Don’t forget not to ask me to remember…

[RobinH]

My mother’s life is full of anxiety, and some of it is caused by well intentioned people who should know better. How come?

Mum has mild dementia, probably vascular. She lives alone in the family home since dad died 4 years ago. She is determined to stay in her home of 43 years as long as she can. She has regular activities 5 days a week, plus visits from me, a family friend and a volunteer befriender. The aim is for her never to have an empty day. She has meals on wheels, lifts to her clubs, morning and evening care visits, a Nomad box for her medication. I recently bought a Truecall box to stop nuisance calls.

My theory is that dementia can be a bit like alcohol – it seems to accentuate the character of the person. In adult life mum was timid but happy, likeable, anxious, with no real education or grasp of the world. That’s what she’s like now, but more so. Everyone loves her, she smiles and laughs a lot, but she cries in despair every day, and honestly I don’t know how much of the time she’s alone is spent crying. Maybe a lot.

Mum remembers who people are, she knows her own history, but her short term memory is shot – I don’t need to tell you that, but then again it seems I do! I’ve read that the emotional functions of the brain are the last to go. Mum is quite emotional – both ups and downs.

So, this is what happens when someone in her life tells her something important..

One of her clubs has an activity coming up. They tell her about it a lot. They tell her it’s important, that she mustn’t forget. They may write it down and give her the paper. That paper may get stuffed in her handbag, or lost. Within a minute of being told something, it is forgotten. What stays is the emotion – in her case, a nagging feeling that she has something important to do, but doesn’t know what it is. Anyone with an anxious or nervous personality will recognise that this is misery for her.

The sad thing is, these people work for age or dementia charities, social services, the NHS, or in organisations who’s members are nearly all old. Every last one of them should know better, but they don’t.

Imagine raising a child with a disability – legs don’t work, for instance. It would be cruel beyond belief to ask the child to do things beyond their ability – things they will never be able to do. Peter, why don’t you sprint 100 metres? Go on, try hard! Oh, didn’t you make it? Try again!

Asking mum to do things she will never again be able to do is cruel, and makes her very unhappy. As someone who spends a great deal of time trying to do the opposite, I can’t tell you how frustrating it is to have people close to her pulling in the opposite direction.

So..

Don’t
• Ask her to remember things
• Tell her detail
• Tell her it’s important

Do

• Give the information to her carer
• Tell mum that it’s all under control, that she doesn’t need to remember. That it’s not her fault.
• Tell her you care for her, will always look after her, even if she doesn’t remember
• Tell her that last time she did whatever, she really enjoyed it
• Be calm, and give the impression she is safe in your hands

One last story. Recently mum confused her microwave with her dishwasher… She was heating up a ready meal, and called to me that the microwave hadn’t emptied all the water out. I thought that was odd. When I got to the kitchen, she was befuddled.

I remembered what a child does sometimes when they have a small fall – they look at their parent for reassurance. In that moment, they are deciding how bad things are – they could start crying, or get up smiling and do it all again. I looked at mum, gave her a friendly nudge on the shoulder, and laughed. She laughed. It was fine.

 

[Izzy]

I know what you mean about people telling the sufferer things. The dentist knows he has dementia yet phoned howherefore the carer arrived and told Bill his appointment had. Edn cancelled. The carer arrived hit him ready and took him across town for his appointment! Aaargghh!!

 

[2TT charlie]

RobinH, you're so right. I tried to drum it into my mother last year that there was no point in asking my father to remember when his memory was shot, because his brain simply didn't work that way any more. I took over taking him to apointments and made sure he knew that I had it all in hand and would be there whenever he needed to go anywhere. Sadly she kept expecting him to be normal and because she also had speech difficulties would shout at him as if he couldn't hear her, when the problem was that he couldn't remember.

