Early Onset Alzheimer’s-Just diagnosed at 52

Discussion in 'Younger people with dementia and their carers' started by t0ny, Apr 27, 2009.

  1. carrie99

    carrie99 Registered User

    Apr 26, 2009
    175
    Yorkshire
    Hello again. T0ny's partner here, the one with the Alzeimer's. I am sort of feeling very guilty because I feel 100% fine today, although we have legal beagle stuff to do later in town. And I am not having to cope with all the paperwork and a full time job, it's all so topsy Turvey!
     
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Hope you have applied for disability benefits?? And let the council tax people know you are not working and have a diagnosis? And even though your partner is still working she must apply for carer allowance. She wont get money but will get other benefits.

    You may think all this is too early but it isn't!!

    Hope this doesn't offend but I wanted you to know about what you can claim for.

    xxTinaT
     
  3. Helen33

    Helen33 Registered User

    Jul 20, 2008
    14,697
    Hello Carrie

    Welcome to Talking Point. I hope that you will find the support from TP beneficial Carrie. There seem to be more and more people registering that have been diagnosed with Alzheimers.

    I care for my husband, Alan, who has a fronto temperal lobe dementia and I have found this site to be a lifeline.

    I will look forward to getting to know you and will see you around the site.

    Love and best wishes
     
  4. phredd

    phredd Registered User

    Mar 6, 2006
    1
    South Yorkshire
    Hi Tony.
    My husband was also diagnosed at 52 when I was in my mid 40's so I have some insight into what's going on in your life at the moment. I had little or no advice at that time and in some ways that did help as my view, now,is that altho there are somethings that perhaps you do need to think about (EPA's/Wills etc)it is possible to know too much too soon. Altho I have a fairly good idea of what is going to happen, like most people, I have no idea when that will be, so, again, like most people I concentrate on the here and now.You may well have much to concern you one day so forget about it as best you can for the time being.
    I would like you to know that 6 years on, altho I had to give up work some 2 years ago, we are still living a pretty full and active life. You could also be lucky and have a number of good years ahead of you.The key for me is to adapt. Easier said than done I know but to some extent it can be done.Yes, there are some things we used to do that we don't now equally, there are many things that we still do and you have to hang to that for as long as you can.There are times when I could cheerfully shoot both of us but those times go quite quickly (for my husband within seconds, slightly longer for me!)and at the moment there are not too many of these each day.What you absolutely must get, if you don't already have this, is some time for yourself on a regular basis. I don't have much of this, and when I do get it the temptation is, to feel guilty.Don't. Ever. Your wife will undoubtedly come first, second and last in everything you do as a couple and someone has to make sure that you have a little of that first, second & last for yourself. It will be that time that helps to keep you going both pysically and mentally when times are not so good.Sorry this post has been so long but hopefully it has helped a little. Good luck and keep posting.
     
  5. BarryW

    BarryW Registered User

    Jun 5, 2009
    23
    Lincolnshire
    #25 BarryW, Jun 7, 2009
    Last edited: Jun 7, 2009
    Hello Tony;
    I empathise with you and I admire your method for being practical although I suffer with dementia myself the only advice I can give you is to ressure each other everyday and cosolidate good times and take advantage of all the opportunities now so that you do not regret those that you missed. Enjoy and celebrate what times you do have together now and don't put anything off, live everyday as if it were your last and be happy because that is what life is all about, You are here to have fun and to learn and to benefit each other and enrisch those around you.Oh and when it all gets too much read Desiderata by Max Ehrmann.

    Desiderata


    [Go placidly amid the noise and haste,

    and remember what peace there may be in silence.

    As far as possible, without surrender, be on good terms with all persons.

    Speak your truth quietly and clearly; and listen to others,

    even to the dull and ignorant; they too have their story.

    Avoid loud and aggressive persons; they are vexations to the spirit.

    If you compare yourself with others, you may become vain or bitter,

    for always there will be greater and lesser persons than yourself.

    Enjoy your achievements as well as your plans.

    Keep interested in your own career, however humble,

    it's a real possession in the changing fortunes of time.

    Exercise caution in your business affairs, for the world is full of trickery.

    But let this not blind you to what virtue there is;

    many persons strive for high ideals, and everywhere life is full of heroism.

