Daily checklist for someone with Dementia, helpful?
Discussion
Hi,
The short version is per the title.
Long version: My Grandfather suffers from dementia which varies a bit in terms of severity. At its peaks he gets anxious because he feels he's like hes got lots to do but can't remember what. I think this is because throughout his whole life he has had a busy schedule and has always been the one in control. Now in reality he has relatively little to remember as between carers, family etc he has visits 2 or 3 times a day during which most routine stuff is taken care of.
I was wondering if a daily task list/weekly planner would be useful. The idea being that a new one can be given to him at the start of each week so he has a single point of reference if he can't remember what he has/hasn't done or still has to do.
He was an accountant & company secretary so a methodical approach is second nature to him. He's started writing lists and keeping a journal (as his short term memory) but keeps losing the lists or forgetting what should be on them.
My reservation is along the lines of does stuff like this make dementia better or worse. Better because it removes the stress and anxiety, or worse because it stops exercising the grey matter IYSWIM?
The short version is per the title.
Long version: My Grandfather suffers from dementia which varies a bit in terms of severity. At its peaks he gets anxious because he feels he's like hes got lots to do but can't remember what. I think this is because throughout his whole life he has had a busy schedule and has always been the one in control. Now in reality he has relatively little to remember as between carers, family etc he has visits 2 or 3 times a day during which most routine stuff is taken care of.
I was wondering if a daily task list/weekly planner would be useful. The idea being that a new one can be given to him at the start of each week so he has a single point of reference if he can't remember what he has/hasn't done or still has to do.
He was an accountant & company secretary so a methodical approach is second nature to him. He's started writing lists and keeping a journal (as his short term memory) but keeps losing the lists or forgetting what should be on them.
My reservation is along the lines of does stuff like this make dementia better or worse. Better because it removes the stress and anxiety, or worse because it stops exercising the grey matter IYSWIM?
As with all things (and especially with dementia) it depends. Does he actually do things still? the kind of things that you'd put on the checklist? My father (who has just gone into the care of the Royal British Legion) would get agitated and wander round saying he didn't know what he should be doing. But he couldn't read anymore (even if his eyesight was up to it), couldn't follow a film or TV plot, he didn't understand shopping and walking any distance was becoming a problem.
The truth was that there wasn't anything to do in the house (because I was doing it all and anything he tried to do I'd have to watch him doing or do it again afterwards) and I felt guilty about that. I did use shaving as a standby as he never remembered and would sit with his electric razor and give it a go, but in the end he'd say he didn't need to, or it was okay and still be looking for 'something he should be doing'. I realised eventually that the agitation was really more about the fact that he knew something was wrong. In his mind this translated to 'there must be something I need to do' because he basically never stopped doing things, even when he retired. He did a few things for pleasure but for most of my parents' married life he did the shopping, the cooking, the gardening, the driving, maintained cars and caravan and even the hoovering.
If he was too agitated to sit and watch TV (air show dvds) I'd take him out in the car for a drive, even if we just did a round trip without going anywhere and when we got back I'd tell him - that was a good job. He hadn't a clue what we'd done, but he'd be happy that we'd gone out and for a while he'd feel something had been achieved.
So, it depends if your grandfather has much to do and if he can use a list still. If he can and there are things he could do then a checklist might work to give him some tasks to do and to show he's done something in the day. If he has carers visiting daily then they can ensure the list shows the correct day or cross off/turn over the previous day so he's only seeing the correct day/list.
As with all things, if it works, there will come a time when it doesn't help anymore, but it's worth a go if it might help to ease his anxiety. Your problem may be that he doesn't remember to use it or doesn't understand what it's for. And also that the anxiety may be a more general symptom and the 'not knowing what to do the explanation for anxiety that immediate springs to mind, rather than the primary cause.
You have my sympathies, OP, it's not an easy thing to deal with. I looked after my father for 2 and a half years until he had no clue where he was or who I was. 3 weeks in the dementia home and he's not asked about me once and doesn't recognise me as familiar when I've visited, even as a familiar face. They tell me he seems happy in his own 'little bubble' and I'm grateful that he never really understood what was happening to him.