My theory is that dementia can be a bit like alcohol – it seems to accentuate the character of the person. In adult life mum was timid but happy, likeable, anxious, with no real education or grasp of the world. That’s what she’s like now, but more so. Everyone loves her, she smiles and laughs a lot, but she cries in despair every day, and honestly I don’t know how much of the time she’s alone is spent crying. Maybe a lot.

Yes, it seems to remove the veneer of inhibitions and learnt behaviours and what's left is the base personality. My father is often worried that he's done something wrong and I can hear him calling himself stupid and generally beating himself up over not doing things. Because there's not a lot he can 'do' any more and he doesn't fancy doing much anyway, I suggest he 'does his chin' (shaves) or we go out for a drive because I *have* to do some shopping. This seems to satisfy his sense of getting things done for the day.

Do

• Give the information to her carer
• Tell mum that it’s all under control, that she doesn’t need to remember. That it’s not her fault.
• Tell her you care for her, will always look after her, even if she doesn’t remember
• Tell her that last time she did whatever, she really enjoyed it
• Be calm, and give the impression she is safe in your hands

This. Fortunately I'm with him all the time, so he knows I've got it under control. I count it a success whenever he comes to me because he can't work something out for himself or asks for help, rather than getting more frustrated with himself. And I try to make it clear he's done well to ask for help, though it's against his instincts.

One last story. Recently mum confused her microwave with her dishwasher… She was heating up a ready meal, and called to me that the microwave hadn’t emptied all the water out. I thought that was odd. When I got to the kitchen, she was befuddled.

I remembered what a child does sometimes when they have a small fall – they look at their parent for reassurance. In that moment, they are deciding how bad things are – they could start crying, or get up smiling and do it all again. I looked at mum, gave her a friendly nudge on the shoulder, and laughed. She laughed. It was fine.

Perhaps because he tells himself off so much, I spend most of the day telling him he's doing very well and even opening the front door or getting in the car, is a 'good job, well done'. Deciding it's time to go to bed, shutting the curtains, getting out of a chair - 'good job, father, well done'. Anything that goes wrong is 'not a problem', 'must be the weather', especially if he's upset with himself. It's amazing what effect the British weather can have on even the simplest things, but there, what can we do?

 

[Grannie G]

Hello Robin.

You are a lovely son.

 

[leedsfan]

My mother’s life is full of anxiety, and some of it is caused by well intentioned people who should know better. How come?

Mum has mild dementia, probably vascular. She lives alone in the family home since dad died 4 years ago. She is determined to stay in her home of 43 years as long as she can. She has regular activities 5 days a week, plus visits from me, a family friend and a volunteer befriender. The aim is for her never to have an empty day. She has meals on wheels, lifts to her clubs, morning and evening care visits, a Nomad box for her medication. I recently bought a Truecall box to stop nuisance calls.

My theory is that dementia can be a bit like alcohol – it seems to accentuate the character of the person. In adult life mum was timid but happy, likeable, anxious, with no real education or grasp of the world. That’s what she’s like now, but more so. Everyone loves her, she smiles and laughs a lot, but she cries in despair every day, and honestly I don’t know how much of the time she’s alone is spent crying. Maybe a lot.

Mum remembers who people are, she knows her own history, but her short term memory is shot – I don’t need to tell you that, but then again it seems I do! I’ve read that the emotional functions of the brain are the last to go. Mum is quite emotional – both ups and downs.

So, this is what happens when someone in her life tells her something important..

One of her clubs has an activity coming up. They tell her about it a lot. They tell her it’s important, that she mustn’t forget. They may write it down and give her the paper. That paper may get stuffed in her handbag, or lost. Within a minute of being told something, it is forgotten. What stays is the emotion – in her case, a nagging feeling that she has something important to do, but doesn’t know what it is. Anyone with an anxious or nervous personality will recognise that this is misery for her.

The sad thing is, these people work for age or dementia charities, social services, the NHS, or in organisations who’s members are nearly all old. Every last one of them should know better, but they don’t.

