1. Allan Stratton

    Allan Stratton Registered User

    May 20, 2005
    26
    I live in Cheltenham
    I am new to this site. unlike most of the writers, I am a sufferer. I find that my merory is very poor, but have ajusted my life with notes and mostly not caring if I forget, is there anyone out there that could maybe pass on some tips on the best way to cope as my illness gets worse, I would like to hear for sufferers not carers.

    Allan
     
  2. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi Alan
    I am 49 and recently diagnosed with Early Onset Alzheimers. I have two children aged 11 and 17 and I am a single parent.
    I survive the day by using a "memory book". This diary holds everything in it including what my girls need, my appointments, things to do list, where I am required to be for the children and much much more.

    I longer use the oven as I got sick of putting out fires :eek: , I now use the microwave.

    I also use post it notes to put on the dashboard of the car reminding me where I am going and why. When I get there I write a new post it note for the next destination and off I go. :D

    My diagnosis took a long painful time to happen and I just found out last week that my neurologist wants to do a brain biopsy.

    Do you have a partner, wife or suitable caregiver to oversee your actions? I dont unfortunately so have to set everything up to keep things flowing nicely.

    Stay in touch and stay strong Jeanette :)
     
  3. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Jeanette,
    Your organisation and determination are absolutely inspiring - your children must be so proud of you!
    Very best wishes!!
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Jeanette
    Wonderful the way you cope.
    Are you prescribed any medication for your problem?
    Best Wishes
    Norman
     
  5. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Jeanette and Alan.

    Welcome to Talking Point.

    Jeanette, I don't know if you are already familiar with a woman named Christine Bryden. She is an Australian who was dianosed with early-onset AD and was also a single parent. She has become a remarkable advocate for people with AD and has written at least two books that I know of.

    The Alzheimer's Australia web site has an essay that she has written entitled DEMENTIA DIAGNOSIS FROM AN “INSIDER’S” PERSPECTIVE: NO TIME TO LOSE available to download as a Word document:

    http://www.alzheimers.org.au/upload/ChristineBryden.doc

    For anyone wanting to read this article who doesn't have Microsoft Word, I have attached the article as a plain text file to this posting.

    One of the messages that comes across in her writing quite clearly, is the need for mutual understanding between those with AD and those acting as "care partners".

    Take care,

    Sandy
     

    Attached Files:

  6. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi Norman
    My neurologist tried me on Exelon but I had awful side effects with my asthma and also my bladder packed up so had to stop. He is now talking about starting me on Ebixa but all these medications for Alzheimers disease are not funded by the government in New Zealand and cost between $240 and $300 per month.

    Hi Sandy
    Yes...I have read Christine Brydens book "Who will I be when I die". I was talking to someone in Australia the other night who told me she has met a man and they have got married. This person had met both Christine and her new partner and said they were a lovely couple. I think it is highly unusual to actually meet someone after being diagnosed with Alzheimers and end up getting married.....he must be a wonderful man. Wonder if he has a brother ? lol ;)

    Hi Nutty Nan
    And I am so proud of them they are wonderful children and I am very lucky.
     
  7. West Kent

    West Kent Registered User

    Dear Allan,
    We are a group of people with Alzheimers. We get together on a regular basis and write a website which you can view at www.alzheimersforum.org. The point of this is to help ourselves and other fellow sufferers by exchanging our experiences, strength and hope. So we were most interested to see your message asking for responses from fellow sufferers. In fact, at our website we welcome emails from those with the same problems and in the near future we will include a message board facility dedicated specifically to the needs of sufferers. We would be delighted to correspond with you further through our website.
    We get more than enough aggravation from our dedicated carers at home without having them take over Alzheimer's activities as well as everything else!
    Also, we try to see the funny side of things - which you may have realised from reading the previous sentence.
    Cathie, Alan and John
     
  8. Allan Stratton

    Allan Stratton Registered User

    May 20, 2005
    26
    I live in Cheltenham
    Many thanks for all your replies

    I was so glad to hear that there are more people like me about, I am 57year old married with a caring wife, I forget things alot, but with the help of the drugs life is not too bad, I no longer get upset. it takes me longer to work things out but I get there in the end, I have a wonderful gadget called a Zire 31 which reminds me to do things it links to my computer and has made life much easier. Life is hard for my wife as in our 37 years of married life I made most of the decisions because she liked it that way. now the boot is on the other foot she finds it hard going. My main carer is a 3year yorkie by the name of Katie, she stays with me all the time and is always in protection mode, we play ball all day she never tires.
    Once again thank your all for your replies
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
  10. Hope you don't mind me butting in here folks.

