Keeping records


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.

1985 [Jan was 45 at this time]

The first time I recall seeing any sign at all of Jan being unwell was way back in 1985 when, on returning from a holiday in St. Lucia, we had about 30 hours without sleep. When we arrived home, I sat Jan on the settee and went across the road to our friends Brian and Viv, to pick up our mail.
When I returned to Jan she was asleep, but woke up with a start, then said “where am I?” then “who am I?” and “who are you?” She was petrified—as I was—and I had no idea what to do, so I told her simply to hold onto me. We stood there for a long time, holding on desperately to each other, until Jan slowly came back to normal.
This could have been jetlag, but it is so similar to her later illness that I now have my doubts.
There were no further episodes like that until her dementia really kicked in.

We booked a holiday in Kenya but only realised the number of jabs we would need during the month immediately preceding the holiday. We had all the jabs within a 2-3 week period.
One week before we were due to fly, Jan suddenly fainted. This was such an unusual thing that I called the doctor and asked whether she should begin her course of anti-malaria tablets, which we were due to start that day. The doctor said that Jan was more at risk from malaria than from fainting, so we started the pills.
Jan told me later that she fainted when we were on holiday, though I did not witness the faints.
The Sunday after our return, Jan developed flu-like symptoms. The GP felt this was not important.

26 delirious
27 faints

3 faint
25 felt fluey—but it was not not flu

25 faint
26 faints

3 faints
4 faints
5 head numb lazy left eye
7 dream
10 flustered
18 stops breathing in sleep
21 head numb, lazy left eye
24 forgetful
26 forgetful
29 edgy
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.

October 19
Speech still confused which may have been due to some long periods without breathing in her sleep—just like the old days of fainting.
In the afternoon, Jan just wandered, saying, “I can’t do anything”. Jan puts herself under pressure as there is no need to do anything, but when I point that out Jan reverts to “Why are YOU doing this? YOU know I can’t do anything and you KEEP asking me to”. There’s no reasoning with that.
Its all part of sundowning and the more one reassures Jan the more antagonistic she gets. We agreed simply not to speak for a while. A cup of tea a while later and she was as ok as she can be.

TV, or not TV, that is the question
Not TV is the answer. Jan can’t differentiate between what is on TV and what is not. She hates almost everything now. So we don’t watch TV. Programmes are not that good, but it would be nice to have the choice! I record programmes, then record over them, endlessly, with never a chance of seeing them.

More Thoughts
So cruel that Jan still looks so beautiful, like a mask on someone else’s body. Only the beauty remains among the ruin of everything else.
Trouble is, I see the beauty.
There are times I wish we’d never met, but I see her and my heart fills, even now.
Not so many years ago I realised that whenever I met Jan—say at a railway station, or just coming home—the rest of the world faded, leaving just her and me.

4 pain at back of head; scared
5 minor explosion ‘treat me normal!’; depressed—‘nothing left’; resisted medication
6 to Bruce—“you are a nice guy”
7 to Bruce—“there’s my boy”; “can’t afford a Christmas tree”; endlessly repeating “I can’t do it”
8 “don’t like tea”; later—kept apologising
9 weight 6st 10oz; “tea too hot”; “don’t like tea”; “can’t do anything”; at dinner, about food—“don’t know what to do with it”
10 couldn’t understand what a ‘table mat’ was
11 ‘smells’; ‘cereal too hard’; ‘orange too cold’
12 mild sundown ‘go home’; “wish I knew something”
14 explosion; insights
16 ‘want to go home’
18 very anti “you want to take everything away from me”
19 confused about a non-existent funeral; sundowning
21 ‘never had brandy butter’; later, everything ‘lovely’
22 confused and scared; wanting not to be so frightened to speak to people; slight sundowning; wanted to put pictures in dish washer
23 problems with Christas Eve mail
24 problems with all non mushy food
25 speech; comprehension
26 very anti; ‘nasty man’;”don’t touch me”; became very nice in afternoon
27 very edgy
28 insights; “don’t want to go”
29 confused; sundown

March 1st
St David’s Day.
I took in some Welshcakes I had made for Jan and she nibbled a couple of large crumbs. I didn’t take in daffodils because – well she wouldn’t be able to see them Felt bad because I should have done it anyway in case she could sense they were there. Just can’t seem to do anything right.
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.


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


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 ?


Registered User
Jan 31, 2004
near London
what are the first 8 line above is that Jan medication
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.


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.


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.


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.


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.