Keeping a Diary or Blog

[Elle3]

Hi everyone, it's not often I post here, but I have found myself visiting much more often over the last month or so as things have been getting a lot worse with my dad. He has undiagnosed dementia, there is no doubt about it but he point blank refuses to see his GP to get a diagnosis. I've spoken to the Alzheimer's Society and they have said there is nothing that can be done unless he is diagnosed. Although they did advise me to register as a Carer and write to his GP. When I registered with the Carers one piece of advice I was given was to keep a diary so I could record things as they happen with my dad, as you can very quickly forget or not see the progression of the disease.

So last week I started a Blog,( I decided a blog would be better for me than an actual diary). I have to say how therapeutic this has proved to be just writing things down and has made me think back to when I first started to notice my dad's forgetfulness (over 3 years ago) and to all the increasing 'events and issues' that have occurred this past year and now, some of which have now made me laugh but were very stressful at the time. I was just wondering if anyone else does anything like this?

 

[Margi29]

Hi Elle
I didn't keep a diary when dad was diagnosed with vas d and alz. I really wish I had, you forget so many things. Now I am in a sense keeping a diary of sorts on TP.

I sneaked on the thread, Can I ?? Should I ?... last year and must say it's been a great help for me, if only to rant away or ask questions that others may have come across

I feel it will help me see progression of this cruel disease ( either slow or fast )

Also knowing others are out there knowing exactly what I'm going through helps, some are in a far worse position than me, in fact some posts make me cry !!

Dad passed away and now I'm on this long journey with mum who has also developed mixed dementia, so I would say yes, a diary is a good idea.

 

[jen54]

I have been keeping a diary for some three years now,started when dad was at home under palliative care. I continued it with mum, it is a good idea, as over time I forget the odd things,or blip,problems that arise, plus I can not down practical things.
I feel now I have been contacted by social services it will be invaluable to make lists,or remember things mum is doing,or not doing, plus I hope I can refer to the diary name a list and not forget how bad mum is at times to tell gp etc, otherwise a few good dats and I forget a lot of what she says,does
At last I am expecting the Dr to visit mum later today, after a catch 22 situation over the phone where ss said they couldn't do assessment without mums consent..ringing her and het refusing..them then telling me they couldn't go further without gp ..and again him needing mums consent,..again them ringing her and her refusing..
But the ss woman then rang gp and put pressure on him to visit , the pretext being I said mum had said yes to the idea of getting gp the other week after a fall..of course she has forgotten,
It is just so problematic that help relies on the pwd giving permission..mum hasn't a clue she has dementia,no diagnosis as she point blank hasn't wanted to go to Dr for three years now, so round and round we have been going

 

[Elle3]

I have been keeping a diary for some three years now,started when dad was at home under palliative care. I continued it with mum, it is a good idea, as over time I forget the odd things,or blip,problems that arise, plus I can not down practical things.
I feel now I have been contacted by social services it will be invaluable to make lists,or remember things mum is doing,or not doing, plus I hope I can refer to the diary name a list and not forget how bad mum is at times to tell gp etc, otherwise a few good dats and I forget a lot of what she says,does
At last I am expecting the Dr to visit mum later today, after a catch 22 situation over the phone where ss said they couldn't do assessment without mums consent..ringing her and het refusing..them then telling me they couldn't go further without gp ..and again him needing mums consent,..again them ringing her and her refusing..
But the ss woman then rang gp and put pressure on him to visit , the pretext being I said mum had said yes to the idea of getting gp the other week after a fall..of course she has forgotten,
It is just so problematic that help relies on the pwd giving permission..mum hasn't a clue she has dementia,no diagnosis as she point blank hasn't wanted to go to Dr for three years now, so round and round we have been going

