Hi Mr Rusty, really can empathise with you -it is difficult being an only child and living a great distance from your elderly parent. Do get LPA and even though your mum may not be ready for them from my experience do some research into what is on offer regarding carers/ care homes in your mum's vicinity-The reason I say this is that if a crisis occurs with your mum you have knowledge of what is available - I had to get in carers in a hurry as my mum had gone several days without any of her heart medication/ was forgetting to eat had developed infected leg ulcers yet said everything was fine and luckily I got her into a good care home where she thrived physically. Regarding the driving can you say The doctor says you should not drive any more -Mum's generation had great respect for what her doctor said - this was very useful for telling Mum she would have to stay in her care home as the doctor wanted her there. Hope this is of some help.
How to help my mum who doesn't accept/remember that she can't remember...
- Thread starter Mr Rusty
- Start date
I've read Contented Dementia but not sure the approach is right for mum and me. She doesn't remember anything new or how to do things but she has not so far shown any signs of not knowing where she is or thinking she is living in a different time or place.
There's a new thread about this book started yesterday. Not clever enough to post link but the name is in the title of the thread.
There's a new thread about this book started yesterday. Not clever enough to post link but the name is in the title of the thread.
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Hi Mr Rusty
Not sure I have anything extra to add to the other replies but am in a similar situation and wanted to say I'm sorry to hear about your situation. Hope you can stay strong. I like the idea of "companion visits" as a way of selling some care. Note even sure what care might be helpful in some situations but just a way of keeping an eye on someone might be helpful.
Not sure I have anything extra to add to the other replies but am in a similar situation and wanted to say I'm sorry to hear about your situation. Hope you can stay strong. I like the idea of "companion visits" as a way of selling some care. Note even sure what care might be helpful in some situations but just a way of keeping an eye on someone might be helpful.
Hi
My mum was very similar when first diagnosed (I don't need anyone coming in here and telling me what to do etc etc) but we were having problems with her not eating plus also forgetting/double taking her heart medications because although they were in dated blister packs she couldn't remember what day it was.
We did use a befriending care service which was recommended by the social worker (we had one allocated) and it really helped. They had a couple of visits a week from the same lady every time and they'd go shopping for food or to the garden centre or just have tea etc. We also had a gardener from the service who Mum accepted as 'someone to do the heavy lifting' but was also there to chat to her so he did about 1/10th of the gardening you'd expect from a regular gardener (as it was her favourite pastime so we didn't want him doing things that she'd do) and she did say how great it was to talk to someone who really understood the plants etc. The befrienders always ensured that she had something to eat with them (sandwich normally) and they'd check up on whether food had been eaten.
This all worked really well for the first 6 months or so but we did then get carers in properly as Mum deteriorated.
Just an idea on the taxi front: can you get an account with a company so your mum doesn't actually have to pay them money? They can normally provide the same person if it's a regular gig (eg a 1000 every Monday to go shopping) and we noticed that as mum got used to seeing someone she forgot to remember that they were carers/being paid etc and thought of them as friends
My mum was very similar when first diagnosed (I don't need anyone coming in here and telling me what to do etc etc) but we were having problems with her not eating plus also forgetting/double taking her heart medications because although they were in dated blister packs she couldn't remember what day it was.
We did use a befriending care service which was recommended by the social worker (we had one allocated) and it really helped. They had a couple of visits a week from the same lady every time and they'd go shopping for food or to the garden centre or just have tea etc. We also had a gardener from the service who Mum accepted as 'someone to do the heavy lifting' but was also there to chat to her so he did about 1/10th of the gardening you'd expect from a regular gardener (as it was her favourite pastime so we didn't want him doing things that she'd do) and she did say how great it was to talk to someone who really understood the plants etc. The befrienders always ensured that she had something to eat with them (sandwich normally) and they'd check up on whether food had been eaten.
This all worked really well for the first 6 months or so but we did then get carers in properly as Mum deteriorated.
