not sure I can cope....

Discussion in 'ARCHIVE FORUM: Support discussions' started by hmefh7, May 17, 2007.

  1. hmefh7

    hmefh7 Registered User

    May 17, 2007
    2
    london
    Hello,

    My dad has been recently diagnosed with posterior cortical atrophy ( rare form of ad- affects vision and short term memory- dad will eventually be blind) at the age of 58.

    He spent a month in Queens Square, London during which his partner of a number of years visited him once and subsequently gave him an ultimatum on thier relationship. Dad left hospital and moved in with my husband and I with literally the clothes he was standing in. That was two weeks ago. I have not been able to work since the beginning of april and not sure when I can go back as the social services are achingly slow. I am an only child and his care and wellbeing is my responsibility as his brothers and sisters cannot really help.

    On a day to day basis life is difficult( dad needs 24 hour care) - my dad is very intelligent but has problems with short term memory. He does not have any insight into his illness and seems quite unconcerned by anybody elses needs or concerns. My husband had to visit his own dad recently and dad spent the weekend complaining about the radio, tv any food i prepared. I felt like getting into the car and driving as far away as possible.I feel so tired and trapped its as if its a 24 hour, 7 day a week drudge. I feel terrible admitting this but our lives have completely been turned upside down. The only time I have to myself is when I go to the loo.

    Does anybody else feel this way? The bottom line is that I am dealing with the unknown.

    I am having a good day today and write this with out crying.....
     
  2. Áine

    Áine Registered User

    hello hmefh7, welcome to TP.

    i hope you don't mind my moving your post into this section of the forum, it's more likely to get seen and replied to here.

    it's a horribly difficult situation to be in and I'm not at all surprised you feel like driving as far as you possibly can from it. I'm also an only child so I can identify with that feeling of it all being your responsibility. I felt trapped too, and I wasn't caring for dad in my own home. I'm sure there will be others along soon who have been in similar position.

    best wishes

    Áine
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi ,

    Welcome to TP. Although I bet you wish you didn't have to be here!

    I'm not surprised you're shattered, it has all been so sudden for you. I can't believe that your dad's partner walked out on him. What sort of person does that?

    Accepting that the responsibility is yours, you need help, and fast. You need to contact SS again and jump up and down and make a noise. They are slow if they think you will let them. They can move quickly enough in and emergency, and you have to convince them that this is an emergency.

    Ask for carers assessment. No, demand a carers assessment. It is your right, but they won't tell you that. Tell them how bad things are, and that you need to get back to work. Really lay it on the line.

    The panic you are feeling just now is normal, I think we all went through it when the first diagnosis was made. But things settle down, and you learn to accept. But only if you get help. You can't do it on your own.

    You've found a brilliant forum, people here are so supportive. Please stay with us and tell us how you get on.

    All the best,
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi, and welcome to TP and DementiaWorld,

    sorry you have had to come here, but since you have - there is probably no better place to be in your situation.

    The symptoms you describe are not unusual really - my Jan has lost her sight through her dementia, and all memory [that we can discern] has been lost over time. Her dementia started at age 50 but we're 16 years into it now, and some way ahead of you in terms of the development of the dementia.

    I'm thinking that TP is probably rich with members who could write virtually the same things, and that is one of the powerful things about TP - it is a community of people who understand, because they are on the same road.

    All the above being said, one of our members has said "once you have seen one case of dementia... you have seen one case of dementia"

    While there are many similarities between cases, no two are identical, and family situations are also vastly different between different cases.

    I hope that TP will enable you to make the unknown a bit more familiar - forewarned is forearmed.

    A critical thing is to take care of yourself as well!

    Take care
     
  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Very well summed up hmefh7, it's the uncertainty (yet inevitability) of this awful disease which grinds you down to a large extent. Bad enough to observe a loved one's decline from any kind of illness, but one with no 'goalposts' & an unknown timeframe, direction, effect (or not) on their character ... One could wish for a nice kind massive heart attack sometimes, and this 'one' has & does, frequently.

    Welcome to Talking Point, most of us do indeed 'feel this way'. It may help to be forewarned, as Bruce says, but don't forget that whilst some dementia symptoms & characteristics seem to be common to many, you are unlikely to see them all in your Dad.

    Regards
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    hmefh7

    Welcome to TP.

    It sounds to me as if you have been thrown in at the deep end.

    Most of us have a gradual introduction to denmentia, but with you it seems to have come very quickly and the rapid departure of your dad`s partner has made you the carer, where once it would have been shared.

    I can only suggest you get as much help as you can. It will be difficult fior your dad to go to day care, as he is so young, but there should be home care available for you if you make enough fuss.

    The trouble is you need to be strong to make a fuss and right now you sound as if you are still in shock.