    Be yourself.

    Especially do not feign affection. Neither be cynical about love;

    for in the face of all aridity and disenchantment,

    it is as perennial as the grass.

    Take kindly the counsel of the years,

    gracefully surrendering the things of youth.

    Nurture strength of spirit to shield you in sudden misfortune.

    But do not distress yourself with dark imaginings.

    Many fears are born of fatigue and loneliness.

    Beyond a wholesome discipline, be gentle with yourself.

    You are a child of the universe no less than the trees and the stars;

    you have a right to be here.

    And whether or not it is clear to you,

    no doubt the universe is unfolding as it should.

    Therefore be at peace with God, whatever you conceive him to be.

    And whatever your labors and aspirations, in the noisy confusion of life,

    keep peace in your soul.

    With all its sham, drudgery and broken dreams, it is still a beautiful world.

    Be cheerful. Strive to be happy
     
  6. K Boy

    K Boy Registered User

    Apr 6, 2010
    12
    Oxford, England
    Hi Tony
    I've recently been diagnosed myself, and am really new to TP. I can already tell you this place helps - if only to ramble when you need to. There are so many really lovely people here, most with similar problems to ours. I've always worked with my wife, at least for the last forty years, and I've got to admit I've never thought about getting on her nerves (although she's had years of practice with my 'normal' self).
    Just never forget to say or show what you mean to each other, much the same as how you came to stay with each other up till now. These are still good days - enjoy them. It's amazing how a diagnosis like this can make you stop and smell the roses.
     
  7. chegrimandi

    chegrimandi Registered User

    Dec 8, 2009
    2
    london
    so my dad was diagnosed with early onset about 2 years ago. he's been ok up until about a month ago but he's really taken a nose dive in the last month or so - subsequently being admitted to hospital yesterday for observation after he fell & my step mum couldn't get him up off the bathroom floor.

    He's been getting epileptic fits as a side-effect & each time these have really set him back a lot. Lately the drugs for that seemed to have stopped working. He's had more fits/swollen face etc.

    The decline in the last month or so has been incredibly bad. My sister and I went to visit them this weekend. We probably got 3 or 4 intelligible sentences out of him in 24 hours. It's pretty devastating & unless he manages to recover a bit from where he is now then some kind of care home is suddenly looking like an imminent possiblity. He's 62 :(

    We also think he may have had a stroke. He is getting great local support from the local Alzheimers Society group so thank you for that. I'm pretty angry & confused.

    Meh.
     
  8. brizzleychris

    brizzleychris Registered User

    Jun 29, 2010
    10
    somerset
    hello tony

    Tony

    My wife is 52 and has been diagnosed with alzheimers now for 12 months. I am 55 and have retired to spend time together and finish work in three weeks. I dont know what the future holds and the finances are going to be tight but its a decision I made. It is a personal decision and everyone is different.
    I have so far avoided groups and the like as I have always considered it too depressing, my wife is still bubbly and enjoys life at the moment, but having had her six monthly assessment today I have been directed to a group locally especially designed for us younger carers / sufferers. It sounds like an informal get together for coffee and a chat so we may give it a go. The reason I have changed my mind is that having spoken to my wifes consultant there are clearly benefits that we may be entitled to that i hadnt even considered, such as reduced council tax and these are the sorts of issues discussed at this type of meeting and if it helps us enjoy the time we have left and a little more comfortably then its worth it.
    We also sought out a clinical trial which we do to try to help eradicate this awful disease, accepting it probably wont help us, but it does give us a sense of doing something.
    I have found the local memory service and my wifes psychiatrist extremely helpful and supportive and without her advice and guidance I would have been totally lost.
    Good luck.
    Chris
     
  9. Christinec

    Christinec Registered User

    Aug 8, 2007
    214
    Hi Tony,
    Just a thought. Has your wife had any drugs prescribed? Some people find these can make an enormous improvement in the condition.

    Visited my Mum last night and she was brighter than I have seen her for years. She seemed much happier in herself but not really like my Mum - far to upbeat and lively! Care staff told me one of her drugs has been changed and that they see a massive improvement in her attitude. Not saying that I think drugs help everyone but from posts here it seems some doctors not good at offering treatment.

    Also my local alzheimers group gave me great support and if you are not in contact with them already it might be worth getting in touch.

