Record keeping


Registered User
Jan 31, 2004
near London
I've said a few times that I'm a bit of an anorak about keeping records of Jan's decline. Well I have been reviewing some of them today in preparation for something I've been invited to be involved in tomorrow, and I turned up the following:

From the time that Jan, at 52, first showed 'real' symptoms of fainting frequently [there had been hints before but we had not twigged]..... took 18 different doctors eight years, on 57 visits overall [excluding some tests and memory tests], to get to the final diagnosis.

...Jan had EEG normal, EEG sleep deprived, ECG, ambulatory heart monitor, two MRI, CAT scan plus memory tests

..they explored menopause, sugar levels, diet, heart, psychiatry, psychology, alcohol [in desperation], depression

...there were 3 hospital assessments, Jan had what they thought was a cardiac arrest when having the ambulatory heart monitor fitted [what I called a faint because I was so used to seeing them] at the hospital and they got me to take her away asap because they couldn't handle it, she was admitted once because she used the wrong contact lens fluid in her eye [we just thought it was happenstance at the time]

And when I looked at my notes for the final two years she was at home, I can't believe I managed to keep on caring for her as we were both cracking up.

When I look back, I realise that Jan is now in the best place she could be - the care home, given her particular descent with this horrible disease. Won't be the case for everyone, and I wish I could have carried on at home, but when I see the notes of her distress and disability, I weep.


Registered User
Oct 17, 2003
Hi Brucie

It also took 5 years for Mum to get a diagnosis (Lewy Body) by which time I could no longer cope at home. Parkinson's and depression were initially diagnsed. But if I look back even further, I can remember mood swings and depression for 2 or 3 years before then but of course always put them down to something I'd said or done. I think because I didn't work when Mum first came to live with us (she was in good helath for a 73 year old) and then only part time and am quite a patient reasonable sort of person problems were well hidden or coped with. If Mum had still been on her own I think maybe the real causes and effects might have surfaced a lot sooner. Like you as soon as Mum moved into a care home I knew it was better for us all than me struggling away at home. Since then and Mum's death a couple of months ago I have had so many people comment that they did not know how I managed at home - well the truth is for a long time I don't think I did.



Registered User
Jan 29, 2005
First of all, Brucie and Geraldine, may I say that reading your stories ..... plus the many others here on this site .... well, I am filled with respect and admiration for you ..... for the selfless way you have done/or did what you could for your loved ones. I find myself hoping that I too can be as strong as you.

Our situation has been stunningly different. It was only last August 2004 that my Mum first mentioned my Dad's memory problems and his angry outbursts ..... she first visted their doctor to mention these concerns about September (I think) ..... Dad had a first set of tests at the beginning of this year and another set of blood tests just recently (interestingly, they discovered that some of his medications had been slowing down his heart rate and so that has been altered). It was at a formal house visit in February (a doctor and a nurse ..... Dad was tested separately and my Mum and brother were interviewed away from Dad) ... that the formal diagnosis of initial stages of dementia was given. Mum has been visited by a nurse a couple of weeks ago ...... Mum did wonder whether the notes taken in Feb were very accurate because the nurse's additude was as though Dad was much worse than he is. For instance, she thought Dad should be accompanied when he goes out and yet at the moment he quite happily makes his way round locally. Indeed, I don't think anyone else would really notice a problem. However, I am glad for my Mum's sake that it has been flagged up ....... because of the enormous problems we had with my father-in-law.

When my father-in-law appeared to develop dementia ..... well, my mum-in-law didn't say anything for quite a long time, although the family had begun to notice little odd things. It was me (now I think of it!!) that initially mentioned to my husband that possibly he was becoming incontinent and that he aught to have a discrete word with his Mum. Initially, everyone pussy-footed round ....... to be honest because no one wanted to be 'rude' or to in any way affront his/their dignity. However, it was difficult getting my mum-in-law to accept help ..... she did eventually when things were quite advanced ..... but by then ...... on dear!!! did we have a fun time with the Social Services in Haringey!! (And , by the way, my blood used to frequently boil at how condescending they could be to my mum-in-law ..... yes, she is elderly ....... but she's as sharp as a knife ...... and she put them in their place a couple of times!!)

I realise I'm not saying anything you don't already know ...... but it was heart-breaking seeing what dementia did to my father-in-law. He was such a kind, fun-loving man ..... and in the end was like a frightened child. We all did what we could to help my mum-in-law out ...... but Frank never did actually go into a care home. His last 'decline' I guess happened over about 8-9 months. By the end he could only walk round with a lot of assistance and he died from pnuemonia just over 4 years ago. So ..... from initial memory/personality changes to the end covered about 5 years I think.

I think where I feel apprehensive (if I think about it) ..... is dreading seeing my own Dad go through this. I know that no one here can do anything about that but I hope you don't mind me expressing that dread? Fear of what hasn't happened is completely daft ...... but there it is!

Still ..... we take one day at a time. On a plus note (I guess?) Dad has been quite happy about designating me and my brother as his attorneys ...... Mum thought it might not go down very well. I also find that this wake-up-call means that I pay more attention to asking Dad his opinion about things ...... and about things that happened in the past (I've always been interested in our family history but Dad has often been reluctant to discuss things) ..... so that's good as well.

Take care,


Registered User
Oct 23, 2003
West Sussex
Dear Brucie, it took over three years for my Mum too, even then, it was another year before they told us. Of course I had long sussed it by then. Why do they treat us this way? Love She. XX :mad:


Registered User
Mar 7, 2004
As most of you know I have only known Lionel for 10 years. Yes looking back something was wrong even then. I had suggested psychiatric councelling early on in our relationship, as I could see that something was wrong.
4 years ago someone listened, and 9 months later Lionel was diagnosed with A.D.

So now after just over 3 years they are questioning whether it could be Lewy Body.

Whats in a name. Like Bruce I always use the dementia umbrella.
Bless you all. Connie


Registered User
Dec 27, 2004
CONNIE how brave of you ,to take on lionel ,,suspecting something was wrong ,it must have been true love .as it must be for most partners who post here ,ANGELA


Registered User
Jun 23, 2004
Just to pick up on She's point - I was amazed that family/carers aren't told as a matter of course when someone is diagnosed with dementia.
In my grandfather's case, his diagnosis was given verbally, by his GP. By the time he got home, he had didn't even remember that he had seen the doctor...sounds like a bad joke I know, and I'm still shocked that it's what happened.