Hi Jen54, your story sound very similar to mine, although we haven't involved SS yet as I sort of feel like I am betraying him if I do and he point blank refuses to see a GP saying he is fit and well and can walk for miles, plus he thinks they are a waste of time. He is so happy in his own little world, pottering about, walking (lots of walking) and going on the train (which is proving the most problematic). The Police have been involved a few times now and have brought him home in the middle of the night, but yesterday the British Transport Police brought him home in the afternoon as they were concerned for him as he didn't seem to know where he was, he was quite a long way away and at a place he doesn't normally travel too. Even the Police officer tried to tell him he needed to see the GP, but she got the same excuses as I get and they could see they were fighting a losing battle. The blog diary is really helping me record everything that happens though and one day I hope I find a good reason for him to see his GP. Take care. Elle3

 

[Perfectdaughter]

I have been keeping a diary - I call it chronology notes - since 2012 of stuff that happens with my father. He was diagnosed with mixed Alzheimers and vascular dementia in 2014. It has been so useful in discussions and negotiations with his GP, the district nurses and at the hospital. His medical files (he's 93) are huge and disorganised and I can just refer to my notes and give the medics the information they need, with dates, which they like.
Now my father has live in carers and they write a few lines about each day in a notebook. They were reluctant at first but we all find it useful when we have to refer back to what happened/how my father was/when medications changed. Otherwise it becomes a blur.

 

[Elle3]

Hi Elle
I didn't keep a diary when dad was diagnosed with vas d and alz. I really wish I had, you forget so many things. Now I am in a sense keeping a diary of sorts on TP.

I sneaked on the thread, Can I ?? Should I ?... last year and must say it's been a great help for me, if only to rant away or ask questions that others may have come across

I feel it will help me see progression of this cruel disease ( either slow or fast )

Also knowing others are out there knowing exactly what I'm going through helps, some are in a far worse position than me, in fact some posts make me cry !!

Dad passed away and now I'm on this long journey with mum who has also developed mixed dementia, so I would say yes, a diary is a good idea.

Hi Margi29, Sorry to hear about your dad passing away, it is so tough and I feel for you having to deal with this awful illness twice.

I did wonder if I could vent here about my dad, but it is almost every day that something happens, whether its confabulation, sundowing, being brought home by the Police etc at all hours or my husband and I having to get up in the middle of the night and take him home so I thought my own blog/diary would help. It is easy to deal with things at the time and get stressed but then you forget about them and deal with the next thing, so the blog is really helping me keep track and make sense of it all. But being on here and reading other posts is also helping me learn how to help and deal with my dad, I too cry or sometimes laugh when I read posts and it also makes me realise things could be a lot worse. Thanks for replying. Take care. Elle3x

 

[Perfectdaughter]

" It is easy to deal with things at the time and get stressed but then you forget about them and deal with the next thing, so the blog is really helping me keep track and make sense of it all."

That describes exactly how useful the blog/diary is. When stuff happens and it all piles up it is easy to forget about the previous crisis, because you're already in the middle of the next one and dealing with it.
I hope you can find some way of getting your father to the GP - I was able to accompany mine to his annual medication review (on the pretext of helping him in case he couldn't hear or remember what the GP said). I wrote to the GP beforehand with all my concerns about my father's memory and it was at that point that we got the referral to the memory clinic.

 

[Tin]

Used to have a daily diary, but after 3 years dealing with Dementia, I now only keep it to record my mum's behaviour especially her bad days, it helps me to see if there is a pattern and plan if I can do anything. It goes with us whenever we have a gp or memory clinic appointment. Don't have to rely on my own memory when they ask how things are going.

 

[Shedrech]

hello Elle3
I'm a bit surprised that the police haven't yet made a referral to SS themselves if they have been involved several times - that alone would make me want to contact SS to get him flagged up as a vulnerable adult at risk
it's good that your dad is happy in his world - he does, though, live in and interact with the world at large and it's a dangerous place at times - have you got him a tracker so you can tell where he is?
does the GP know about his travelling and getting lost? might you ask the GP to pay a home visit (about the flu jab?) or could you make an appointment for him, tell him it's for you and ask him to come with you or just be popping in on your way to having a coffee somewhere closeby

 

[saskia]

Forgive me for pointing this out, but allowing a PWD to wander is like allowing a 6-8 year old child to do the same thing. I would involve SS now otherwise you may find someone else involves them if your PWD is in or causes an accident or is lost for some time. Unfortunately a PWDs sense of risk, ability to hear or see and process this information is severely diminished. I really don't want to be driving when an old chap walks out into the road as he has forgotten to look!