    Wishing you and your wife all the best.
     
  10. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    #30 MrsP, Oct 16, 2010
    Last edited: Oct 16, 2010
    Hi T0ny & Caroline

    I have no words of wisdom for you, it's difficult to plan a future when there is so much more uncertainty about it. As other's have said, it's the unknown that can be the most difficult part. I work in Cancer services, and I'm so used to people being given a prognosis which is more or less realistic. There is no such prognosis for Alzheimer's. Enjoy your good days and don't be afraid to weep on the bad ones. My thoughts are with you both.

    Kate x.
     
  11. amarie26

    amarie26 Registered User

    Dec 21, 2010
    13
    Sheffield
    My mum is exactly the same age and has only got recently diagnosed with it. I have found that she struggles to maintain a conversation, often forgetting words, she is incontient quite a bit. She can get agitated and upset easily esp if she doesnt get her own way. Little issues upset her greatly. She has become anxious however she does have lucid moments too and its important to try and make the most of them.
    We havent been told any limit just that she will get worse and it just depends on how how bad her brain is apparently. I feel sorry for my dad having to go through this as well, they are both so young. Try and keep your chin up because there is light at the end of the tunnel and I am sure your wife appreciates everything you do for her. Just keep being positive and tyr nad make the most of what u can. Good luck xxxx
     
  12. chegrimandi

    chegrimandi Registered User

    Dec 8, 2009
    2
    london
    so the update to this story was that sadly my Dad passed away just before xmas. He never recovered from this sharp decline & died in hospital. The demise was very rapid. All in all the early onset alzheimers took just 3 years to kill him. Very sad indeed. But just think about the good times now.
     
  13. Jo1958

    Jo1958 Registered User

    Mar 31, 2010
    3,724
    Yorkshire
    Meh, hi
    I am so sorry to hear your news, please accept my condolences on the loss of your dad.
    Take good care of yourself, with kind regards from Jo
     
  14. djray_b

    djray_b Registered User

    Jul 26, 2010
    2
    Aberdeen
    Too Young

    I think all the infomation you have had is correct There is no hard and fast rules regarding your ladies illness and the development of her illness. I too considered taking early retirement but my wife's consultant persuaded me to stay at work because I was still young and he could offer no garantee's regarding what was going to happen to her and more importantly when. If you can stay at work for as long as you can do so. Remember something very important You will still have to live after this is over. Put the decision off for another year. It wont do any harm.:)
     
  15. sunset22

    sunset22 Registered User

    Feb 17, 2008
    6
    Hi Tony,

    I know how you feel, it is as you say, a bombshell. My mum was diagnosed when she was 53. as you say, it's just little things to start with. with my mum, her spatial awareness was badly effected, so things like driving and directions. such a hard thing to tell sopmeone that has been driving for 25 years that they're no longer fit too, but saftey issues become more important than the argument, so if you do have to do that a little further down the line, don't feel bad, it's for the best. time scale wise, my mum is divorced from my dad, so it was down to me and my siblings to be there for her. i moved back and cared for her. she's just turned 58, and she doesn't know my name, but she still know's she knows me if you get what i mean? it's so different for everyone, so just do all you can like walking and exercise, things that keep her mind as stimulated as possible, the longer you can keep her the way she is, the better, just be as positive as you can. what i would say is get time for yourself when it all starts to become abit stressful, i didn't, and i wish i had. this forum is great for talking to people, and really use your family and friends that understand, alzheimer's cafe's and meeting groups, and when the time comes, look into restbite care, as it will mean you can stay sane and with your partner as long as possible. keep smiling, and making each other laugh, it helps, all the best xxx
     
  16. blue stocking

    blue stocking Registered User

    Mar 11, 2011
    1
    london
    Dear Tony
    My heart goes out to you.I wish I could say or do something to make it different. My mum was diagnosed many years ago - in the 1970s. She was 52 too and I was her sole carer.There were no friends or relatives to visit her. Little was known then. Her GP in NYorks had never heard of Alzheimers. Now I wish I had had all the advice about how to handle the sufferer that there is now. So gen up as much as you can and do not ever feel alone, or try to cope alone. friends say to me now that I was hard to help as i always pretended to be ok - mainly because i had young children , one very disabled. I shall be thinking of you and wishing you the very best.With love blue stocking
     