Just an idea on the taxi front: can you get an account with a company so your mum doesn't actually have to pay them money? They can normally provide the same person if it's a regular gig (eg a 1000 every Monday to go shopping) and we noticed that as mum got used to seeing someone she forgot to remember that they were carers/being paid etc and thought of them as friends
It might not have made any difference. Even in the earlier stages my mother seemed unaware of any problem - she could not remember that she could not remember - and although she was told by the GP that she had AD she had forgotten by the time she got home maybe 15 minutes later. We saw no point in reminding her when she could not retain any information for more than a few seconds. And TBH who on earth wants to be repeatedly reminded that they have a horrible disease that has no cure?
So please don't kick yourself black and blue about it!
How on earth have I managed to miss this thread? 
Hello MrRusty and hi to everyone else too
I have just tried to start a thread on this very topic, but was too exhausted and discouraged to explain the situation And now I find that you have all done it for me....
My mum lives alone in what I can only call 'slightly sheltered' accommodation, eg the garden is done and someone pops in a few days a week, but that's it. She is really neglecting herself, not taking (or over-taking) her meds, not eating much, has been wearing exactly the same clothes for, oh, maybe eight weeks now....She sits in her riser recliner chair with her stockings laddered and her hair flat and greasy (sorry, mum, but it's true). Allegedly she is watching TV but her ability to use the remote is random to say the least. She is unable to get into the bath or shower so has a strip wash, which worries me as she has fallen and is unsteady on her feet....She won't use a wheelchair, which means I can hardly take her out, apart from in the car.....I could go on.....you know where I'm coming from
Anyway I have taken the bull by the horns and insisted that she has a daily care visit of 15 mins, if only to check her meds and that she hasn't fallen. I would love her to have lunch visits, and even personal care (though I haven't broached the latter yet). The upshot is that she lets the 'girls' in, but won't let them do anything whatsoever for her. She is furious with me for implying that she can't manage, and our formerly pleasant and companionable times together have become like battlegrounds. I try to agree with her (as per compassionate communication!!!) but you could cut the atmosphere with a knife. It never used to be like this
I don't feel I can physically neglect mum. I see her 6 days a week at least and either have lunch or tea with her. When I arrive at her flat she is sometimes evidently dehydrated, says she doesn't want a drink, but when I make one she gulps it down. She won't let me cook for her so I have to take her out to a tearoom or pub to get a meal into her (you could say she's not daft!!!)
I have arranged for a hairdresser to come in and wash her hair (but she can only come fortnightly), a home visiting podiatrist (six weekly), and a cleaner (weekly). She has a day /date clock (but still doesn't know what day it is) and every gadget I can think of.
Not sure where I'm going with this really, it's just that I worry about mum constantly. Having the carers in almost seems to have made things worse, as she's angry and frightened and needs ever more reassurance, whilst at the same time 'having a right good go' at me
I tried contacting social services but they are not interested until she has less than £23,000.
Sorry to have gone on and on but I needed to say all this. Not sure what anyone can do until she either accepts more help, gets worse, or both...
Thanks for reading
Lindy xx
Hello MrRusty and hi to everyone else too I have just tried to start a thread on this very topic, but was too exhausted and discouraged to explain the situation
And now I find that you have all done it for me....My mum lives alone in what I can only call 'slightly sheltered' accommodation, eg the garden is done and someone pops in a few days a week, but that's it. She is really neglecting herself, not taking (or over-taking) her meds, not eating much, has been wearing exactly the same clothes for, oh, maybe eight weeks now....She sits in her riser recliner chair with her stockings laddered and her hair flat and greasy (sorry, mum, but it's true). Allegedly she is watching TV but her ability to use the remote is random to say the least. She is unable to get into the bath or shower so has a strip wash, which worries me as she has fallen and is unsteady on her feet....She won't use a wheelchair, which means I can hardly take her out, apart from in the car.....I could go on.....you know where I'm coming from
Anyway I have taken the bull by the horns and insisted that she has a daily care visit of 15 mins, if only to check her meds and that she hasn't fallen. I would love her to have lunch visits, and even personal care (though I haven't broached the latter yet). The upshot is that she lets the 'girls' in, but won't let them do anything whatsoever for her. She is furious with me for implying that she can't manage, and our formerly pleasant and companionable times together have become like battlegrounds. I try to agree with her (as per compassionate communication!!!) but you could cut the atmosphere with a knife. It never used to be like this
I don't feel I can physically neglect mum. I see her 6 days a week at least and either have lunch or tea with her. When I arrive at her flat she is sometimes evidently dehydrated, says she doesn't want a drink, but when I make one she gulps it down. She won't let me cook for her so I have to take her out to a tearoom or pub to get a meal into her (you could say she's not daft!!!