I am sorry to be blunt, but it needs saying.

Yes I have experience, I should have stopped my Mum driving before she had a no injury accident. Mum also wandered, fortunately in the garden only as the carer stopped her leaving the property for the above reasons.

Maybe time for a review of his meds, charge the locks and more security, plus an assessment by SS for PWD and carers?

Having just had experiance of mum wandering looking for her lost (i.e dead) dog in the middle of the night & police being called .....

the next day we had an emergency meeting with the Mental Health Team - the CPN pointed out that mum still has capacity -you cannot stop a PWD going for a walk, the CPN said the more calls the police get, the better, as this builds a better case for them!

my mum, as i suspect Elles dad, is still living at home and getting by quite well day by day. I work FT and my mum has point blanked refused any type of care -again, this is her right.

I would add Elle - - this is something the police are very used to - in fact the lovely police lady said dealing with dementia pateients is the nice part of her job instead of dealing with thugs!

& Yes - i have kept a diary for about a year now -helps me so much.

 

[Samantha1977]

Hi Elle3
I have actually been advised by the social worker to write a diary. I have bought a book and have been struggling to write in it. I guess I am torn between what to put down without sounding like I'm moaning. But now that I read your post about a blog...I am very interested. Where do you do it.

 

[LadyA]

I never wrote a blog- wouldn't know where to start - but I kept a computer diary of my late husband's condition, noting any changes, deterioration, behaviour problems, illnesses etc. Then before his appointments with the consultant every six to eight weeks, I would send him the latest "instalment", so he would know the situation and how things were progressing, without us having to discuss my husband in front of him. It also gave the consultant time to have a think about any medications and any reviews he wanted to do. It's an excellent idea to keep some sort of diary, because as time goes on, you forget details, and time blurs when you are exhausted, and it's good to be able to go and check.

 

[Amy in the US]

I absolutely wish I had done this, on the computer. I did have a notebook where I kept track of all of my mother's medical information--this was pre-dementia diagnosis, when she had a string of medical issues (many of which I know now were symptoms of, or exacerbated by, the dementia) and a slew of doctors and I was trying to keep track of things because I couldn't remember anything!

But it would have been handy to have it on the computer, so I could have emailed/faxed/mailed a copy to the doctors ahead of appointments, and then printed another couple of copies to take with me.

Excellent advice I've seen here on TP is to send info to the GP's or memory clinic's or consultant's office ahead of time, so they know what is going on without you having to talk in front of the PWD (person with dementia). Then take two more copies with you, and slip one to the receptionist/nurse when you arrive, and have another one in your bag in case none of those copies got to the doctor.

I always used to sit next to my mother, but with my chair slightly pushed back, so I was out of her line of sight. Then I could nod or shake my head or even just make a facial expression, to tell the doctor/nurse/whoever that what my mother was saying was or wasn't correct, but my mother didn't know.

My mother also never wanted to go to the doctor, but she had a "thing" about being able to get her medications refilled. So I would say, I know you don't want to go to this appointment, but if we don't go, you can't get your medicines, that's what the doctor's office told me. It worked every time. Or if she was really reluctant, I would tell the doctor, and he would ring her and ask her to come in, which also worked.

Other tactics I've seen include not telling the PWD that you are going to a doctor's appointment for them, but rather for you, and they are just going to keep you company (with the doctor's collusion ahead of time). Or don't tell them at all-just take them. Or have the doctor's office ring and say they must come in for a routine: well woman check, annual visit, flu jab, blood pressure check, vision check, tetanus booster jab, weight check, blood sugar check, anything like that, or just an appointment to stay on the surgery's books, and then blame it on the NHS, the doctor, the practice manager, that new nurse at the surgery, or anybody but you.

