1. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    At my mums post funeral "do" my sister asked some of my mums cousins if anyone else had suffered Dementia/Alzheimers in mums family. It seems that 2 of mums aunts did have this problem. Are their any tests that me, my brothers and sister can have to see if we are susceptible to this horrible disease?
    Snuffy
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    The short answer is YES. You can request genetic testing, but please take further advice before going down that road. Can understand your concerns though. Thinking of you, Connie
     
  3. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Snuffy please don't worry about these things, there would be nothing you could do anyway if they said yes and you would lead the rest of your life in worry of it coming on.
    It's time to let go of dementia world now, grieve then live a little you really deserve some me time. This is your time coming now to let go of worries and fears of dementia and all that accompanies that disease, you've done your time.
    Live snuffy in hope, the door is open, walk away.
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Snuffy Magic is so right.
    Let go and find a life for yourself now ,you deserve it.
    Rember what I have always told you day by day.
    All best wishes
    Norman
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Snuffy

    I agree with what the others have said.

    Only one thing to add - carpe diem!

    Since there is nothing that can be done to protect us from dementia if we are destined to have it, if you find out that there may be something genetic that would link you in, just live for today. You could mess up your life worrying and find out eventually that you were ok anyway.

    I do appreciate that we can´t help worrying once we have been with anyone at all who has dementia. I´m on holiday at present and hid one of my cameras in the hotel room, then forgot where I had put it so thought I had lost it. First thoughts were immediately that my brain was starting down a bad road. I realised eventually that it was simply that I was out of familiar territory, and having to do unusual things for reasons of security, at a time when everything is strange here around me. In other words, SNAFU as far as I am concerned, which, being politely translated, is ´situation normal´for me.... ;)
     
  6. alaneg

    alaneg Registered User

    May 2, 2005
    13
    Wirral UK
    Re Question

    Hi Snuffy,

    I too have asked myself the same question and whilst I must agree with the previous answers in that I wouldn't want to KNOW that dementia was going to be my lot in the future, I still think that it would be nice if possible to do something to help prevent it, just in case. A couple of years ago I asked my father's doctor at the specialist memory clinic the same question. Whilst she obviously didn't want to discuss the subject she did indicate that yes dementia could run in families. I asked if anything could be done to help prevent it and in a slightly offhand way she just said Vitamin E. So in the belief that it can't do me any harm and might do me some good I have been taking a capsule a day since. I also take ginko biloba as I read somewhere that it might also help.

    I have heard that Arecept which my father has been on for over 7 years is most effective the earlier it is prescribed. I wonder if any trials have been done on its effectivness if taken by people before the first signs of dementia.

    I do think that this is an interesting topic and one well worth discussion on this board, after all we are all consious of the part diet and excercise play in our physical wellbeing and after all the brain is just another organ maybe we should do what we can to protect it.

    Thanks for raising the topic
    All the best
    Alan
     
  7. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    How many days will it take?? At the moment I am wandering around seeing so much that needs doing in the house and garden but get nothing done.
    So empty inside and life also empty.
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Snuffy

    there is a wonderful paragraph in "Peter Pan" where Mrs Darling is looking in on Wendy and her other children last thing at night. She goes around putting all the thoughts they had in the day neatly into order in little boxes so things will be well for them when they wake up.

    It is the same thing for us when coming to terms with horrible things, except it is not Mrs Darling, but time that does the sorting. It is not possible to predict how long it will take, but it will happen, eventually.

    I know about the paragraph above since Jan played Mrs Darling in our local amateur dramatics production of "Peter Pan" at Christmas in the early 1990´s.

    Long ago, and the remembering still hurts, so I guess the sorting in my case is not complete, neither will it be for many years yet.

    Best wishes
     
  9. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    so tired. This forum is a great help. Thanks to all.
    Snuffy
     
  10. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi Snuffy

    Mum died in February. I go from phases of manic activity where I have got to get everything done to be being so tired all I want to do is sleep. Work has suffered most for me (and my garden.) All my motivation has gone. It does not seem to matter anymore. But they have been wonderful and told me to take as long as it takes really.....

    Mum's affairs were fairly simple, I am the only one, there was a will all nice and tidy, but it has still taken an age to get sorted. I have just about finished now by posting a few momentos to friends and family and they were so pleased - little things like this help me so much. It was my birthday recently and I asked for a large jewellry box - Mum had some nice things, mainly rings and watches. I have had them sized and cleaned I take great pleasure in wearing them and having somewhere lovely to put them - this has also worked for me.

    Geraldine
     
  11. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    Thankyou all.
    Mum has died and still getting to grips with my feelings I also have to cope with having to move. I have lived in mums house for 20yrs but now it is part of the"estate" and will have to be sold.
    Have cared for mum for so long and now I find myself with no money, no job and no future.
    snuffy
     
  12. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #12 Mjaqmac, Jun 2, 2005
    Last edited: Jun 2, 2005
    Dear Snuffy, this is every carer's fear.

    As a carer the DHSS only give you 8 weeks after the person you cared for dies to sort yourself out. I have had a monumental battle with social services and I hadn't even sorted out my mother's affairs. I was to make myself "available for work" (that was the letter I got 8 weeks to the very day mum died) considering I have been a carer for the past 17 years, and been suffering panic attacks and agoraphobia because of it, this wasn't as easy as it looks on paper. I finally resolved everything but it was a nightmare and I am now a carer for dad (back to square one but so far without Alzheimer's).