Imagine raising a child with a disability – legs don’t work, for instance. It would be cruel beyond belief to ask the child to do things beyond their ability – things they will never be able to do. Peter, why don’t you sprint 100 metres? Go on, try hard! Oh, didn’t you make it? Try again!

Asking mum to do things she will never again be able to do is cruel, and makes her very unhappy. As someone who spends a great deal of time trying to do the opposite, I can’t tell you how frustrating it is to have people close to her pulling in the opposite direction.

So..

Don’t
• Ask her to remember things
• Tell her detail
• Tell her it’s important

Do

• Give the information to her carer
• Tell mum that it’s all under control, that she doesn’t need to remember. That it’s not her fault.
• Tell her you care for her, will always look after her, even if she doesn’t remember
• Tell her that last time she did whatever, she really enjoyed it
• Be calm, and give the impression she is safe in your hands

One last story. Recently mum confused her microwave with her dishwasher… She was heating up a ready meal, and called to me that the microwave hadn’t emptied all the water out. I thought that was odd. When I got to the kitchen, she was befuddled.

I remembered what a child does sometimes when they have a small fall – they look at their parent for reassurance. In that moment, they are deciding how bad things are – they could start crying, or get up smiling and do it all again. I looked at mum, gave her a friendly nudge on the shoulder, and laughed. She laughed. It was fine.

Hi Robin, Your Mum is so lucky to have you as her son and carer. You sound absolutely amazing and today I'm going to do my best for my Dad. Thanks for the inspiration.

We are going to try swimming again today after 12 months of not going. It will be a challenge for both of us but he is so looking forward to it. Bought him a 'Noodle' for Fathers Day. It's a long foam tube that will support him in the pool. The Physio suggested it to us. I feel a bit sad that this once great swimmer has to turn to this but he seems happy to go along with it and because of his balance and mobility problems he really will need it.

Wish us luck.

Jane

 

[fluff]

Asking mum to do things she will never again be able to do is cruel, and makes her very unhappy. As someone who spends a great deal of time trying to do the opposite, I can’t tell you how frustrating it is to have people close to her pulling in the opposite direction.

So..

Don’t
• Ask her to remember things
• Tell her detail
• Tell her it’s important

Can I add
Send her the letter detailing an appointment - right after you have spoken to the carers and agreed such things will be sent directly to them - and then simply remove her from your list as not needing attention, because nobody shows up

I think you show great understanding. In the earlier stages, m-i-l's sons (my husband too, despite being told!) upset themselves and her by trying to convince her to think logically. They could not come to terms with the changes.

 

[Katrine]

We take a photocopy of appointment letters and then if MIL's original gets lost we have the details. If she gets agitated about it and keeps ringing us then we take the letter away. Otherwise she keeps reading and re-reading it, worried that she has to 'do something'. It must be so distressing to keep coming across a letter as if it was a new thing, not remembering that someone has agreed to take you; it's like groundhog day.

We also ask to be copied in for appointments, but this is always hit and miss. Recently MIL was sent a letter asking her to have a specific blood test to check for diabetes, with no context as to why this was needed. We had other medical irons in the fire at the time and assumed it was part of the process of providing information to the CMHT psychiatrist. We explained to the GP that there was a problem getting compliance with fasting so was this test really necessary, and the GP said it was OK not to do it.

Then MIL got a reminder letter about an annual health check which we decided to do as well, on the advice of the GP. When I went to arrange the appointment they said she'd already missed one appointment The practice nurse had sent MIL the form for the diabetes blood test, by post, but had not enclosed an appointment letter with date and time because she had agreed the details of the appointment with MIL over the telephone. Do they not think, why has this patient missed the appointment? No, they just send out a second reminder letter to her, and even that didn't say "you've missed one appointment", so we were none the wiser.

Firstly the surgery should have copied us in to the invitation letter but it's just a round robin they send to a lot of people so nobody bothered to check her notes online. Secondly the surgery is supposed to ring me, or her daughter, if she requests medical treatment by herself, but because she rang the nurse not the receptionist the nurse didn't bother to to check her notes.