The truth was that there wasn't anything to do in the house (because I was doing it all and anything he tried to do I'd have to watch him doing or do it again afterwards) and I felt guilty about that. I did use shaving as a standby as he never remembered and would sit with his electric razor and give it a go, but in the end he'd say he didn't need to, or it was okay and still be looking for 'something he should be doing'. I realised eventually that the agitation was really more about the fact that he knew something was wrong. In his mind this translated to 'there must be something I need to do' because he basically never stopped doing things, even when he retired. He did a few things for pleasure but for most of my parents' married life he did the shopping, the cooking, the gardening, the driving, maintained cars and caravan and even the hoovering.
If he was too agitated to sit and watch TV (air show dvds) I'd take him out in the car for a drive, even if we just did a round trip without going anywhere and when we got back I'd tell him - that was a good job. He hadn't a clue what we'd done, but he'd be happy that we'd gone out and for a while he'd feel something had been achieved.
So, it depends if your grandfather has much to do and if he can use a list still. If he can and there are things he could do then a checklist might work to give him some tasks to do and to show he's done something in the day. If he has carers visiting daily then they can ensure the list shows the correct day or cross off/turn over the previous day so he's only seeing the correct day/list.
As with all things, if it works, there will come a time when it doesn't help anymore, but it's worth a go if it might help to ease his anxiety. Your problem may be that he doesn't remember to use it or doesn't understand what it's for. And also that the anxiety may be a more general symptom and the 'not knowing what to do the explanation for anxiety that immediate springs to mind, rather than the primary cause.
You have my sympathies, OP, it's not an easy thing to deal with. I looked after my father for 2 and a half years until he had no clue where he was or who I was. 3 weeks in the dementia home and he's not asked about me once and doesn't recognise me as familiar when I've visited, even as a familiar face. They tell me he seems happy in his own 'little bubble' and I'm grateful that he never really understood what was happening to him.
Thanks for the responses.
Munter & Charlie that is a valid point, groundhog day wouldn't be an improvement. Charlie thanks for sharing your experience. He likes to get out for a drive and see some of his favorite bits of the local area.
He is still at home and can still be quite lucid, short term memory is the struggle. There is nothing critical for him to remember. E.g. Even if he forgets his medicine or dinner it will be a maximum of a few hours before someone else is there with him, obviously at that point these things are checked. Fortunately he can still read and write so things like this are still physically possible, for the time being anyway.
My thinking was that it would help him feel like he's still in control and give him something to check if he feels like he's forgotten something. I think sometimes he's in a different world but often he knows he's forgotten something simple and then gets annoyed with himself. Probably not true in all circumstances but apparent in some because he will say as much.
I'm a little bit removed from the situation (distance) but trying to help my mum and aunt think of how to make life as good as possible. They've spoken to specialists who seem to be able offer little apart from telling them that it will get worse.
Munter & Charlie that is a valid point, groundhog day wouldn't be an improvement. Charlie thanks for sharing your experience. He likes to get out for a drive and see some of his favorite bits of the local area.
He is still at home and can still be quite lucid, short term memory is the struggle. There is nothing critical for him to remember. E.g. Even if he forgets his medicine or dinner it will be a maximum of a few hours before someone else is there with him, obviously at that point these things are checked. Fortunately he can still read and write so things like this are still physically possible, for the time being anyway.
My thinking was that it would help him feel like he's still in control and give him something to check if he feels like he's forgotten something. I think sometimes he's in a different world but often he knows he's forgotten something simple and then gets annoyed with himself. Probably not true in all circumstances but apparent in some because he will say as much.
I'm a little bit removed from the situation (distance) but trying to help my mum and aunt think of how to make life as good as possible. They've spoken to specialists who seem to be able offer little apart from telling them that it will get worse.
charlie926J said:
If he can and there are things he could do then a checklist might work to give him some tasks to do and to show he's done something in the day. If he has carers visiting daily then they can ensure the list shows the correct day or cross off/turn over the previous day so he's only seeing the correct day/list.
As with all things, if it works, there will come a time when it doesn't help anymore, but it's worth a go if it might help to ease his anxiety. Your problem may be that he doesn't remember to use it or doesn't understand what it's for. And also that the anxiety may be a more general symptom and the 'not knowing what to do the explanation for anxiety that immediate springs to mind, rather than the primary cause.
Good points, thanks. As with all things, if it works, there will come a time when it doesn't help anymore, but it's worth a go if it might help to ease his anxiety. Your problem may be that he doesn't remember to use it or doesn't understand what it's for. And also that the anxiety may be a more general symptom and the 'not knowing what to do the explanation for anxiety that immediate springs to mind, rather than the primary cause.
