The importance of routine?

[Tender Face]

My Outreach worker told me months back of the importance of routine for mum and I have tried my best to stick to visiting at preset times during the week/weekend around work etc….. I kinda subscribed to the idea …. If it’s Wednesday, her buddy’s coming … if it’s Saturday she expects her newspaper (for the TV Guide to turn over each day thru’ the week to remind her what day it is) …. or is it because she’s got her newspaper that she is reminded it’s Saturday? Whichever, I could see some benefit as aide-memoire for her ……

With a change in work pattern I am now trying to establish new routines …. but have to question just how much benefit there is for mum in this now and whether I am actually tying myself in unnecessary knots trying to stick to a ‘timetable‘?

‘Routines’ are generally thrown out by mum’s various appointments (necessitating flexibility at work taking time off and then having to work extra to make up) - or indeed mum’s own ‘fluctuations’ both mentally and physically (Monday she presented as ‘at death’s door’ (her words) and even agreed to a wheelchair at hospital without the usual argument - Tuesday she was able to take herself off to the local hairdressers )

I wondered if anyone had been given similar advice - and followed it or not (!)…

(BTW this was advice was received at a point when mum was clearly suffering from ‘memory problems’ but had not had the subsequent diagnosis in which an element of LBD was mooted - months on with such changes in her presentation/mood/behaviour/abilities etc from day to day or even hour to hour …. I am wondering if trying to stick to routine is too rigid for both of us and I need to adopt a more ‘go with the flow’ approach (I think I’ve just answered my own question ……) …. but would be grateful for any thoughts ……

Many thanks,

Karen,

 

[jenniferpa]

Hey Karen

My own thoughts on this is that while a routine can be a good idea if soemone is suffering from somewhat nebulous "memory problems", there comes a point where no amount of routine will make up for the increasing deficits. If the individual can't even tell if it's night or day, or remember whether they've just woken up or if it's time to sleep, routines are just a rod for your back, rather than a support to the sufferer. I think the break point is when someone has lost all sense of time: without that sense, even an hourly routine becomes meaningless.

Jennifer

 

[Grannie G]

Dear Karen, I think you did answer your own question. It can only be `go with the flow`.

Whenever I tell my husband about any arrangement, be it routine or not, if it`s in the future, be it in one hour or one day, he questions and quetions, because he keeps forgetting my answers.

So now I say nothing until the time has come. We have no routine.

Because you`re working, you need a routine, but does your mother need to know what it is?

Love Sylvia x

 

[Tender Face]

D'oh....

Should've mentioned what prompted me to ask the question today ..... turned up at mum's lunchtime today (unexpectedly) to find she wasn't even dressed .....

...... also half a glass of whisky beside the sofa ....... there from last night? (And I certainly don't include whisky on her shopping (fortified wine at best) ..... so can only presume she stopped by the 'offy' on her way back from the hairdressers???)......

Now I think of it .... last time I turned up unexpectedly (outside the 'timetable') I removed a half empty bottle of something she had stashed behind a chair ... forgets I tidy up for her.......

I have no issue with her 'having a tipple' if it helps - as she has always done for many years in the evening - and checked with the CPN just recently that alcohol (in moderation) is fine with her taking Aricept ..... but .......

Perhaps my 'presenting concern' is masking some more important fears ......

Love, Karen, x

 

[jenniferpa]

Unfortunately, if you can't remember if you've had one drink, there's a good chance you'll have another (and another etc). Also, and this is speculation on my part, I do wonder whether if your memory is failing, if the feeling of being slightly sozzled is a welcome relief to the normal "confused" feeling you must have with dementia, although that might be assuming an ability to relate cause (I've had a drink) to effect (I can't think straight).

Jennifer

 

[Lucille]

Hi Karen

I know how you feel on this one! I think, as Grannie G says, sometimes the routine might be useful for you to fit around your commitments but not for your mum ... who if she's anything like mine, and they sound so very similar, won't remember arrangements anyway ... sometimes ... maybe ... never! Mum sometimes forgets I'm coming to see her even though I'm a regular visitor and I write it all over the place for her. Call her the day before, the night before, the morning I'm leaving and en-route!

Interestingly, I was told by mum's consultant to keep things as much within a routine as possible. However, I now find mum changes it. One minute she says she's staying in to do the cleaning and then when I ask her if she did it, there's this silence and she says, that she went out. In fact she goes out every day now, which I suppose in one way is a routine, but it's not the routine she's had since she retired. ... or indeed before she was diagnosed. A double worry!!

Mmm a conundrum indeed. Do what suits you, and where necessary go with the flow. Sometimes I find in trying to accommodate mine and her routines, my blood pressure and I suspect mum's, just can't be faffed with all the arsing around!!

BTW: Re the 'pop' - I too have found bouteilles de vin half empty (or half full!) but I've let it go. I feel at the moment with what she has on her plate if she fancies a drink then she can have it. As Brucie said on here in an unrelated post ... "if we're standing on the deck of the Titanic and our feet are getting wet, we don't worry about paying the milk man." When I read that I thought harumph! I do worry, but then I thought, he's bang on. And I don't want to keep tabs on mum 24 hours a day ... do you? (not with mine, obviously, but yours!!)

All the best.