Well I suppose the nurse thought that if she told her that it was very important, and she must write it down immediately, she would remember it.

 

[lin1]

Hello Robinh agree

=fluff;597695]

I think you show great understanding.

also a great deal of compassion and knowledge

You would think wouldnt you that professional people who work with those that have Dementia, would have a better understanding and knowledge wouldnt you, sadly I found the opposite was often the case and the worst of it is, they often think they know better than us

May be you should print out some copies of your post above plus the relevant parts of our replies, and give it to all concerned

May be also a copy of this
Compassionate comunication with the memory impaired, wouldnt go amiss,Well you can but hope cant you
http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

I would also add to the letter a clear instruction NOT to give your mum any info or ask mum to remember as due to the BRAIN DAMAGE that dementia causes mum cant remember such details, its not just that she is a bit forgetfull

I like most other here found that though the memory of the incident/info has gone
the feelings or memory of the the anxiety etc remain for a long time

 

[Josieb]

Robin, absolutely spot on, for a moment I thought I had written your post it's a near mirror of me and my mum. I was also having a problem with people well meaning but making my mum distressed. I got around the problem (well nearly) by printing out the compassionate communication and giving it to anyone who I think will inadvertently cause a problem.

I now understand how I react to what my mum does reflects on her behaviour. I am quite volatile and can be a bit sharp (guess where i learnt that) so I have had to learn not to react and make light of everything. I find it a bit stressful at times but it has made such a difference to our relationship.

 

[Katrine]

A good experience

I took MIL to the optician this week. The man who saw her to arrange for new frames was so lovely and was friendly without being patronising. He gave answers to repeated questions as if it was the first time he had been asked. There was no tone of exasperation in his voice - and we all know how easy it is for that note to creep in, giving the message that the person is stupid, or not listening, and that they are wasting your valuable time.

He responded to "I can't see as well with this pair" (just a sample pair with clear lenses) by saying that if she liked the frames he would have them made up with her prescription so she would be able to see really well with them. He responded to "I don't like these ones, they're too long, they make my hair stick up" with "the arms need shortening on those ones for you. If you like those frames I will adjust them to fit you exactly."

He listened to her explaining about an eye problem by just letting her speak, and making sympathetic mmm noises. He didn't say "there's nothing I can do about that" or "yes, you've been told a million times that you have a medical condition that causes that". I was the one getting tetchy and saying "you've got eye drops in your bag, if you use them then your eyes will feel better". Well, we'd had the conversation about the scratchy eyes and the need for eye drops about 10 times already that morning, but I have no excuse for my impatience, being annoyed wasn't going to help her remember any better was it?

The optician man did better than me. When the story about the scratchy eyes was repeated for the third time he just said "your eyes don't make tears with quite the right cocktail of ingredients, so you need help from eye drops". MIL: "Where do I get these eye drops from? I don't think I have any." Me thinking, but not saying "You have boxes of b***y eye drops in your kitchen, and you used the ones in your handbag only 20 minutes ago!"

When MIL had chosen her frames the man carried on with his measurements and checks with an air of practiced calm, and made the whole process seem absolutely normal. MIL left the shop feeling like a responsible adult who had arranged something for herself without any problems. She commented to me on how she had been treated (in a somewhat garbled fashion) but the meaning was - I was treated with respect - I did not feel anxious - I enjoyed the experience - I feel I have achieved something.

BTW, while MIL was being seen for her eye test, the spectacles man was talking quietly on the phone to someone about a close relative who was experiencing problems with 'the authorities' and although the conversation was 'in code' it was obvious to me that the person he was talking about has dementia. What a splendid life skill in compassionate communication this man has developed through his own difficult circumstances.

 

[Josieb]

Katrine what a nice place to go, wish we lived near there.