Edited by waterwonder on Saturday 28th June 23:48
waterwonder said:
He is still at home and can still be quite lucid, short term memory is the struggle. There is nothing critical for him to remember. E.g. Even if he forgets his medicine or dinner it will be a maximum of a few hours before someone else is there with him, obviously at that point these things are checked. Fortunately he can still read and write so things like this are still physically possible, for the time being anyway.
My thinking was that it would help him feel like he's still in control and give him something to check if he feels like he's forgotten something. I think sometimes he's in a different world but often he knows he's forgotten something simple and then gets annoyed with himself. Probably not true in all circumstances but apparent in some because he will say as much.
Sounds like it might be possible for someone to sit down with him in a more lucid moment and go through a list of the things he feels are important or useful for him to do in a day, or that he would get satisfaction from seeing achieved. Especially if it's titled in big letters 'Things to Do Today' or similar and hung/placed somewhere prominent. It may take a little repetition of - have you checked your list - to get him used to using it, but worth a try. My thinking was that it would help him feel like he's still in control and give him something to check if he feels like he's forgotten something. I think sometimes he's in a different world but often he knows he's forgotten something simple and then gets annoyed with himself. Probably not true in all circumstances but apparent in some because he will say as much.
waterwonder said:
I'm a little bit removed from the situation (distance) but trying to help my mum and aunt think of how to make life as good as possible. They've spoken to specialists who seem to be able offer little apart from telling them that it will get worse.
Firstly, well done, for trying to help. I found that having someone (my brother, who lives a couple of hours away) listening to me was a huge support. If your mum and her sister have taken on the task of supervising/monitoring his care, I suspect their partners will quickly become tired of hearing about it, so being involved, even remotely, can be very supportive. I e-mailed my brother constantly, partly to keep him in the loop, but it helped to be telling someone else what was going on.My father was started on rivastigmine (Exelon) when he was 90 and had already forgotten who my brother was - which was how we got him diagnosed with Alzheimer's. It slows the brain's breaking down of acetylcholine, which is the chemical used in signalling between nerve cells and is one of the standard prescried drugs. He went (over the course of 4 weeks and increasing dosage) from not knowing what a signature was to signing his usual signature. So, in his case, that medication really helped.
2 years later, after a lot of reading on diet (not specifically regarding dementia) I removed wheat from his diet (he had done similar himself many years ago to combat arthritis before hip replacement) and noticed significant improvement. He went from looking at my hand when I tried to point things out to him, to taking a verbal 'look at X' and reacting to and commenting on what was pointed out. I think he regained about a year of cognitive ability with that change. Of course he continued to decline, but it was a major improvement in the course of a few days and a very slow continued decline. After the initial improvement he also asked me what was wrong with him and what was being done about it, where previously he'd been pretty much unaware that anything specific was wrong at all.
I wish I'd been aware earlier when I could have discussed it with him and given him the option to try a more aggressive (low carb) approach when he still had enough teeth to manage decent cuts of meat. But the fact that he was so far advanced meant he didn't miss what I didn't put in front of him, so didn't ask why he wasn't getting toast/rolls/hot cross buns/battered fish any more. The book that triggered the attempt was Wheat Belly by Dr William Davis, (which is really about losing weight, which he didn't need, but co-incidentally mentions mental improvements in his patients who went wheat-free) but other low carb-leaning books reinforced the thought.
However, it's pretty much impossible to influence diet from a distance and especially when multiple carers are involved. Once my father had deteriorated to the point where residential care made sense (he had no idea he was in his own home or that I was family, and was losing interest in food) I accepted that he would return to a mostly wheat-based diet. If it speeds his decline now that he no longer has his independence or much awareness of his family/life/history then so be it.
Of course there are different causes and diagnoses of dementia and everyone is different. I already knew my father reacted favourably to a reduced-wheat diet from his experiences 20 years before. Not everyone might have the same sensitivities. Mainstream medicine is focused on drugs to slow the decline by shoring up the normal functioning and not concerned with alternative approaches of a more co-incidental nature.
I'm sorry, that doesn't help you much unless you feel your grandfather/mother/aunt might be open to some radical experimentation with diet as it's a fairly extreme/difficult change to implement and police and probably unlikely to affect e.g. vascular dementia rather than alzheimer's. But it's worth reading around what's being talked about on-line as the mainstream approach is, yes, nothing we can do except attempt to slow the decline.