 

[DickG]

Hi Karen

I believe that routine is very helpful for Mary although there is no way she can conciously understand the concept of routine. Having recognised the value of routine for Mary I also recognise the damage it can do to my own wellbeing; like all of us on TP I have given up much to careing and I refuse to give my sanity as well.

Ultimately I weigh up my sanity against Mary's need for routine and I am not ashamed to admit that sanity sometimes prevails. Carers have rights as well!

I would advise that you think carefully how far routine is allowed to dominate your life.

Love

Dick

 

[Amy]

Hiya Karen,
Surely we adopt routines to help us - if they are becoming destructive, then maybe it is time to review them. You have to consider your needs as well as your mum's.
Love Helen

 

[Áine]

I remember before dad was clearly not well, trying really quite hard to NOT establish a routine ............ so I wasn't always expected to go round on a Sunday, or Tuesday evening, or whatever. Perhaps it was selfish ..... but it allowed me to feel I was choosing to visit rather than tied to an obligation (at least some of the time). Perhaps there's a period during the progression of AD when a routine is helpful, but then, as the others have said, after a certain point it outlives it's usefulness. Selfish as it might sound, and much as I wasn't able to put it into practice, take care of yourself first. Without that it's hard to be able to offer much to others.

 

[Norman]

The only routine that we have is the washing and dressing .
I am aware that it is almost impossible to teach new things to AD sufferers.
With showering I am convinced that some where in there Peg knowa what is coming next and as a consquence we do not have a scene,with the fear of water.
One of the carers does not follow the same pattern and there is much upset mainly with the shower.
Dressing also we carry out the dressing in the same room,the same place, each time,I am convinced that Peg has a good idea what is the next move.
The rest of our lives is non routine,nothing planned,take life as it comes.
Only my humble theory but based on years of experience.
Norman

 

[Tender Face]

Brilliant, all of you, thank you! I don't think anyone sounds selfish - just adapted better than I am doing ..... wonder is it actually me being selfish and desperate for 'routine' in trying to cling to keeping life in some semblance of structured 'neat and tidy boxes' (aka denial)?

I clearly haven't changed my thinking with the way mum's need for 'structure' or otherwise obviously has - although (and thanks Lucille!) if her 'routine' is taking Aricept at breakfast I think I DO somehow need to keep tabs on whether said breakfast is the 40% proof liquid variety!!!! (Would explain a lot of the missing cash ) ....

Perhaps she's having a hot toddy for brekkie and porridge as a nightcap? ........ Jeepers! I'm absolutely not denying her what pleasure she can find when she is so alone for such long periods ......as long as she's not putting herself in danger .... does it harm? Time for little chats with the CPN etc, methinks .....

Thanks again, all of you, love, Karen, x

 

[mel]

Hi Karen
I had a fairly loose routine when mum was living with us but I had the luxury of being at home with her all day and after the initial washing/feeding in the morning the routine was pretty much adaptable depending on mums moods.
You don't have that luxury being a carer and working too.
I do think you have to put yourself first in this otherwise you'll be run ragged.....I think its you that needs a fairly structured routine in this to keep yourself going!
as far as the drink goes....well I think you just need to keep an eye on it .....but if mum is having a nightcap at breakfast and porridge at bed time then think of all the shift workers who probably do this too!!!
Love Wendy xx

 

[jenniferpa]

There is one other minor virtue to a routine for a carer that I don't think anyone has mentioned. It makes it much easier to respond to those "what's happening now" questions. No thought required, no dithering, no "well what would you like to do" (a fatal flaw on my part which I do not seem to be able to break myself of). My mother doesn't do too well with open-ended situations, so having a plan makes it easier to keep myself on track, otherwise I can just fritter the time I have with her away. Of course best laid plans etc..

Jennifer

 

[Margarita]

if it’s Saturday she expects her newspaper (for the TV Guide to turn over each day thru’ the week to remind her what day it is) …. or is it because she’s got her newspaper that she is reminded it’s Saturday? Whichever, I could see some benefit as aide-memoire for her ……

[/QUOTE

I would say or is it because she’s got her newspaper that she is reminded it’s Saturday .

As my mother new that in the days of the week we would get the paper not on Saturday and the she new when it was Sunday because carer would not come in and I would get the Sunday paper

My mother knows when its night time and day time, so as soon as its light she up knows carer come in to wash her. So now I have got dark curtains for her bedroom , so hopefully she won’t be up as soon as its light , because then the day can became very long for me and mum thinks the carer late as it take a long time for her to get from 6 :30 am to 8am

Now I have moved she getting very confused in the days of the week , because as we have moved are routine has gone pear shape and I am not getting paper every day , so even thought my mother score is 10 on the memory test , getting paper it seem to prompt her memory .

I don’t also like to get in a routine also, but sometime you just can’t help it, as it does help me to organise myself.


Mum days at day centre is changing , which I find is good because it seem to motivate her memory

 

[Lila13]

Our routine was based on carers 3 times a day (though they didn't always turn up), meals on wheels 5 times a week, nurses twice a week, frozen meal deliveries once a fortnight. I think my mother was happiest and most manageable during the short time when we could take that life support structure for granted.

I wanted others (her friends and relations) to be more predictable, but of course there was nothing we could do about that.