I found out that if you wait for the person with dementia to agree to something, you will never get it done--at least, in my situation. So I learned to just get it done, with or without her permission or willingness.

It could also be tricky to tell her about things too far in advance, or at all, sometimes.

It's definitely not easy!

 

[jaymor]

I kept a daily record using Microsoft word. At the end of the day I typed up the day and was always careful to add how the day had affected me.

I mentioned my daily logs to my husband's CPN and she asked me to print them off for her ready for her visits. These she passed to my husband's Consultant so every time we went he was up to date with everything and he had no need to ask me questions in front of my husband. He would always look at me, fiddle with several sheets of paper in my husband's file to let me know he had received them.

My husband passed away 10 months ago and I still have them on my laptop though have not looked at them for nearly five years, from the time my husband went into nursing care. He had Alzheimer's for 11 years and I have around 5 years of our daily life recorded. My husband had very challenging behaviour, never hurting anyone but himself. Some of it is not easy reading but it happened, it was a part of our journey.

 

[Elle3]

" It is easy to deal with things at the time and get stressed but then you forget about them and deal with the next thing, so the blog is really helping me keep track and make sense of it all."

That describes exactly how useful the blog/diary is. When stuff happens and it all piles up it is easy to forget about the previous crisis, because you're already in the middle of the next one and dealing with it.
I hope you can find some way of getting your father to the GP - I was able to accompany mine to his annual medication review (on the pretext of helping him in case he couldn't hear or remember what the GP said). I wrote to the GP beforehand with all my concerns about my father's memory and it was at that point that we got the referral to the memory clinic.

Hi Perfectdaughter
Thanks for your reply, I have tried every pretext in the book to get my dad to the Dr's but as he is so physically fit and not actually 'daft' nothing works. I've even tried walking past the place with him and saying oh lets just pop in here to get something and he looks up, sees its the Dr's and tells me no chance and runs off and I mean literally runs off, lol! Without his consent we have our hands tied. Take care. Elle3x

 

[Elle3]

I have been keeping a diary - I call it chronology notes - since 2012 of stuff that happens with my father. He was diagnosed with mixed Alzheimers and vascular dementia in 2014. It has been so useful in discussions and negotiations with his GP, the district nurses and at the hospital. His medical files (he's 93) are huge and disorganised and I can just refer to my notes and give the medics the information they need, with dates, which they like.
Now my father has live in carers and they write a few lines about each day in a notebook. They were reluctant at first but we all find it useful when we have to refer back to what happened/how my father was/when medications changed. Otherwise it becomes a blur.

When I started the blog I was lucky enough to have a list of all the dates when the 'main/worse' things had occurred, I'd been keeping this list for the last 2 years which helped me greatly catch up with things and put a bit more detail about them on the blog. I think I will also continue with this list as it could prove useful if I ever need something to refer to with a GP or SS, so thanks for that advice.

 

[Elle3]

Used to have a daily diary, but after 3 years dealing with Dementia, I now only keep it to record my mum's behaviour especially her bad days, it helps me to see if there is a pattern and plan if I can do anything. It goes with us whenever we have a gp or memory clinic appointment. Don't have to rely on my own memory when they ask how things are going.

Hi Tin

It's quite new to me keeping this 'diary', but I can quite understand that after 3 years I probably wouldn't be recording every little thing. Even now when we have good days it is hard to think what to write, but I have been doing so, even if its just a few lines. I'm also keeping a list of dates when certain things occur just in case I ever need to refer to it quickly or if I ever get to see a GP with him. Keeping all that in your head is hard and things can so easily be forgotten. Take care. Elle3

 

[Elle3]

hello Elle3
I'm a bit surprised that the police haven't yet made a referral to SS themselves if they have been involved several times - that alone would make me want to contact SS to get him flagged up as a vulnerable adult at risk
it's good that your dad is happy in his world - he does, though, live in and interact with the world at large and it's a dangerous place at times - have you got him a tracker so you can tell where he is?
does the GP know about his travelling and getting lost? might you ask the GP to pay a home visit (about the flu jab?) or could you make an appointment for him, tell him it's for you and ask him to come with you or just be popping in on your way to having a coffee somewhere closeby

Hi Shedrech
Thanks for your reply. His local police have taken a note of his details, but that is all and over the space of a year they have only been involved twice, yesterday was the British Transport Police from Southport which is 30+ miles away from his home (he traveled there by train), it was logged as an incident but that is all they will be doing.