 

[amicalia]

Like others here I so agree RobinH - wish people would not phone my mum with information, send her appointments, and most of all I wish her neighbour wouldn't try and tell her things too far in advance, there is no point at all, just makes mum agitated and twitchy as she has that feeling of 'I have to go somewhere' without knowing when/where.
Love Katrine's happier tale - it is a shame it is relatively rare to encounter people who handle things as well as that optician.

 

[tre]

Dear Robin,
I loved your post. You are putting yourself in your mum's world rather than trying to rationalise in a way she cannot. I totally agree with you that some things make the dementia sufferer more agitated rather than less and the important thing is to keep the stress levels down. If you look at some of the posts regarding people going into respite most advice is not to say too far in advance as it just causes upset which is a similar conclusion to that you have come to with your mum being worried about remembering stuff and getting upset. In fact I think putting this kind of pressure makes it less likely she will remember rather than more as her head just fills up with worrying.
I have just had a carers assessment and my husband is to have an extra day at daycare making three days a week. I feel it will be a godsend for me but that he may get agitated. My mentor who has been on this journey before said to me " does your husband know what day it is?" Answer no. " Does he remember what he did yesterday?" Again answer no- well in which case why do you feel the need to tell him he is going to have an extra day at daycare as it will only agitate him. I feel this would be a good approach and I will contact daycare on Monday and see if they will go along with not mentioning he is now having an extra session. I do not know what they will think but I just want him not to be stressed and if he is stressed I am stressed so this is self defeating.
You are a really understanding son
with best wishes,
Tre

 

[Portia]

Thanks for this info about the memory forgetting, but the emotion staying. It's something which (only now) makes complete sense to me.
I'm going to keep it in my mind, as I think I am guilty of adding anxiety to my Aunts world by giving her too much detail/info.
I think I'm being informative & chatty, but it may well be info overload...

 

[melz]

My mum is in much the same position as yours, although living with us, and without the friends and charities helping on a daliy basis. I completely agree with all of your comments. You show a lot of insight, and your mum is lucky to have your balanced care and outlook.
Unfortunately you have hit the nail on the head. Even trained people, and so called sympathisers dont often see the whole picture. Dementia is a different world, that people find hard to dip in and out of. We, on the other hand have to live with it 24/7. I think we have to be patient with support workers as they do have our best interests at heart. A medal is deserved by us all!

 

[Anne&C]

You are a lovely son.

What Grannie G said!

 

[cragmaid]

The one thing that has helped us is that I changed the mailing address for Mum to my house, so that the Doctors/Opticians etc all have only one address for post. I also tell everyone to confirm with me any changes of details, by making sure they all have MY phone number instead of Mum's. I am lucky in a way ( !!! ) because Mum is now blind and I have been dealing with her mail for some time.

 

[Amber]

So true. My Mum is 7 years into her vascular dementia and a few months ago her GP rang her and told her she needed a blood test. I only got to know about it, even though I am noted as first contact on all her files, because my mum had managed to write down the word 'test' before it went completely out of her head. Obviously when I saw the scrap of paper with 'test' written on it, it took me 2 days to track down what test it was and who had rang, eventually arranging for the district nurse to call to do it who in turn rang my mum the evening before the blood test to tell her it was a fasting blood test so to make sure she didn't have breakfast! needless to say my mum forgot to tell me and forgot not to have any breakfast, forgot about the blood test altogether and it was only when I rang the GP to ask for the results that I was told that the district nurse had not yet managed to do the blood test as my mum had kept eating breakfast before the nurse had arrived. It was only when I stormed down to the surgery and complained (not very politely) that although they knew full well that my mum has dementia they were not acknowledging it at all! It was so frustrating and was not the first incident of its kind and has certainly not been the last. Family, friends and neighbours all communicate with my mum in the present moment, they do not ask her things or question her, it's always been the professionals who have expected, demanded or assumed more of my Mum than the dementia allows her to give and it's time they understood the illness that is dementia.

 

[SJW]

Thank you for making a connection

I have been registered for over 2 years and now my dear dad is changing quite quickly. Reading this post from Robin has made a connection with me. Thank you as this will help me to help my dad in a positive manner. This is my first reply and hope I've done this correctly!

