a lot of good sense you talk!

    I have read and re read your post and think you are so right,Dad has got barriers and I do feel sorry for him and what he must have suffered - and still does.

    I am really pleased to have found this web site, it is very comforting to know people are there!

    Best wishes:)
     

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