I've been out with my dad several times and to be honest he is actually quite aware of what he is doing and most of the time takes control especially as it is a routine he has done for many years so that helps, it's only when change happens or he gets confused with night and day that the problems occur. I suppose 3 instances of Police involvement in a period of 13 months is actually pretty good when you consider he travels about on the trains most days. Believe me when I say I have tried to dissuade him from his trips out, but how can you stop something he loves to do, especially when I can't watch over him 24/7.

No he doesn't have a tracker or mobile phone, he has never embraced technology and it is very hard to get him to accept anything new now. I tried putting a key on a lanyard to keep around his neck, that lasted all of 5 minutes and when I kept trying to re-introduce it, he threw it away. I also bought him a clock that told him if it was morning/afternoon/night but that went the same way (which I was not happy about as it was expensive).

GP is currently out of the question and I have tried everything, even getting the GP to visit but he refused to let him in. My dad is very very stubborn!

 

[Elle3]

Hi Elle3
I have actually been advised by the social worker to write a diary. I have bought a book and have been struggling to write in it. I guess I am torn between what to put down without sounding like I'm moaning. But now that I read your post about a blog...I am very interested. Where do you do it.

Hi Samantha1977
I thought I would struggle to write in a book and I like to edit and change things around as I think of them so I find typing much easier and quicker and I have kept blogs before so these seemed like a natural solution for me, but it isn't for everyone. I tend to write down facts and keep it light hearted and I make it all about my dad than how I feel so I don't get chance to moan in it.

My blog is with wordpress.com, but there are others, blogger.com for instance. They are actually very easy and free to set up, you just choose a name and a template and away you go. You can even keep it private if you don't want to share it with the world. If you need any help just let me know. Take care. Elle3x

 

[Elle3]

Having just had experiance of mum wandering looking for her lost (i.e dead) dog in the middle of the night & police being called .....

the next day we had an emergency meeting with the Mental Health Team - the CPN pointed out that mum still has capacity -you cannot stop a PWD going for a walk, the CPN said the more calls the police get, the better, as this builds a better case for them!

my mum, as i suspect Elles dad, is still living at home and getting by quite well day by day. I work FT and my mum has point blanked refused any type of care -again, this is her right.

I would add Elle - - this is something the police are very used to - in fact the lovely police lady said dealing with dementia pateients is the nice part of her job instead of dealing with thugs!

& Yes - i have kept a diary for about a year now -helps me so much.

Hi Saskia
Many thanks for your reply and support with crazyweathers post.

In reply to crazyweather. My dad most days is perfectly capable of doing what he does as it has been part of his routine for years and short of locking him away it would be near impossible to stop him and at this moment in time I don't want to, he seems to have better days when his routine is not disrupted or changed.

Even though he has memory problems and gets confused as far as awareness and his capability to walk across roads, travel on trains etc are concerned I am not concerned, I have been out with him many times and he is very capable. The only time he has issues are when things have changed (train cancellations, different platforms etc) or he mixes up his days/nights when he has fallen asleep late afternoon.

When I have sought advice about this they have said I shouldn't stop him from doing what he enjoys and it would be difficult to stop him as he does live alone and would not consider leaving his home.

"Maybe time for a review of his meds, charge the locks and more security, plus an assessment by SS for PWD and carers?"

My dad is not on any meds due to being fit and well physically and his refusal to go anywhere near a GP under any pretext stops us getting a diagnosis for dementia. He would also refuse to see SS and have carers and getting locks and more security in his own home would be pointless.