    Neil, 33. Student Nurse.

    I want to work in 'dementia care' and would like to say how informative this thread is... I like to read the perspectives of people who actually have the illness rather than just read all the 'scientific bumph'.

    Please do not think I am being patronising when I say that the info. you have shared is invaluable and I feel will help me work with people more effectively... I'm not here simply to get info. as I know that it isn't beyond the realms of possibility that myself or someone close to me may very well have to address certain issues raised here on a very personal level at some future point.

    The more I learn about these things, the more I feel I can do to help and thank everyone who posts... who knows better about 'what you are going through' than yourself.

    Apologies to all if I have 'invaded' here... but I just want to say again how interesting I found this thread.

    My best wishes to you all.

    Neil.
     
  11. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi Neil

    I certainly don't feel that you are "butting in". We are all here to learn from each other and if I can help you gain a better understanding of what it is like to have dementia then that's good. If you have any questions please feel free to ask.

    :) Kind wishes Jeanette
     
  12. mailife49

    mailife49 Registered User

    Oct 21, 2004
    34
    uk
    your letter to jeanette

    Hi Neil,

    I just wanted to say to you that I could tell you how it "feels" to have this memory problem - but from my mother's point of view - as we , her children(??!!)all grown up`I should hope, were very much with her , all in our own special ways, which gave her more variety...as we're all quite different from each other.

    I know my mother was almost in tears one day in the summer (I'd go over every year in summertime, and for as much as a month more in the more recent years, when my father needed extra help (emotionally and physically) - he was exhausted but still in love with that SO LOVEABLE person , dear Meg, she's been in a nursing home since October last............ after years of being looked after by a string of carers 24x 7 (in the last 2 years) ...........well there was my lovely mother in a stew saying to me, why am i forgetting things - what does it mean.....? she knew I wouldn't say anything to anyone else (the youngest!) .......... you see things would go missing and my father tried to enlighten me, as being over here in Spain, makes it seem so unreal I suppose.... well I just kind of said to my mother that we all forget things and we can't always help it, and she shouldn't feel so bad.......... then it was mother trying to do the dishes, bless her - we should all realise that they must be allowed to do that, makes them feel good, but you see the fragility of them as they give you a knowing look, as if to say, thank you , for letting them do the dishes... you're heart then bleeds a little.

    And to think, I'd get annoyed when things went missing at the beginning, as the word dementia never cropped up, and I'd been living abroad and was rather slow to click on.........sometimes after a lunch at the local hotel up the road, we'd walk down the lane together, and then my mother would burst into an attack at me, and then , yes then I realised that this was serious.........out of the blue, you know , for no fathomable reason.........it's as if they have to explode in order to feel a little sweetness afterwards, and a faltering sorry would come out like a child almost.........I really felt that my mother was trying to get over her fear and frustration , slowly but surely her power with words, poetry was being eaten up and it was as if she had to attack her nearest and dearest, as she did with my father, who she adored and he too.............but his lungs gave up and the progress of the disease got worse......

    I couldn't believe it when I found myself showering mother and being quite the little nurse, and joking that I didn't feel I should be seeing some parts of
    her, which amused her!!

    Now my mother has recovered from her hip op brilliantly but trouble is she races around , as she's also lost a lot of weight.........this my mother, the artist golfer, the one to make other's feel good about themselves, the one who gave, gave gave and always said to me, "if I can help somebody along the road, then my living shall not be in vain".

    Neil, I am writing this especially to you , as I know and trust your particular interest in this disease and I think it's lovely that you don't just want all the scientific jargon, quel ennuie as the French say!!