My mother’s life is full of anxiety, and some of it is caused by well intentioned people who should know better. How come?

Mum has mild dementia, probably vascular. She lives alone in the family home since dad died 4 years ago. She is determined to stay in her home of 43 years as long as she can. She has regular activities 5 days a week, plus visits from me, a family friend and a volunteer befriender. The aim is for her never to have an empty day. She has meals on wheels, lifts to her clubs, morning and evening care visits, a Nomad box for her medication. I recently bought a Truecall box to stop nuisance calls.

My theory is that dementia can be a bit like alcohol – it seems to accentuate the character of the person. In adult life mum was timid but happy, likeable, anxious, with no real education or grasp of the world. That’s what she’s like now, but more so. Everyone loves her, she smiles and laughs a lot, but she cries in despair every day, and honestly I don’t know how much of the time she’s alone is spent crying. Maybe a lot.

Mum remembers who people are, she knows her own history, but her short term memory is shot – I don’t need to tell you that, but then again it seems I do! I’ve read that the emotional functions of the brain are the last to go. Mum is quite emotional – both ups and downs.

So, this is what happens when someone in her life tells her something important..

One of her clubs has an activity coming up. They tell her about it a lot. They tell her it’s important, that she mustn’t forget. They may write it down and give her the paper. That paper may get stuffed in her handbag, or lost. Within a minute of being told something, it is forgotten. What stays is the emotion – in her case, a nagging feeling that she has something important to do, but doesn’t know what it is. Anyone with an anxious or nervous personality will recognise that this is misery for her.

The sad thing is, these people work for age or dementia charities, social services, the NHS, or in organisations who’s members are nearly all old. Every last one of them should know better, but they don’t.

Imagine raising a child with a disability – legs don’t work, for instance. It would be cruel beyond belief to ask the child to do things beyond their ability – things they will never be able to do. Peter, why don’t you sprint 100 metres? Go on, try hard! Oh, didn’t you make it? Try again!

Asking mum to do things she will never again be able to do is cruel, and makes her very unhappy. As someone who spends a great deal of time trying to do the opposite, I can’t tell you how frustrating it is to have people close to her pulling in the opposite direction.

So..

Don’t
• Ask her to remember things
• Tell her detail
• Tell her it’s important

Do

• Give the information to her carer
• Tell mum that it’s all under control, that she doesn’t need to remember. That it’s not her fault.
• Tell her you care for her, will always look after her, even if she doesn’t remember
• Tell her that last time she did whatever, she really enjoyed it
• Be calm, and give the impression she is safe in your hands

One last story. Recently mum confused her microwave with her dishwasher… She was heating up a ready meal, and called to me that the microwave hadn’t emptied all the water out. I thought that was odd. When I got to the kitchen, she was befuddled.

I remembered what a child does sometimes when they have a small fall – they look at their parent for reassurance. In that moment, they are deciding how bad things are – they could start crying, or get up smiling and do it all again. I looked at mum, gave her a friendly nudge on the shoulder, and laughed. She laughed. It was fine.

 

[Dol]

don't forget not to ask me to remember

My mother, who has Alzheimers, when she was still living alone with carers and me dropping in, developed a breast lump. She refused to go to the doctor about it or the hospital. I arranged for a hospital visit and told them the circumstances. I did not tell my mother we were going to the hospital re breast lump - I was going to get her there with another story - probably to do with her arthritis - so as not to worry her. Then a day before the event a nurse from the hospital rang her to remind her of her appointment at the breast cancer clinic. My mother freaked out and would not get into a car for days. When I asked the hospital if they had not filed my letter to them explaining she had Alzheimers they said that the computer system could not be 'updated' and my letter had gone into the paper files- which no one ever looked at. My mother never did get to see a specialist. A long time later when in a care home a GP put her on tamoxifen and the lump went away. They are pretty certain it was breast cancer.