)I have arranged for a hairdresser to come in and wash her hair (but she can only come fortnightly), a home visiting podiatrist (six weekly), and a cleaner (weekly). She has a day /date clock (but still doesn't know what day it is) and every gadget I can think of.
Not sure where I'm going with this really, it's just that I worry about mum constantly. Having the carers in almost seems to have made things worse, as she's angry and frightened and needs ever more reassurance, whilst at the same time 'having a right good go' at me
I tried contacting social services but they are not interested until she has less than £23,000.
Sorry to have gone on and on but I needed to say all this. Not sure what anyone can do until she either accepts more help, gets worse, or both...
Thanks for reading
Lindy xx
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Sorry , I realise I posted the above in perhaps not the best place....but Mr Rusty's thread somehow enabled me to talk.....thanks Mr Rusty
Also I know there are no real answers, but I would love to hear any ideas if anyone has them
Meanwhile I am off to mum's now, literally with a lump in my throat before I even get there. Something has to give.....
Thanks
Lindy xx
, I realise I posted the above in perhaps not the best place....but Mr Rusty's thread somehow enabled me to talk.....thanks Mr Rusty Also I know there are no real answers, but I would love to hear any ideas if anyone has them
Meanwhile I am off to mum's now, literally with a lump in my throat before I even get there. Something has to give.....
Thanks
Lindy xx
Sorry
Also I know there are no real answers, but I would love to hear any ideas if anyone has them
Meanwhile I am off to mum's now, literally with a lump in my throat before I even get there. Something has to give.....
Thanks
Lindy xx
Oh Lindy.....just to say hugs.....and I haven't found the answers either!! Sorry!
Sent from my iPad using Talking Point
Hi Lindy
Could you try taking a ready made meal when you go and say you don't feel like going to the pub or tearoom and a bit like the drink I bet she'll wolf it down. I know how exhausting it is visiting so frequently without constantly then having to do what your caree wants against what you would like. Of course the caree isn't making reasoned decisions but instantaneous desires and is unable to consider your wishes or needs.
I have learnt with my friend to take things I know she will eat, she has a terrible diet, but eats healthily
and they often get wolfed before I've left.You may at some point be able to introduce meals on wheels if you start saying no Mum, I can't do it every day, of course you're likely to get a mouthful as well but if you can prepare for that mentally and let it go in one ear and out the other (I do understand it's not as simple as that though) she may have a think. My friend has been forced to because my limitations have become greater.
Hope something eases for you
love
Sue
Lindy your post reminded me of all the things I was worried about when mum was at home alone...and that's before her condition deteriorated. She would be literally helpless at home now as she can't stand alone let alone move about the house; the carers in her care home are even repositioning her in bed every 3 hours during the night to avoid pressure sores.
I need to remember all this because when I visit mum does nothing but complain about the home and everyone in it (then again when she was at home she told me constantly that she was fed-up and didn't want to stay there).
I don't feel I've helped you much here, except to say that it may not be possible to make mum happy. My mum would I think only be happy if she got well again...and sadly that will not happen. So keeping her safe is the best I can do right now.
I need to remember all this because when I visit mum does nothing but complain about the home and everyone in it (then again when she was at home she told me constantly that she was fed-up and didn't want to stay there).
I don't feel I've helped you much here, except to say that it may not be possible to make mum happy. My mum would I think only be happy if she got well again...and sadly that will not happen. So keeping her safe is the best I can do right now.