    I haven't forgotten about your site, i've been into it, snooping around and liked the ground!! so will pop into it at another date. You're quite a man, Neil!!
    oh, but isn't it strange how my mother (91) didn't want to listen to the village kids singing, as she normally (!) would have loved that, but I guess the awful sadness of it now means nothing, as the furniture in her house that she found in auctions, she loved buying antiques and so on, suddenly meant nothing either, and she said to me (in her own house), things, things things, who needs them, then she told my aunt not to bring flowers any more, isn'n't that strange? and to my sister she said recently, why take me out somewhere when I've nowhere to go back to, well my poor sister was taken aback at that, as she'd just settled in a bit, they thought, at the nursing home (17 inmates there only) ....so now it's my turn, this summer to see my mother in her new surroundings and to know that neither she nor I will ever go back to the lovely family house........but I still suspect she goes back in her mind to their first family home with her mother and father, so maybe she wasn't referring to "OUR" more recent family house.........

    It's all too sad, and I want to just be able to pick her up in the car and whisk her off somewhere where we can be intimate.........you know mum and daughter , with no carers for a while...........we spent so many years sharing my mother with the carers, one of whom had the great insight to say, there'll come the day, Mary anne when you'll resent carers being around (she was the one who was there just till my father died and not much more later............. and my mother enjoyed her extrovert ways, so did I, she'd literally skip along the high street, and we'd giggle at that as she was quite hefty ..........she'd always say to my mother, if I don't see you through the week, I'll see you through the windae! scots you know, well how we'd laugh....and my mother , at that stage, could still repeat that or be critical,,,,that she was good at!!!!

    Maybe one day there'll be a way of reversing all this loss of memory, but we just feel that we've lost the essence of our mother, the vital spark, the one who loved Dad's Army, and The Two Ronnies and would have everyone in fits copying them and so on..........

    Neil, you'll make a fine nurse, well you already are aren't you, and laughter is the best therapy, so my mother claimed, she can still manage a knowing smile............

    well, that's all for now,
    hope you're well

    give a thought to me in the summertime when a big lump comes to my throat on seeing my sweet mother!!!!!! haven't seen her for a year almost - it's too sad.

    all the best,
    maryanne
    alias mailife49
     
  13. Wow... now those are just two sentences you put that I wish to highlight - I can't say how much I thank you for your kind words.

    I will indeed be thinking of you and your mother when you see her.

    Can I just say that I really do appreciate what you have shared here on what must be quite a painful and personal experience... as I've said before, I know 'all the theory' and the jargon etc. and some of my own experience (of working/caring for people on an approx. 7.5 hour shift) - but I've never had to do it 24 hours a day.

    As to care homes/homecare etc. - I really do admire people who realise that they can no longer cope and admit that it's time to get more help... even though the ignorant neighbours come out with the "She's bunged her mother in a home... after all she's done for her" etc. type of comments.

    The above is an example of what I'd like to challenge... to make people aware that the families AREN'T waiting to 'shove' their beloved relative away a.s.a.p.

    Having struggled to help maintain peoples' quality of life... to maintain their dignity... to empathise with them... to listen to them when they're struggling to express themselves... and just to simply be there - all these things I have done, but never 24/7 and I do not know how people can cope... they are the real heroes in this world.

    Sorry if this is all coming out a bit garbled... but I'm trying to speak 'from the heart' here.

    I had two relatives when I was a lot younger who had dementia issues and I didn't know anything about the condition... My Mother and brother visited regularly and I didn't.

    And now I regret this.

    Now I am able to understand, and want to learn as much as I can, and to help... I only wish that I'd have had more information when I was younger... but the past can't be changed.

    As to the future? I do plan to make a difference in any way whatsoever, no matter how small.

    Enough from me for now - thanks once again for your reply.

    :)

    N.
     
  14. Allan Stratton

    Allan Stratton Registered User

    May 20, 2005
    26
    I live in Cheltenham
    Selected Memory

    Why is it that sometimes I remember things quite well, I start feeling that I am on top of things. then you find you have done something such as write a letter on the computer, it gives you the time a date and you just can't remember doing it. My wife doesn't know wether to tell me I have forgotten something, or leave me in my own happy world. I try to keep my mind active doing sudoku puzzles also spend lots of time in the garage making bird tables, I know this gives the wife a break so she can relax. I am off to London on the 9th Aug. to a meeting at Alzheimers headquarters, I gather they have asked a group of sufferers to give their opion on web page, I will let you all the outcome.