    I get married in 10 weeks and will have to move my new husband in to live with us. I love dad dearly but at 39 this wasn't my fairytale. The siblings haven't come near us since mum died, I have no time with my fiance as dad has to go everywhere with us. I have one sibling whom doesn't speak to me at all because I wouldn't let him bury mum when my father's wishes were for her to be cremated. He made my mother's funeral a nightmare when he instructed my neices to ignore me, I was crucified on the worst day of my life for nursing my mother for all those years and fighting for my father's wishes to be carried out after her death. Neither of the other 2 siblings stood up for me, they just looked the other way and didn't want involved in the argument. When dad dies they will rip me apart for the house, dad is reluctant to make a will so I know exactly what my future will hold. More fighting. There have already been a few comments as to what happened to my mum's jewellery! Dad gave it to me and now I feel like I should be giving them some of it. Mum didn't make a will either!

    This is the reality of being a carer, we save the state millions of pounds but we are non entities to our families, the government and it seems everyone else. Being a carer is a mug's game, but it's out of love we do it. The only good thing that comes out of all of this is that we know we've done our time and given it our all and I for one have no regrets. I would do it all again tomorrow but that doesn't change the fact that carers need more back up than this and we are given no help at all when a loved one dies.

    Making a will is very important to a carer but you can't force people can you?

    Good luck snuffy. I wish there was something I could say to help. Being a carer before and after is the toughest job in the world. You don't expect the awful stuff that happens afterwards and there is only sympathy for a very short time. People have the attitude you should be relieved in some way. The truth is I miss caring for mum, she was like my baby. My life has been turned upside down too. I never expected to be treated like a criminal by the government and by my siblings, this has been such a terrible, horrible time but I'm still standing snuffy and so are you. You will find that same strength that carried you through caring for your mum. Use it snuffy. We carers have to have a fighting spirit, keep going day by day. Opportunities will open up to you, nothing stays the same forever.

    Stay strong. Fight. Make a new life. You can do it. Look at the awful misery you've handle so far, look at the circumstances you have already overcome, not many could have stood it snuffy, you did. That makes you special. Use that special strength, only this time care for yourself. Put half the care you did into yourself that you did caring for your mother and the world will see a snuffy to be reckoned with! Good luck snuffs. x
     
  13. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    thankyou for that very kind message.Can't do it.
    Had a really bad day today. To many tears and stuff.
    Mum had the the best idea. Its such a horrible horrible world.
     
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Snuffy

    Sometimes even Norman's "Day by Day" is too much to handle.

    For the moment you may need to switch to hours, minutes, even seconds to get by. What you are going through is your body's way of adjusting to something so deeply painful. Don't even think, then, of what is to come; just get by for the minute.

    The future will take care of itself, given time.

    Yes, the world does seem more horrible than usual at such times. When I was in something vagely like your situation for the first time [when I lost Jan to the home], I would drive along to visit her and curse all the 'well' people I passed for being...'well', when Jan was so unwell. It all seemed so unfair. My world had stopped and they were just going on as normal, as if nothing of note had happened.

    Now it still seems just as unfair, but I no longer begrudge others their wellness - in part because most people have a sorrow of some sort that we can't see.

    Take care

    Bruce

    N.B. someone copy these words back to me when Jan does finally succumb... I know I won't be in a state to remember them just then! :(
     
  15. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Snuffy please be kind to yourself. I know the horror and pain you are going through and as I said before, people only give you sympathy for a very short time.

    As Braveheart says, just get through the minutes. You are not alone, I am having a nightmare too, lots of us are, it doesn't help I know to hear that, but what I'm saying is, you will get through. Please don't do anything drastic, this too will pass, you're too special to lose from this world. You don't know what wonders are waiting down the road for you, don't dismiss that thought as ridiculous, there maybe be someone or something waiting in a little time pocket down the road from now whom will make you so glad you survived this.

    Hang on.

    Someone said life's hard by the yard but by the inch it's a cinch. Take it in inches then Snuffy if that's the easiest to handle now.

    We all send you a great big carers collective hug.

    In my time of great sorrow I rang the samaritans, they were great.

    HANG ON SNUFFS YOU CAN DO IT. GET THROUGH TONIGHT AND POST AND LET US KNOW TOMORROW HOW YOU ARE.

    Love from Magic.
     
  16. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    DearSnuffy
    last Wednes day was my bowling day ,it rained and there was no bowling.
    I went and sat on a shoping centre and hated all the happy couples that I saw there.I thought about you.
    I was so alone,miserable,unhappy and bitter.
    I didn't want to be there,I wanted my beautiful,vivacious wife back,my friend,my lover ,my reason for living.
    My Peg was out somewhere with a comparative stranger,a minder,a sitter.
    This the woman who had supported me through all the ups and downs, the highs and the lows of our long marriage,now she had to be minded like a child so that I could go out and leave her.
    She will often say "you will never leave me" and I never will.
    I hate this awful awful disease and the misery it brings to people
    Day to day

    Best wishes
    Norman
     
  17. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Stormin' I think you're wonderful!
     
  18. daughter

    daughter Registered User

    Mar 16, 2005
    824
    I second that Majic. I wish there was a smilie icon for 'hug' - one for you Norm.
     
  19. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Know where your at Norman. Thinking of you, Connie
     
  20. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    You are so right, Norman: when you've spent a lifetime sharing everything, "getting away from it all for a break" just doesn't have the sparkle it is supposed to have, in fact, it often makes you feel worse than simply staying put and carrying on sharing ............
    :eek:
    Hopefully, 'the sun will come out tomorrow ....' (about time we had a song title in here again)
     

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