  17. Vivienne3

    Vivienne3 Registered User

    Jan 25, 2010
    57
    Cheshire
    re work

    My husband was 50 when he was diagnosed. I was in the situation where I wasn't sure whether to stop work and forget about the consequences or carry on and not be there full time for him. In the end after moving house to nearer the office I worked out that at my age I just couldn't stop work. The Social and Alzheimers specialist have helped with full time day care where I pay for the outings and petrol they use. This has been better for both of us as I have the money to be able to pay for things and my husband has a break from me and the carers take him out playing pool/bowling etc which would not really be an interest to me and I have a break which is needed.
    It is a personal choice but don't rush into a decision that you may later regret. You mention redundancies, would they offer part time work and then you can do both?
    Good luck
     
  18. small

    small Registered User

    Jul 6, 2010
    110
    harrow
    Dear Tony and Carrie,

    Welcome to this wonderful club. I have found so much help, advice and and support since joining TP, I am sure you will both find it helpful.

    My husband was 62 when first told he had some form of dementia, and 12 months on we're still awaiting a diagnosis as to whether its AD or some other dementia. You are lucky[!] in that respect because it can mean getting treatment, benefits etc. We feel in limbo, especially as my husband is in denial to a large extent!

    You have already received all the advice I would have given, mainly because I heard it here and they were massively right. Particularly with 'Take each day at a time" as there'll be good days and bad days, or in our case explosive flare ups one second, and then smiles and loveydovey soon after.

    Also no one knows how, why, or when the disease will progress. I take great comfort from the fact that my husband's first signs [in retrospect] were at least 4 years ago and yet he's still driving and enjoying his favourite things. Not least because we took the advice to make the most of our good times.

    Fond regards , Jackie
     
  19. persiansue

    persiansue Registered User

    Sep 24, 2010
    14
    gloucestershire
    Al;so 52 with dementia

    Hi,
    I was also diagnosed a few months ago at the age of 52, nand im sure your luvly wife like me tries to be strong for you which is very hard with what is going on in our heads.
    My husband is now retired and we spend time togeather but have time apart as well, i am al to aware that the time will come when i will be unable to be left alone even now i do daft things, but im syre she would want to remain as independant as long a spossible, even if like me she gives you frozen fish fingers for tea cus she forgot to put the grill on.
    I do many daft things but we just laugh about them.
    My heart goes out to you and your wife because its the hardest test we have had to face but its somthing we have to do togeather.
    I send you my luv and best wishes and if your luvly wife ever need to talk tell her to email me in the private box.
    Luv Sue
     
  20. Teresa1959

    Teresa1959 Registered User

    Jun 8, 2011
    1
    Hello Tony

    I too have just been diagnosed last month with early onset Alzheimers at 51 and yes, it hit me and my family like a bombshell. I had extensive tests and brain scans which revealed this diagnosis and only now am I coming to terms with it.

    I have had wonderful support from my local mental health team, a nurse visits me regularly and will continue to do so, I have also been booked into a group they run called cognitive stimulation therapy which I can recommend for Carrie if you have one in your area of course. I am soon to start on medication which the doctors have told me will buy me a few extra years. They were perfectly honest with me mind and told me the average length of time is approximately 10 years maybe a few extra years if I start the medication now and exercise my brain daily with the exercises they have given me. Also they advised my husband and I to sort out a lasting power of attorney and our wills etc sooner rather than later to make things easier for the family.

    The final piece of advice they gave me was to enjoy life as much as I can now, do everything I have always wanted and dreamed of now if I can and make the most of life. I have actually taken a positive step and started writing my bucket list. Sounds morbid, but no, it is actually therapeutic and is helping me and I have already started making plans of what I am going to do.

    I hope I may have helped you in some small way, just remember that there is always someone out there worse off than ourselves and you both must remain as positive as you possibly can. Make plans, do not be defeated, do not give up hope and talk to people, do not hide it or be embarrassed. I hid for the first few weeks and avoided people and it was not good for me. I now tell people and have overcome the embarrasing stage and feel much better for it, and hey, people do understand and are willing to help if they can.

    have faith, take care of each other and live live to the full.
     

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