A Carer's Diary

Brucie

Registered User
Jan 31, 2004
12,413
near London
Throughout Jan's illness I have kept copious records, in the hope that they may help in some way. I think I thought that I might record some key nugget of information that would miraculously transform her condition. Doesn't happen that way!

The main help has been that they have enabled me to remember developments in her illness, day by day. Otherwise things tend just to merge into one long nightmare, and one can't remember when this or that started to happen.

In 2001 I volunteered to keep more detailed records for the Alzheimer's Awareness Day that year. Some information I recorded was kept on the web pages for a while.

I happened to look at them again recently, and wondered if they might be of use to anyone using TalkingPoint - I found reading other diaries in 2001 to be helpful, if only in that I could compare our experiences.

I'm attaching one here. Just one day's worth. I tried to show what I was observing happening, but also my feelings and interpretations as well.

As I look back now I have dual feelings. Firstly, though I thought her condition bad at the time, I'd give my eye teeth to see Jan again being even that well [though I wouldn't put her through the confusion again for anything]. Secondly, I don't know how I managed to do what I did, day after day, month after month.
 

Attachments

CraigC

Registered User
Mar 21, 2003
6,630
London
Hi Bruce,

Many thanks for posting this. I immediately thought of my mum while reading these and her day to day struggle as a carer for my dad. I think that this account of yours and Jans experieces will touch many people and make them feel less alone.

Will definitely print these out for mum to read. Are more excerpts posted on the Alz site somewhere?

Thanks
Craig
 

karen_white

Registered User
Apr 21, 2004
72
Berkshire
I found it very touching for you to post a diary of what must have been a very hard time for you - only to get harder.

As Craig writes, I also thought of my mum, who was my Dad's main carer before he went into a care home and so many memories came back... Dad feeling abandoned and useless a lot of the time. He also needed constant re-assurance and if we left him for more than a minute he would be calling us and asking why we'd left him.

Thank you for sharing this with us.

Karen
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Thanks for your kind words!

I have some more days in the same format from the same week. They show much the same thing - the main point being that each day is quite inexorable and you can never walk away from it, or seek rest.

I will post the others up later, over the weekend.
 

Nutty Nan

Registered User
Nov 2, 2003
790
Buckinghamshire
Dear Bruce,
I, too, try and keep a diary on my pc, although time does not permit anything as detailed as your posting. I don't even manage an entry every day, but I find that my notes serve two purposes: firstly, the typing gets rid of a great deal of frustration - once I've got it off my chest, it all seems so much less irksome; secondly, it helps to recall the various stages or pinpoint when certain ups and downs happened or the pattern of mood swings and both positive and negative reactions.
Why are frail minds trapped in such strong bodies? It is so hard to watch a loved one's personality crumble away ....
Best wishes, Carmen
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Yes, I forgot that one - it is therapeutic to dump out these things, as well as serving as a record.

When Jan went into the home I changed to making basic records of how she was/is each time I see her, but more, started to record my own feelings each day. This is definitely therapeutic.

Just last week, Jan had a change of consultants. The new one, when she introduced herself, took off her shoes and crawled onto the mattress that covers the floor of the 'soft room' where Jan spends most of her time. All three of us were crawling around. Such a hands-on approach immediately impressed me.

She said that, as they are weaning Jan from Olanzapine, she would be interested to know if I had noticed any changes over recent weeks. Had I not kept records, I would not have been able to give a sensible reply. As it was I could provide a basic chart showing when she was more agitated, calm, or having more clarity. Records showed that she was no more agitated, but that she had less of the clarity days recently. I continue to record!

I'm an unrepentant record and document keeper of all sorts. Only last month I [reluctantly] threw out my Barclaycard statements from 1970....

;-)