Does anyone else keep a journal or written record

[Agzy]

Over the years since Pauline was diagnosed with Alzheimer’s, and especially now, during the long days of lockdown, I find myself spending more time writing in my journal, ‘Our journey with Alzheimer’s ‘ and writing poetry in which I can lay bare all my emotions as well as giving vent in a way that uses my little grey cells.
I gather others write ‘Blogs’, which I think are for making public their story whereas mine, while saved on PC is not shared. Some of my rhyming scribbles I do make public here when the mood takes me or I feel others may empathise with or appreciate the subject. Other than that I find that although it helps my loneliness it can be a little depressive. Anyone else do this and what do you get out of it?

 

[Old Flopsy]

I write my thoughts in a notebook. If I am having a particularly frustrating day it helps me to offload thoughts that I might not like to share with others.

Then I shut the book and try to forget upsetting incidents.

I also record the humourous moments- like today when he wanted clean pants and was searching in my undies drawer for some- I soon directed him to his drawer- but then as he passes me the soiled pants I realised they were MY favourite pants- oh no!

 

[Jaded'n'faded]

I did. When mum was in the care home (nearly 3 years) I wrote a report after every visit so I could document everything. In total it came to 2 and a half large hardbound notebooks. It was certainly useful for recording any concerns with the CH or doctor visits, etc.

Mum died in November 2019. As I recall, the Dementia Diaries also record the progress/stages of her decline. I thought it would be useful to read it later so I could look back and reflect but the truth is, I can't bring myself to look at it. But I will one day and I'm glad I kept the account.

 

[Pierwalker]

Over the years since Pauline was diagnosed with Alzheimer’s, and especially now, during the long days of lockdown, I find myself spending more time writing in my journal, ‘Our journey with Alzheimer’s ‘ and writing poetry in which I can lay bare all my emotions as well as giving vent in a way that uses my little grey cells.
I gather others write ‘Blogs’, which I think are for making public their story whereas mine, while saved on PC is not shared. Some of my rhyming scribbles I do make public here when the mood takes me or I feel others may empathise with or appreciate the subject. Other than that I find that although it helps my loneliness it can be a little depressive. Anyone else do this and what do you get out of it?

Hi,
This very much chimes with me: My wife was diagnosd in 2014 and I kept a handwritten diary for 6 years and began to recognise it as one of my coping strategies. I then decided I would type it into book form which is now very much up to date as we enter our eighth year together (70+ pages!). When our journey is over I hope maybe to publish it in some form with a view to helping other carers anticipate and cope with their situations. I am also adding Tips for Carers and other formal educational inputs I have received along the way which have been helpful. I think your idea of adding a poetry to your experience and emotions is a lovely one, and good luck.

 

[thistlejak]

We wrote a daily diary on the advice of Carer's Resource . We contacted them when we had got to the point that we were really struggling with MIL & FIL , both had dementia. They said that it would help 'making our case' with Social Services as carers often forget everything that it going on when you are in 'Firefighter' mode and MIL could win an Oscar for her hostess mode. We continued this after FIL went into care as it documented MIL's decline and was very helpful when she had to go into secure dementia care for assesment and treatment.
I have read through it after MIL went into her care home and did wonder how we managed, but then again we all do, as we do what is best for our PWD in the moment.

 

[Grannie G]

I put everything, absolutely everything on TP but can`t go back to reading my Threads they are too upsetting.

I had two long-running Threads A life in the day ........ while my husband was alive and A new stage in my life.....after his death.

The support I received from TPers during those times saw me through.

 

[Canadian Joanne]

I also started keeping track on TP. I had numerous threads then started one called Mum and me. Unlike @Grannie G, I have been able to go back and read them. Yes, it can be sad reading but some of it can be funny.

 

[marionq]

I kept a diary from the start and fully intended to make it into a book or at least a self help manual. In fact when John eventually died I just wanted to run a mile from dementia. Occasionally I come across archived stuff in TP I have written and it causes me pain. I must and will move on.

 

[northumbrian_k]

I've got a 'dementia diary' which is a mix of my thoughts, some things that I have gone on to post on Dementia Talking Point (or started there and found their way to my diary) and some pretty banal records. It is not a diary as such but a long document in Word that has a column for the date and another one for observations. I started it in April 2017 but the first few pages are retrospective entries going back to 2010 when the first signs of my wife's dementia appeared.

