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.
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.
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.
1992
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.
September
26 delirious
27 faints
October
3 faint
25 felt fluey—but it was not not flu
November
25 faint
26 faints
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.1994
December
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
2000
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.
December
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
2006
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.