    Allan Stratton
     
  15. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi Allan
    Yes I know that feeling well. When I forget things I always prefer for my daughters to let me know, not keep it from me. I suppose it helps me realise when I am having a good day and when I am having a bad day. Some days I do really well and have reasonable clarity of thought and then other days (like the last 2) the fog descends and it becomes a huge struggle to get through the day. Are you on any medication? I have recently started ebixa and I am not sure whether it is helping yet.
    Jeanette
     
  16. Allan Stratton

    Allan Stratton Registered User

    May 20, 2005
    26
    I live in Cheltenham
    Medication

    Hi Jeanette,

    I am taking galantamine tablets 12mg twice daily, as I am a diabetic I get all medicine free of charge, I have felt much better since taking them, but when I ask my wife if she thinks I am better since taking them, she says some days I am better others worse. for some reason I didn't totaly believe her, but when I saw things on the computer that only I could have done and I can't remember doing them, I then think she must be right. Could be that sometimes ignorance is bliss?
    You seem to keep on top of things and have my admiration.
    Allan
     
  17. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi Allan
    "Ignorance is bliss". Sounds like something my neurologist thinks when I walk through the door........ :confused: I am having a SPECT scan next week on my brain to map decline.

    Don't worry too much about the mystery computer thing.....It sounds like you are doing well and keeping mentally active and that is all you can do. Keep fighting this terrible beast and stay positive. I was reading some research last week that said a neurologist, Dr Karen Ashe, at the University of Minnesota, has actually succeeded in reversing the damage done by Alzheimers in mice.
    Jeanette
     
  18. Allan Stratton

    Allan Stratton Registered User

    May 20, 2005
    26
    I live in Cheltenham
    Keep on taking tablets

    Hi Jeanette.
    How are your tablets suiting you, I know with mine the first lot, don't remember what they were called, made me feel sick. the second and the ones i take now took some time to take affect, but now I feel they are doing me a lot of good. I was glad to see you have 2 daughters so you are all ladies together, I have one of each my son's a policeman and I see him about 3 or 4 times a year, on the other hand my daughter comes round most days, she drops her little dog off every morning. She gives a lot of support to my wife, Have you had your scan yet, not sure what they can see, but the facts are they could find a cure tomorrow. so let's all have happy thoughts.
    Allan
     
  19. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi Allan

    I am just not sure whether the Ebixa medication is working or not. I have just started my second packet so maybe I need to be patient. The thing I struggle with is that I consider I am still in the early stages and this medication has not been proven to help people in the early stages and it is considered to be more beneficial for middle to late stages.

    I am having the SPECT scan this coming Wednesday and what they are looking for is an area of the brain that is inactive with low or no blood flow. If they find such an area they will go into the scalp at this point and take a sample of the brain to look for evidence of Alzheimers. Because I am young to have dementia (49) my neurologist is trying to verify his diagnosis.

    How long did it take for the doctors to diagnose you Allan? Was it a long process?
    Jeanette
     
  20. Allan Stratton

    Allan Stratton Registered User

    May 20, 2005
    26
    I live in Cheltenham
    It takes some time

    Hi Jeanette

    I also am in the early stages, I don't think it took too long for them think I had alzheimers. what happened to me was my daughters car had problems, so I took her to work one day, she wanted to stop at the cash point at the supermarket, as I was driving there suddenly I couldn't remember the way, she had to tell me. after leaving the supermarket she had to direct me to her works. I was born and lived 90% of my life here in Cheltenham, so realised something was wrong, my wife then told me that she had been concerned about my memory for some time, after seeing four or five doctors and it could have been a year or more till they said i had alzheimers. Regarding the tablets I think it takes a few months before they work. I had 2 brain scans taken a year apart and tests taken a the same interval, but they didn't perform any surgery. May I wish you all the best for next week.

    Allan
     

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