Many thanks Ash, Sue and Pickles
I was absolutely determined that today's visit to mum would be more positive. I avoided any conversation to do with needs or help, and concentrated on knitting and chatting I was going to leave at about 5pm and thought I'd leave her with the athletics on TV.....
However! I found that not only is she unsure how to use the remote, but it wasn't working at all....the batteries were leaking acid The thing is, she wouldn't have told me, it was pure accident that I discovered that she in effect has no TV....this is an example of the reason I'm so worried, I have to find everything out...
Anyway, it's an old set and we have decided to replace the whole thing. I've just found one on JL website, it will be delivered on Saturday between 7.30am and 6pm At least mum will then have access to news and entertainment....I'll programme in the Flipper remote while I'm at it if I can
Thanks Sue for the prepared meal idea I used to take stews last winter but kind of lost the plot with summer food. Will start this up again. (There are no meals on wheels in our area, sadly).
Pickles, thank you for your post. You may be right, mum is only happy when we are drinking tea, reminiscing, knitting etc. When it comes to practical arrangements it is very hard for her to be happy. But I'll keep on trying
Good night and God bless all
Lindy xx
I was absolutely determined that today's visit to mum would be more positive. I avoided any conversation to do with needs or help, and concentrated on knitting and chatting
I was going to leave at about 5pm and thought I'd leave her with the athletics on TV.....However! I found that not only is she unsure how to use the remote, but it wasn't working at all....the batteries were leaking acid
The thing is, she wouldn't have told me, it was pure accident that I discovered that she in effect has no TV....this is an example of the reason I'm so worried, I have to find everything out...Anyway, it's an old set and we have decided to replace the whole thing. I've just found one on JL website, it will be delivered on Saturday between 7.30am and 6pm
At least mum will then have access to news and entertainment....I'll programme in the Flipper remote while I'm at it if I can Thanks Sue for the prepared meal idea
I used to take stews last winter but kind of lost the plot with summer food. Will start this up again. (There are no meals on wheels in our area, sadly).Pickles, thank you for your post. You may be right, mum is only happy when we are drinking tea, reminiscing, knitting etc. When it comes to practical arrangements it is very hard for her to be happy. But I'll keep on trying
Good night and God bless all
Lindy xx
Hi everyone
It’s been a while since I last posted but I’m a bit confused and could do with some more advice.
I took my mum back to the memory clinic for a 6 month check-up last week. Although she hasn’t got any worse they have now decided to put her on Aricept (although I’m still not convinced she will remember to take the tablets).
However more confusingly they said that they had relooked at her brain scan from 4 years ago. At that time the doctors said that there were no abnormalities showing and that she had mild cognitive impairment. Then when we went back in the summer there was no mention of the brain scan but they said she had Alzheimer’s.
But now a different doctor is saying that the scan shows signs of historic multi-infarct dementia ie little mini strokes that have caused damage. I assume having done a bit of reading that this is vascular dementia? But they still prescribed the Aricept and I just read that this can make multi infarcet dementia worse, or at least increase the risk of strokes.
I know I should have asked the doctor more questions at the time but I was kind of shocked and also talking about Alzheimer’s and dementia is still hard to do in front of my mum. Is vascular worse, better or the same as Alzheimer’s and should I be pressing for different medication or a further scan? Can you have both types of dementia and if so is what is the best type of care?
Thanks in advance.
It’s been a while since I last posted but I’m a bit confused and could do with some more advice.
I took my mum back to the memory clinic for a 6 month check-up last week. Although she hasn’t got any worse they have now decided to put her on Aricept (although I’m still not convinced she will remember to take the tablets).
However more confusingly they said that they had relooked at her brain scan from 4 years ago. At that time the doctors said that there were no abnormalities showing and that she had mild cognitive impairment. Then when we went back in the summer there was no mention of the brain scan but they said she had Alzheimer’s.
But now a different doctor is saying that the scan shows signs of historic multi-infarct dementia ie little mini strokes that have caused damage. I assume having done a bit of reading that this is vascular dementia? But they still prescribed the Aricept and I just read that this can make multi infarcet dementia worse, or at least increase the risk of strokes.