Thanks for sharing. I will explore some of those things further. It sounds like you did a great job.
I should've been more specific it is Alzheimer's that he's suffering from.
It's a difficult thing to deal with and I think the toughest aspect is how 'out of character' it makes him.
I'm dreading my parents going the same way further down the line. However obviously these things are far worse for the patient and fortunately for carers (family) its a small price to pay relative to the 'good' years.
I should've been more specific it is Alzheimer's that he's suffering from.
It's a difficult thing to deal with and I think the toughest aspect is how 'out of character' it makes him.
I'm dreading my parents going the same way further down the line. However obviously these things are far worse for the patient and fortunately for carers (family) its a small price to pay relative to the 'good' years.
Edited by waterwonder on Sunday 29th June 10:04
My wife's aunt has dementia & her life now revolves around her diary.
Apart from family popping in, everything scheduled for the week goes in there & if there are changes we will go over & update the diary. This way she knows exactly what is going on. A few of us are local which helps. Something that she has found very helpful is for her to write notes in the diary against the events. As an example she often forgets that we have relatively young twins but doesn't forget our 5 year old. She'll look in her diary & see that the boys visited too & that helps her feel more prepared & connected with what's going on.
I wish we could have tried this for my Nanny but she was much more advanced in her dementia when she was diagnosed. It's a travesty to classify it as a social illness when many sufferers are as just as in need of care as others with illnesses that qualify for support.
Apart from family popping in, everything scheduled for the week goes in there & if there are changes we will go over & update the diary. This way she knows exactly what is going on. A few of us are local which helps. Something that she has found very helpful is for her to write notes in the diary against the events. As an example she often forgets that we have relatively young twins but doesn't forget our 5 year old. She'll look in her diary & see that the boys visited too & that helps her feel more prepared & connected with what's going on.
I wish we could have tried this for my Nanny but she was much more advanced in her dementia when she was diagnosed. It's a travesty to classify it as a social illness when many sufferers are as just as in need of care as others with illnesses that qualify for support.
Kiltie said:
OP, I know it's not exactly what you're thinking about but I wondered if you might be interested in this (original question here).
In the context of keeping things updated, I wondered if the concept could be developed such that you could pre-load a week's worth of stuff? Just a though.
Best of luck.
Damn, that's clever. (I followed the links to the original concept page.) My father has eyesight problems as well, so I'm not sure it would have worked for him, but he would wander round in the middle of the night assuming that because he was awake, it must be daytime, even if it was pitch black outside. I tried a digital clock with big blue numbers but it put out too much light and he switched it off. In the end I had to point out each and every time that it was dark outside and it wouldn't be morning until the sun came up - which was fine in the winter ... In the context of keeping things updated, I wondered if the concept could be developed such that you could pre-load a week's worth of stuff? Just a though.
Best of luck.
Kiltie said:
OP, I know it's not exactly what you're thinking about but I wondered if you might be interested in this (original question here).
In the context of keeping things updated, I wondered if the concept could be developed such that you could pre-load a week's worth of stuff? Just a though.
Best of luck.
Thanks, idea banked for if/when he gets a bit worse. I think you're right and its probably not too difficult to develop it to include the days tasks. Unfortunately in this case he's not really great with tech, so I think a pencil and paper would work better. In hindsight we should've got him into computers etc about 10 years ago. In the context of keeping things updated, I wondered if the concept could be developed such that you could pre-load a week's worth of stuff? Just a though.
Best of luck.
The problems with lists/notes is they tidy the buggers away 
I'm currently looking after my dad while living in his house, to say it's a challenge is an understatement.
He got up at 03:00 this morning and started banging about, then he went out at 06:30
and bought ten cigars which he's now lost. He had also managed to snap his glasses in half by the time I woke up. We've been up town this morning and got them repaired which means I might be able to plonk him in front of the TV for some peace. He's now asleep on the sofa which means he'll be b
d well awake again at 03:00 
He had a note telling him my mum was away for a week, every time he looked at it (at roughly two minute intervals) he asks me where she's gone, who with and when will she be back. Thinking the note was confusing him I took it away
"where's she gone, there'll be trouble when she gets back" 
so the note has been reinstated. He is now back to reading it at two minute intervals and asking the self same question.
