1. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I looked back today at the records I kept for Jan in the first 3 years of her developing dementia. One forgets, over time, how things were.

    1994 was the year I diagnosed what was wrong with her, but the medics took another four years to come to the same conclusion. Took them several years even to contemplate that she might have dementia, because of her age. It would be another seven years until I lost her to the assessment centre and, finally, the care home where she now lives.

    At the time I had already started noticing Jan's reactions to her condition. Here are some of the one-liners I recorded at this time of that year:

    • Jan sensing ‘something’
    • forgetful
    • faint/faints
    • depressed
    • light headed
    • flustered
    • depressed about cooking
    • nervy
    • dreaming
    • taste (metallic taste in mouth)
    • funny feeling
    • memory
    • wobbly
    • head numb
    • lazy left eye]
    • stops breathing in sleep
    • edgy
    • flushed

    I think it is a good thing we don't have foresight. The practice of living day by day started way back then.
     
  2. hunter

    hunter Registered User

    Oct 20, 2004
    5
    Kent
    Hi, i am a new member here and have read a few of your messages about writing things down.

    It is my 85 year old grandad who has dementia/alzheimers and 10 years ago he was a very different man. Again he has his good and bad days but he is a shadow of his former self.

    What a good idea to write things down! I shall certainly start doing that. But what I want to do as well is (as I am in the creative and design field) I want to photograph, and video record more of my grandad. I want to have on record all the wonderful stories, jokes that he tells (repeatedly mind you, but I always think if you have heard a story a thousand times you never forget it)!

    Unfortunately all the things about nature, the war, his jobs, swimming, friends and family that he taught me, he has forgotten but it is now my place to re-teach him and others, and the best way is to write these things down - Thank you!
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Hunter

    My record keeping in this instance began because I felt that I should try and give the doctors every nuance of Jan's condition, since they seemed not to have a clue themselves. I hoped I might spark the odd thought.

    Since then the records have proved very useful, both as a reference for me, and as a means of recalling past events to help others.

    I have often wished that I had recorded the recollections of my grandparents - my mother too - before they died. These days I'd use video clips and DVD formats to store them, as a thing for their relatives to recall in later years.

    For my wife, I bought my first digital camera five years ago, and recorded all we did together so she would be able to see each day again, after the event. Those pictures have been a boon for me too, since she has been in care, because I can see her again, as she was, while cherishing the times I have with her, as she is now.

    I am also aware that, in doing all this, it is a distraction that enables me to stand back a bit from the personally destructive effects of the illness.

    Let us know how you get on!

    I'm pleased that some of my messages have proved useful.

    Regards
     
  4. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Brucie it's terrible what has happened to you and Jan, but in the way you share it all here and help and advise where you can, you have made my journey in dementia world that bit easier. The sort of advice you give out and the view point of having seen almost everything to do with this illness, is such a great help to me and I'm sure others here.

    Your story is overwhelmingly sad, yet you get on with it all and have also maintained a life of your own.

    Congratulations on being such a strong and sensitive person, I hope you are proud of how you have faced and carried all of this.

    Brucie, thank you for being who you are and doing what you do. You are an inspiration, as are all the carers here who are getting on with it quietly in stifling torment.
     
  5. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Brucie
    Thank you for your diary of events - my dad started showing signs of AD after a series of events, a close life long friend passed away from cancer and he also had a nasty fall off of scaffolding above a swimming pool - wished we had sued them now as he never walked properly again - and wouldn't go to the hospital then!!!
    He was only 61 then. Over the next few years he showed many of the things you listed, especially so he used to blank out. i kept a diary as he had such a phobia about doctors - this was invaluable to getting us help - i only wish i could get my hands on it again' but the CPN took it one day to show the doctor just before he was admitted and somewhere in the system it was lost
    I haven't kept a diary since then as dad's down turn was so major it was too hard coping let alone writing about it.
    I thank you for all your postings - you have a way with words that i can not match.
    regards Sue
     
  6. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Bruce
    I agree about recording details of time past.
    I did keep some on Family tree maker,adding notes to the family members.
    I regret however that I did not record some of the facts of historic value told to me by Grand parents and older members of the family.
    So much history is lost and to research it takes time.
    It took me about 4 years to research the history of a sea school,but is now saved in book form for those who come after
    Norman
     
  7. Chesca

    Chesca Guest

    Dear Bruce

    Hope Monday wasn't too bloody for you. Was thinking of you...still am.

    One of the things I don't understand is why doctors were unwilling to accept the possibility of the early onset. As I understand it (miniscule though it is) Alzheimer himself identified his first eponymous case of a woman in her early 50s. He also subsequently developed it himself (or his protege did) and able to identify what was happening to him was thus able to record some of his experience as far as his state would allow.

    Chesca
     
  8. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Ten years ago

    Dear Bruce

    I too started keeping a record of Margarets apparent departures from her nomal behavior. Unfortunately I didn't start as soon as I ought to have done. I knew there was something amiss two years before I started keeping a diary. Never the less I found the records invaluable in helping to convince the GP to investigate further.

    Since that time they have come in extremely useful in applying for Attendence Allowance, Blue Badge application, Council tax reduction and Carer Assessment,(still waiting result of that).

    I have found that officialdom is more impressed with a well presented written arguement than with just filling in a form. Besides I cannot always call to mind facts and figures when dicussing cases face to face. (As my mother used to say "I'm troubled with afterwit") Whereas if you have it written down other people can digest it at leisure and you can refer to it as required.

    It may seem a chore at times but it is well worth the effort.

    Barraf
     

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