I know I should have asked the doctor more questions at the time but I was kind of shocked and also talking about Alzheimer’s and dementia is still hard to do in front of my mum. Is vascular worse, better or the same as Alzheimer’s and should I be pressing for different medication or a further scan? Can you have both types of dementia and if so is what is the best type of care?
Thanks in advance.
You can easily have vas dem and Alzheimer's, in fact, as these are the two most common types of dementia they are often found together. My OH has both, diagnosed 7 years ago. He was put on aricept immediately and still takes it. I would not say aricept increases TIA's. Some drugs do ( Quetiapine , an anti-psychotic) was one.
The difference between the two types is that Alzheimer's gives a slow, steady decline, whereas vas dem gives a step-like decline, each step corresponding to a TIA. Having said this, it's seems to be only the 'bigger' TIA 's that seem to have an effect. The smaller ones seem not to make a difference in the long run.
However, the saying is, if you've seen one person with dementia, you've seen one person with dementia, meaning everyone is different. People react to drugs differently as well.
Having said all this, good luck!
The difference between the two types is that Alzheimer's gives a slow, steady decline, whereas vas dem gives a step-like decline, each step corresponding to a TIA. Having said this, it's seems to be only the 'bigger' TIA 's that seem to have an effect. The smaller ones seem not to make a difference in the long run.
However, the saying is, if you've seen one person with dementia, you've seen one person with dementia, meaning everyone is different. People react to drugs differently as well.
Having said all this, good luck!
Hi everyone
Mr Rusty, you could be talking about my mother - we seem to be going through all the same difficulties with her. She also had a scan about a year ago which showed small dark areas which I now understand could be the result of mini strokes. These didn't seem to bother the consultant at the time who diagnosed her with the dreaded mild cognitive impairment. She has now been diagnosed with Alzheimer's which seems to almost have caused more problems than been of help - I mean since the diagnosis she has become more defensive and gives my poor elderly father hell at times - bless him, he tries so hard!
Thank you all you kind kind people out there who share your difficult times on this forum so that others like me can understand that we are not alone - sometimes I feel dreadfully inadequate and SO frustrated. It's very hard to put yourself into the mindset of one with dementia in order to work out what planet they are on half the time - last week we were at boarding school in the late 40's!!
Mr Rusty, you could be talking about my mother - we seem to be going through all the same difficulties with her. She also had a scan about a year ago which showed small dark areas which I now understand could be the result of mini strokes. These didn't seem to bother the consultant at the time who diagnosed her with the dreaded mild cognitive impairment. She has now been diagnosed with Alzheimer's which seems to almost have caused more problems than been of help - I mean since the diagnosis she has become more defensive and gives my poor elderly father hell at times - bless him, he tries so hard!
Thank you all you kind kind people out there who share your difficult times on this forum so that others like me can understand that we are not alone - sometimes I feel dreadfully inadequate and SO frustrated. It's very hard to put yourself into the mindset of one with dementia in order to work out what planet they are on half the time - last week we were at boarding school in the late 40's!!
Thanks for the replies. She is on a two week trial of Aricept so we will just have to see how that goes. I guess even if it is Vasc then there is nothing else to be done to help. She does'nt seem to have any step changes as of yet which is a blessing.
On another note -and maybe this isnt the right thread to post in but I fear I may have also messed up re DVLA. In June when she had her diagnosis the doctor said that we should inform DVLA and they would then assess her driving. This didn't go down well with mum and I've only just convinced her to sign the medical form. However just rereading the DVLA guidelines it says you may be liable for a £1000 fine if you don't tell them right away. I know its completely my fault for not reading this earlier and insisting that she signed immediately after diagnosis and I'm feeling terrible - do think we will be fined?
On another note -and maybe this isnt the right thread to post in but I fear I may have also messed up re DVLA. In June when she had her diagnosis the doctor said that we should inform DVLA and they would then assess her driving. This didn't go down well with mum and I've only just convinced her to sign the medical form. However just rereading the DVLA guidelines it says you may be liable for a £1000 fine if you don't tell them right away. I know its completely my fault for not reading this earlier and insisting that she signed immediately after diagnosis and I'm feeling terrible - do think we will be fined?