I have to make about four or five journeys across town and back every day as I'm also looking after my daughters and they need lifts as their life is back there, not here. I take him out for a ride each time and we have the same conversation four or five times as we drive the same bloody route we drove earlier. Yes, I know they park too many cars on the side roads, I know that's the doctors surgery, I also know the name of this road and yes, you went to school over there and your headmaster was Mr Talbot. Apparently he was a good head and my dad was head boy.
Yesterday I had a bath, I got out to find him dressed in my clothes (but thankfully not my SuperDry pants
) He'd been through my rucksack and got everything out as he was in the wrong bedroom... My daughter heard me say "Dad, they're my clothes" and went back to sleep for the rest of the morning.
On Saturday he lost his keys. I spent half an hour looking for them and eventually discovered another hiding place he has. I told him to put them in his pocket. I popped downstairs and within thirty seconds he'd lost the buggers again (sic)
One thing I've learned while I'm here is to never ever use anything on the draining board as he has one handkerchief which he uses for everything. Wiping the bench where he has his cigar, blowing his nose, cleaning his glasses it really is a multi-purpose device. The other day I caught him cleaning a cup with it
Groundhog Day? It's not Groundhog Day round here it's groundhog five minutes...
An utterly appalling illness, someone please shoot me before my marbles go...
I'm currently looking after my dad while living in his house, to say it's a challenge is an understatement.
He got up at 03:00 this morning and started banging about, then he went out at 06:30
and bought ten cigars which he's now lost. He had also managed to snap his glasses in half by the time I woke up. We've been up town this morning and got them repaired which means I might be able to plonk him in front of the TV for some peace. He's now asleep on the sofa which means he'll be bd well awake again at 03:00 He had a note telling him my mum was away for a week, every time he looked at it (at roughly two minute intervals) he asks me where she's gone, who with and when will she be back. Thinking the note was confusing him I took it away
"where's she gone, there'll be trouble when she gets back" so the note has been reinstated. He is now back to reading it at two minute intervals and asking the self same question.I have to make about four or five journeys across town and back every day as I'm also looking after my daughters and they need lifts as their life is back there, not here. I take him out for a ride each time and we have the same conversation four or five times as we drive the same bloody route we drove earlier. Yes, I know they park too many cars on the side roads, I know that's the doctors surgery, I also know the name of this road and yes, you went to school over there and your headmaster was Mr Talbot. Apparently he was a good head and my dad was head boy.
Yesterday I had a bath, I got out to find him dressed in my clothes (but thankfully not my SuperDry pants
) He'd been through my rucksack and got everything out as he was in the wrong bedroom... My daughter heard me say "Dad, they're my clothes" and went back to sleep for the rest of the morning.On Saturday he lost his keys. I spent half an hour looking for them and eventually discovered another hiding place he has. I told him to put them in his pocket. I popped downstairs and within thirty seconds he'd lost the buggers again (sic)
One thing I've learned while I'm here is to never ever use anything on the draining board as he has one handkerchief which he uses for everything. Wiping the bench where he has his cigar, blowing his nose, cleaning his glasses it really is a multi-purpose device. The other day I caught him cleaning a cup with it
Groundhog Day? It's not Groundhog Day round here it's groundhog five minutes...
An utterly appalling illness, someone please shoot me before my marbles go...
Fortunately my father was converted to tissues by my mother several years ago. He was using kitchen towels. Only, as you say, he'd wipe his fingers on one after getting eg ketchup on them and then decide to blow his nose on the same tissue. 
He also took to inserting folded tissues neatly between the pages of his books.
The advantage of the short memory span is that if you can find something he likes to watch, you can play the same dvd over and over. My father is into aircraft so we had several Farnborough/Duxford/Waddington Air Show DVDs. He'd usually fall asleep half way through and if he was still asleep at the end, I'd just restart it. He'd quite happily sleep to the sound of merlin engines. 
He also took to inserting folded tissues neatly between the pages of his books.The advantage of the short memory span is that if you can find something he likes to watch, you can play the same dvd over and over.
My father is into aircraft so we had several Farnborough/Duxford/Waddington Air Show DVDs. He'd usually fall asleep half way through and if he was still asleep at the end, I'd just restart it. He'd quite happily sleep to the sound of merlin engines. Gassing Station | Health Matters | Top of Page | What's New | My Stuff