    Give yourself time to gather your thoughts, find out what help is available and take as much as you can get.

    Try to keep in contact with TP. The support system is brilliant and everyone is genuine. We all have different obstacles to deal with but they are all centred round dementia and the affect it has on families.

    Try to take care of yourself.
     
  7. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Hi there and welcome to the club. We are all here for the same reason and probably all of us first get in touch with TP when we felt at the end of our tether(s). Everyone is really genuine as Grannie G says and we all understand what each other is going through. And we're all dealing with dementia at different stages of the illness. You can ask here all sorts of questions and say what you think without people being judgmental. It's a steep learning curve dealing with someone who has dementia, they don't teach it at school!

    And most important of all, you will no longer feel alone.

    Don't be scared to really make a fuss about getting help from social services etc. it's what they're there for after all.

    Chin up.
     
  8. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Just wanted to add my welcome and to reinforce the things everyone has said so far.

    Please don't feel you have to do everything at once - or turn into Superwoman! Altho' it must seem like a jail sentence at the moment, there ARE things that can be done, as others have said. Get as much help as you can - but be aware that it is not always easy to get. Sometimes you have to DEMAND help. Don't be afraid to be TOUGH on your own behalf as well as your Dad's.

    Your Dad is so young and as you are the only one who can care for him, it must seem like a fearful burden at present. Please try to take it "a day at a time" (easier said than done, I know) and know that we are all here for you.

    With warmest wishes winging their way to you.
     
  9. hmefh7

    hmefh7 Registered User

    May 17, 2007
    2
    london
    not sure I can cope....but now at least i know i am not alone.

    Dear all,

    Thank you so much for all your kind advice.

    I am giving social services hell- literally- I have a new social worker who i do not feel has the level of experience or expertise to understand my dad's needs.

    Despite giving ss a comprehensive ot assessment - they still do not have a clue- I was told they could not help us as dad has moved from another borough and not ived in our borough for six months. I basically told them that if they did not get going i would drop my dad off at the crisis team unit - the choice was theirs- a bit suprising how quickly they made up their minds they could help... it is all soo draining fighting with them - his girlfriend who is seeking renumeration and a husband that thinks i am exagerating how hard things are.

    I contacted queens square and spoke to the dementia nurse specialist and additionally spoke to my local branch of ALUk who was brilliant. I also rang the local ot service and got all three to speak to our social worker and her manager. She must hate me but my priority is my dad. I also found out about a scheme which is like shletered housing but with cameras - if the patient is struggling someone knocks on the door. Dad is excluded from this service as he is not 60.

    I keep coming across age thresholds that make me really cross its as if there is lttle attention on early onset dementia.

    My job has been very understanding but for how much longer.

    apologies for moan bagging

    hxxxx
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london

    just before I new my mother had AZ I done that ( my mother was in late stage when told )

    I do not drive , so I use to just walk out of the house .

    please to read that you got the ball rolling for support , don't forget social services have they own day-center , have you tried your local AZ day-center so your dad can go they . I know he does not have AZ , but I wonder would they take him, so your can a few hours to yourself ?
     
  11. Gromit

    Gromit Registered User

    Apr 3, 2006
    187
    Edinburgh
    Hi,

    So sorry to hear about your situation. I don't really have any experience of your circumstances (my Dad has recently been diagnosed as early stage AD) but I just wanted to welcome you to TP.

    I have received a huge amount of support and some great advice on here. So do keep posting.

    It sounds like you have a big mountain to climb at the moment - but you already appear to be challenging and fighting to get what you need - that's definitely the type of spirit that will get you through.

    I hope you get some positive results from the relevant authorities and that you will soon be able to get some normality back into your own life - though I am sure you are aware that things won't be the same again. However, it is important to look after yourself too - don't forget that.

    Once again welcome. Keep on sharing - it does help.

    Alison
    x
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,879
    Kent
    . it is all soo draining fighting with them -hxxxx[/QUOTE]


    Why, when we have so much to worry about, do we have to fight every inch of the way.

    To exclude someone from a facility because they are too young , while taking no account of their need is all the `isms` rolled into one.

    To deny SS because someone hasn`t lived in a borough long enough, taking no account of the fact the person is ill and has gone to live with his daughter, is ludicrous.

    There should be some appeal system for those who don`t fit into the right boxes.
     
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #13 Margarita, May 18, 2007
    Last edited: May 18, 2007
    I know I don't how your local authority can say that to you , as in when my mother left UK after 47 years for 3 years and I brought her back to UK to live with me , My local SS did not say that to me .

    Only think I can think of is because your father doctor is not in your area , where my mother was in my area , still not right.

    PS
    Have you register your father at your doctor?
     

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