Hints and Tips
- Thread starter Pejic
- Start date
Don’t bother contradicting the ridiculous observations or distorted memories - just agree, disregard it and move on with the “conversation “. In the long run it’s much better for your sanity
1. Make lists, make them in advance of needing them, modify them as errors and omissions are detected.
2. Make a list of your lists (and how / where to find them)
3. Prepare in advance (as far as you can, while you can) for what is coming
4. Ask your housemates not to move anything from where you are used to seeing it / finding it.
Convince them it might vanish from your universe if you do not see it.
(this I find the most scary thing so far, the way sights, sounds, smells, words suddenly reveal memories)
5. Keep paper and pencil everywhere: outdoor pockets, dining table, TV seat, desk, bedside table etc
(Stick-it notes and bookie's pens are helpful here)
6. Everything you are not going to do straightaway should be written down, straightaway.
7. If something has to be moved somewhere else and you are not going to do it straightaway, at least move it part
way so that it will remind you next time you pas it.
8. (Credit to Dunroamin) have a ****it Bucket, for all those things which you are not going to pursue
9. Don't ever assume you will remember something (however important / significant it might be
10. Keep dental chewing gum on your bedside table in case you forget to brush your teeth before going to bed
11. (more complicated) If there is something that needs to be replaced regularly (mainly food items) keep the next one in sight where you are using the item, then when the current one is finished and you pick up the
replacement, put the item straight on your re-order list. When the purchase arrives put it in sight as before.
12. If possible (and for as long as possible) use a computer/smartphone/iPad to help with your lists, put keep your
paper and pencil records as well.
13. Establish as early as possible some method of monitoring, to your satisfaction, how your brain is doing
❤️ Found this really useful! Newish to this journey - would be grateful for advice on how to monitor how my brain is doing?
Sorry you've had to join us ;-)
Monitoring
Establish a short set of routine tasks which require some skill and can be repeated under the same conditions
e.g. Pulmanism (matching overturned pairs of cards), rubix cube, solitaire, etc; work out a scoring system for each one based on relative complexity and perform and record them daily
It s easier with a computer, I have used used MS Hearts, Solitaire, Spider Solitaire and Tetris for the last 12 years (the last 2 since receiving my bad news)
I have now developed / am developing others (partly for self monitoring, partly following the use it or lose it philosophy) in Excel: (1) adding two 2 random digit numbers in my head as fast as possible, (2) ditto three 2 or 3 digit numbers (3) the 'confusing colour' test you have probably experienced where a colour is named in the wrong colour ink (4) (in progress) remembering 5 random words after a short view [no automatic hiding or scoring (apart from simple count of number correct) available yet] (5) (just started) Links (guessing the word associated with 3 others)
All these are available for sharing (no warranties etc) for use, or individual or collaborative development, though not designed for 'hard use' if treated well, 1, 2 and 3 perform well and produce graphs of daily (in my case) scores and a graph of 10 day moving average.
I yesterday discovered the 'gold standard' test used in USA for Alzheimer's disease assessment battery and am working out if / how to get these into Excel ('If' because I have yet to ascertain if and how they are all used in the UK when it might be misleading to my doctors to become too familiar in their 'tricks').
Any requests, questions or suggestions gladly received.
Fight on!
Best wishes,
Peter
Hi everyone,
Just to confirm, this discussion has now been made into a sticky thread
The Dementia Support Forum Team
Just to confirm, this discussion has now been made into a sticky thread
The Dementia Support Forum Team
Last edited by a moderator:
When jotting down a note for later recording (a date, or an amount for instance) do not assume you will recall what it is about when it comes to entering it into your diary or accounts, write down venue and expense detail as well (guess who got caught out yesterday?). Also beware of abbreviations, I couldn't remember what S/W in a scribbled note referred to the other day and guessed (from my working life) that I meant software, but a couple of days alter in a clearer note I realised it stood for sandwich now!
Thank you very much Pejic for these helpful tips. The above made me laugh as I've done exactly the same thing! When you write the abbreviation it's so obvious what it stands for but when you come back to it, it's a different matter.
Reading this thread came at a good time for me as I've just spent a good half hour looking for the iron. Ironing isn't something I get round to very often and I was pleased with myself after setting up the ironing board, assembling hangers etc. Then I went to get the iron and realised I'd moved it when clearing out the cupboard where the boiler is, ready for the annual visit of the heating engineer. It's been in the same place since I moved here 9 months ago. Anyway, found it in the end after much annoyance and frustration and told myself from now on I must make a note whenever I put things in a new place. You have great ideas. Please keep it up!
I sympathise with you Tricot, trying to imagine what you are not going to be able to do in the future, so that you can do your best to mitigate consequent difficulties is surprisingly difficult (like trying to imagine a colour which doesn't exist). My life is getting so self-regimented these days that I feel as though I am actor playing the life I used to lead, everything is fine as long as everyone follows the script, but chaos ensues if anything unanticipated has to fitted in. Whereas I used to look forward to changes in routine and new difficulties to resolve, now I dread and avoid both.
This is very helpful to me in planning my future
www.alzinfo.org
Clinical Stages of Alzheimer’s
There are 7 clinical stages of Alzheimer's Disease. What to expect from the initial stages to the end stage of Alzheimer's.
Clinical Stages of Alzheimer’s
New York University’s Dr. Barry Reisberg outlines the seven major clinical stages of Alzheimer’s disease. Dr. Reisberg is the Clinical Director of New York University’s Aging and Dementia Research Center.
www.alzinfo.org
Although there is no overall benefit of this rotten disease I have noticed some things on the positive side, how about you?
(a) Loss of inhibition some physiological, but some psychological as well has allowed me to be more assertive about how I'm treated
(b) I have noticed that my sentimental attachment to acquired and gifted 'rubbish' is fading away, allowing me to declutter (and raise a few bob!)
(c) Motivation to face up to, and document future and end of life wishes.
(a) Loss of inhibition some physiological, but some psychological as well has allowed me to be more assertive about how I'm treated
(b) I have noticed that my sentimental attachment to acquired and gifted 'rubbish' is fading away, allowing me to declutter (and raise a few bob!)
(c) Motivation to face up to, and document future and end of life wishes.
My husband says that one of the good things is he can watch his favourite films over and over again and most of the time he can enjoy them as much as the first time because he remembers so little.
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