I have used it a lot less since my wife went into permanent care and the Covid restrictions on visiting came in. It is a chronicle that is both happy and sad and now runs to over 83,000 words in 160+ A4 pages. I am grateful to the person who suggested doing it (in a DTP post) as it has at times been a great way of getting back my perspective. I did share some of it with my then Invisible, now estranged stepson to help him understand a bit more about his Mam's dementia but I doubt that he read any of it (it was entirely flattering about him!).

 

[jaymor]

I too kept a journal for 11 years, I stopped adding to it a few months after my husband’s death. It will be 5 years since his death next month. I always ended each days entry with how I felt that day, there were two of us on this journey. I’ve looked back on it a couple of times but can’t bring myself to delete it.

 

[nae sporran]

I make a few scribbled notes either writing significant changes or just noting the new normal. It comes in handy if I'm speaking to doctors or the practice nurse just to get a clearer picture in my head of what is happening over a week or two. It was also interesting just to look back on the previous year since all this started and reminding myself how things are changing. That part is sad of course, but it's easier to adapt and adjust when I can see a pattern. Maybe that's just me trying to cope.

 

[None the Wiser]

I’ve kept a diary for the last four years. It’s taken different forms. To start with it was handwritten and included how I was feeling and responding. It moved on to being notes on my I pad that weren’t quite so detailed, and now it’s in table form with columns for ‘general’; sleeping/night time; mobility/falls and incontinence, as these seem to be the main themes. It’s changed from a diary for me to offload into to a document that’s suitable to track the progress of the disease and to record what’s happened for when I speak to the mental health team, social services etc.
I find it very useful for looking back at to see when changes occurred, and if there are any patterns. It also helps me to consider how best to manage things. Really though I think because I have no control over the disease or how it manifests itself, it gives me the notion of control. It’s my way of trying to contain the present and work through the future.

 

[nick97]

I starting writing a journal of sorts - they're basically text files on my laptop where I write about anything - in about 2012... though it wasn't because of mum, as she was fine at this point.

It when I was reading them back though I realised that I first noticed in early 2017 that it was starting to become "noticeable" how much stuff mum was forgetting.

They do help... I remember reading a self-help book which said it's good to write down your brutally honest thoughts and feelings as it helps relieve stress. Though as a consequence, it means I would never dare show or share them with anybody else!!

 

[Dimpsy]

From the day my dad died in 2017, I wrote a daily journal.

Initially it was to keep a record of events that were unfolding with regard to my sister and her family and their treatment of mum and the discovery of how they had cheated dad.

When mum moved from one side of the UK to the other to live with us, my sister upped her aggression ten fold and involved the police, social services and anyone else she thought she could get on her side.

Nobody was, and it became a case of safeguarding mum with us.

OH and I were so stressed with the daily bombardments of vile texts / emails / letters, threats (but no face to face contact, they were too cowardly for that), that my nightly typing became not only necessary to keep a record of events, but cathartic.

Taking those inner feelings, dreads and frights and seeing them written on a screen and saved was almost like my nightly drug. The sense of release and relief saved my sanity during those desperate days.

The aggression abruptly stopped after two years.

We still keep a record of events,but these days it's a diary on the kitchen side to record things like shower/daily walk/ paracetamol/chips on the seafront!! A record for now and the future of good times ?

 

[Agzy]

Amazing how many of us do it and in my case it was the diagnosing physiatrist who advised it as the best way to keep my sanity and plot the hardships endured for the deniers I would meet and all so true..

 

[Palerider]

I Always document any events or concerns along with date and time and importantly names of those involved. It may seem like a chore, but worth its weight in gold if anything happens. The rest of my rhetoric is about dealing with loss and dementia and trying to make sense of it all. I think the darkness is always there whether we write about it or not. My hopes and aspirations have changed from keeping mum active and independent to one of ensuring she is safe and comfortable as her condition worsens, writing has helped to put that into perspective along with all the other things we experience and feel on this journey. How I felt when I put mum in a care home to how I feel now is reflected in how and what I write -sometimes dark and sometimes illuminating....