Keeping records

Discussion in 'ARCHIVE FORUM: Resources' started by Brucie, May 7, 2006.

  1. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    There have been many occasions when members on TP have reflected that, when seeing consultants etc, they can't quite remember when this or that happened with their loved one who has dementia.

    It is a very good idea to keep notes right from the start, or even from any point in the development of the illness, both for the medics, but also for oneself.

    Over time the form and amount of detail may change.

    As an example, I have included below some extracts from my diary of the development of dementia in my wife Jan.

    The first is actually retrospective as she had no other symptoms [that were enough to notice, anyway] for a further 6 years.

    By 2000 I had started to add my own comments and feelings to the diaries. It helped me then [no TP to talk to!] and helps me to understand my situation now, when I look back.
    I believe it is extremely important to note as much as possible, just in case it is useful to someone - the doctors, you yourself, family, in understanding what is going on, maybe even researchers at some time.

    I'm on page 354 of our diary at present.
  2. mel

    mel Registered User

    Apr 30, 2006
    Gosh'Bruce ..I wish my dad had kept some sort of diary ...would have been a great help.I'm now going to keep one for mum so that I can track her behaviour and find triggers to her worst moments
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Wendy
    Yep, i did that too, and kept the info separate [see below]

    Attached Files:

    • log.jpg
      File size:
      168.4 KB
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    Thanks for sharing that Bruce. I keep saying that I am going to keep a diary & have bit of paper all over the place ,just have to be more organised , was wondering what are the first 8 line above is that Jan medication ?
  5. mel

    mel Registered User

    Apr 30, 2006
    Hi Bruce....Thanks a lot that's really helpful
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Galantamine = Reminyl, an Alzheimer's medication
    Olanzapine = neuroleptic medication
    Lactulose = laxative solution
    Promazine = major tranquiliser
    Lorazepam = for treating anxiety

    Some of these are no longer recommended because of side effects, I believe.
  7. rummy

    rummy Registered User

    Jul 15, 2005
    Very helpful, thank you Bruce
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    Thanks Brucie
  9. cris

    cris Registered User

    Aug 23, 2006
    reading your records

    Hello Bruce. I've just reading your records, and it is a diary into your private life but although I know my experiences with my wife are no different to others it shows to me that I have to deal with it just the same, by that I mean it does'nt matter how caring or kind you try to be you will still be knocked for it. This morning I had "why are you doing this to me", and I see that your wife made similar comments to you. My wife has also told daughter nr.1 that I poked and pushed her and that she did not want to live with me any more, and said to daughter nr.2 that I pinched and twisted her skin. (I should'nt have to add this but I have never done anything like that). Future plans for retirement get binned. My wife is 58 (me 56) but I detected signs back in 1996. We managed to get to Australia 4 years running first time was the millenium Christmas / New Year. Fab country and great people and had hoped to go back, but well the travel is a bit daunting for me now, so we have had a better time than some. But reading the posting on the site just shows that people cope - I saw 1 lady has both parents diagnosed, and grandchildren not understanding, it also nice to see youngsters chosing to study the subject and I wonder were they affected at some time. But reading your article and others shows to me that my caring experience is no different.
  10. towncrier

    towncrier Registered User

    Oct 14, 2007
    keeping a record

    Bruce, you are so sane, and so good at helping the rest of us carers to stay as sane as possible.
    I have just started on the merry-go-round of trying to get some help from social services, and have started collecting my previous e-mails and discussions with correspondents and musings into a more accessible form, grouping things into new topic folders. Unfortunately I did not always date them as I went, but once they are all together in the same place it will be easy to arrange them into chronological order because of such refereences as "than before," "increasingly." and so on. I added a long screed to the form I was asked to fill in by the social worker from the initial contact group. A week later, it is clear that it has not been read properly because things I referred to have obviously not registered with them. So my record, started originally to enable his consultant to track my protege's condition, is now turning into a record of my coping alone, and later attempts to get some social support which will actually be helpful. It is also turning into a campaigning document abpout the unfairness of the provision for Alzheimer's patients and their carers and a record of local incompetence and inadequate provision.
    It doesn't do me much good to be swinging between anger and desperation myself, but I think my own self-respect and integrity would be compromised if I just took it all meekly; the experiences reported by some other Talking Point contributors have helped to stiffen my spine. I am beginning to belieeve that in some areas of the country only threats of suicide or solicitors might bring some real help.
    On a more helpful note, I have found the medical information website to be a good source of information on many topics, including, of course, Alzheimer's Disease. On the other hand, all the stuff I have read about it from many sources, stress that carers should look after their own health, and point out that help is there for them. Well I would like to see it available as a citizen's right, not as a matter of means testing, but now I am no longer part of the employed generation, I think I am no longer considered to a be a member of the community (except for continuing to pay taxes.
  11. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas
    i agree with you Brucie....trying to remember it all just sets us up for overload. That leads to memory problems for us...

    Thought I'd stop to let you in on my diary. Most computers have a program set up as a can choose month, week day..etc...

    I printed up a year of days, then put into a folder with rings. ON the page with the times I record what needs to be recorded DR's visits, when nurses or therapists will be by..etc...

    on the opposite empty page I write down what she eats and how much she drinks.....I alsi record when I empty the bladder that comes with her catheter and believe it or not if she says a word. We also record blood pressure and temperature and pulse when the nurses are here. If for some reason I do this I also record that. I have found that when I have had to talk on the phone about her or when we had to have her in the hospital it was very useful to the dr.'s.

    Before when I tried to keep it all upstairs I found myself more irritated and easily agitated because I could not remember a certain thing. I would also recommend that if your loved one is young enough to still have those times of the month to record them. You would be surprised at the routine in their ways starts to show up when you have their history at your hands. I also recommend recording when/how someone becomes agitated. I have learned that at certain times of the day and certain people are able to upset her more at different times of the day.
  12. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Like Brucie, I have kept diaries for the 5 years that my husband has had AD.
    Each time we had a Doctor or Consultant's appointment, I took the month's records with me.
    I even wrote down my feelings, how I handled situations.
    What the Consultant (who also did research into AD) said was he was learning more from a Carer.
    Even down to my very personel notes, I did not hold back on anything.
    Although Peter is now in E.M.I. Unit and in the last stage, when I visit I write down everything.
    Looking back on some of the diary entries, I am amazed how much we both went through as a couple.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.