No Mr Rusty, I don't think you will be fined there are extenuating circumstances, they know now is the main thing.
Thanks Sue, fingers crossed! I know the whole car thing is going to be a battle. She rarely drives it anymore but refuses to give the car up. Im sure she has now forgotten all about the forms so we will have to go over this all again when the DVLA reply. But I guess better that than she has an accident.
Hi everyone.
So we had a bit of a worrying incident recently. In our daily call a week ago on Monday evening mum told me that she had burned her face and couldn’t see anything. But she couldn’t remember how she had done it. I drove down and it did look as though she had leant over a boiling kettle or something, and her eyes were all closed up leaving puss, and her face looked scalded. Took her over to A&E and after being in there for over 20 hours they said it wasn’t a burn but was a reaction to something she must have rubbed on her face causing a burn like reaction and that her eyes were abraised and infected.
The discharge officer at the hospital said there were no district nurses available to her home and look after her and also there were no beds available at her local cottage hospital so they recommended using a private company called Home Instead and so far they have been great.
After lots of antibiotics and creams she can now see though her skin is still very dry. But the whole thing has been very upsetting for mum and it seems her short term memory has either got a lot worse or the stress has made her more confused than normal. She can’t remember what happened and last week was literally asks every ten minutes what is wrong with her face and eyes.
I’m wondering what to do next. She can still wash dress and feed herself, and she tells me she isn’t lonely but I can tell she seems a bit fed up – she keeps saying she doesn’t know how she has ended up like this. She even said last week she wished she was dead which is very out of character for her. She seems to perk up when the care workers come in (currently twice a day). So do you think I need to start looking at care homes? I don’t know if this is too premature yet though. She has significant savings so I don’t think she would be eligible for any financial assistance. But then those savings would probably soon get eaten up if I have to put her into care now. So is it better to continue with the Home Instead people. I just don’t know what to do for the best. I wonder if there is someone that could come and assess her to see what we should do next?
Thanks as ever for reading.
So we had a bit of a worrying incident recently. In our daily call a week ago on Monday evening mum told me that she had burned her face and couldn’t see anything. But she couldn’t remember how she had done it. I drove down and it did look as though she had leant over a boiling kettle or something, and her eyes were all closed up leaving puss, and her face looked scalded. Took her over to A&E and after being in there for over 20 hours they said it wasn’t a burn but was a reaction to something she must have rubbed on her face causing a burn like reaction and that her eyes were abraised and infected.
The discharge officer at the hospital said there were no district nurses available to her home and look after her and also there were no beds available at her local cottage hospital so they recommended using a private company called Home Instead and so far they have been great.
After lots of antibiotics and creams she can now see though her skin is still very dry. But the whole thing has been very upsetting for mum and it seems her short term memory has either got a lot worse or the stress has made her more confused than normal. She can’t remember what happened and last week was literally asks every ten minutes what is wrong with her face and eyes.
I’m wondering what to do next. She can still wash dress and feed herself, and she tells me she isn’t lonely but I can tell she seems a bit fed up – she keeps saying she doesn’t know how she has ended up like this. She even said last week she wished she was dead which is very out of character for her. She seems to perk up when the care workers come in (currently twice a day). So do you think I need to start looking at care homes? I don’t know if this is too premature yet though. She has significant savings so I don’t think she would be eligible for any financial assistance. But then those savings would probably soon get eaten up if I have to put her into care now. So is it better to continue with the Home Instead people. I just don’t know what to do for the best. I wonder if there is someone that could come and assess her to see what we should do next?
Thanks as ever for reading.
Looking around at care homes is a timeconsuming exercise so it will do no harm to start now. At least if there is an emergency and a care home is needed at least you will be prepared. We have a few homes in mind for MIL but meantime we are doing everything we can to keep her in her sheltered flat with the aid of carers.
