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Mum is Hallucinating

ruby60 s

New member
Jun 15, 2020
2
hi i am new to all this .my mum as lewey body dementia , and is still at her own home were i want her to remain , but i am finding this hard to deal with she keeps phoning ambulances out and police saying people are not breathing , I dont think she sleeps well at night she says people are in the house which must be frightening for her i am so upset over her . she as fought this for over a year now .anyone else feel like me angry , upset unhappy everday .
 

karaokePete

Registered User
Jul 23, 2017
5,544
N Ireland
Hello and welcome @ruby60 s.

Unfortunately what you are feeling is par for the course in a carers life. This means that you are among people who understand and you will get support here.

If this is a recent deterioration an infection like a UTI may be the cause so it's worth consulting the GP.

Apart from that anxiety and depression are common in dementia so that may be an issue. My wife if prone to hallucinations and she is treated separately for both those disorders as well as her dementia. Again, the GP may be of help.

Now that you have found us please keep posting for support.
 

ruby60 s

New member
Jun 15, 2020
2
hi thanks for that my mum is on lots of medication for depression and anxiety too ,she has a test for UTI which came back negative .so it is part of the illness i guess . I dont live with my mum but live next door so i am on hand most of the time apart from when i am at work , I just wish could have my old mum back as she no longer feels like my mum , do sometimes think she behaves selfish and that was not who my mum was. i feel as though my life is on hold i feel very mixed up angry upset guilty. does anyone else feel like me
 

canary

Registered User
Feb 25, 2014
12,844
South coast
Hi @ruby60 s
I just wish could have my old mum back as she no longer feels like my mum , do sometimes think she behaves selfish and that was not who my mum was. i feel as though my life is on hold i feel very mixed up angry upset guilty. does anyone else feel like me
You have just described exactly what it is like to be a carer for someone with dementia. I think we all feel like that. Dementia was once described as being the "long goodbye" and this accurately describes the way you are losing them, bit by bit.

What you are experiencing is called Anticipatory Grief. You are grieving for your loved one who is gone, and yet still here.
((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
 

PMM1485

Registered User
Dec 16, 2018
21
You have described just exactly how I feel. Mum has had hallucinations for about two years now but they have ramped up in the past few months. She had now gone into a care home where I feel she has become even more distant from me because I have no idea what is real and what is not. Last night she told me the care home would be on a tv programme and they were all very excited. I watched all night but of nothing was on, it just seemed so plausible. She is safe there though and well looked after.
I try hard to go along with the delusions but it is hard to know what to do in the case of paranoia. She thinks the house is being sold and carers are locking her in so surely it would be more destructive to go along with that.
Above all I am finding it hard to deal with the sadness. Sad that I can't reach her anymore, sad she is not my 'go to' person, sad she is so unhappy and feels so hopeless, sad I can't do anything to help. So I totally understand where you are coming from. Not sure that helps much except to say you aren't alone, many of us feel the same. Xx
 

LuLuP

Registered User
Apr 3, 2020
11
You have described just exactly how I feel. Mum has had hallucinations for about two years now but they have ramped up in the past few months. She had now gone into a care home where I feel she has become even more distant from me because I have no idea what is real and what is not. Last night she told me the care home would be on a tv programme and they were all very excited. I watched all night but of nothing was on, it just seemed so plausible. She is safe there though and well looked after.
I try hard to go along with the delusions but it is hard to know what to do in the case of paranoia. She thinks the house is being sold and carers are locking her in so surely it would be more destructive to go along with that.
Above all I am finding it hard to deal with the sadness. Sad that I can't reach her anymore, sad she is not my 'go to' person, sad she is so unhappy and feels so hopeless, sad I can't do anything to help. So I totally understand where you are coming from. Not sure that helps much except to say you aren't alone, many of us feel the same. Xx
Is your mum's diagnosis lewy body dementia or is it alzheimer's? The medics seem to be wavering between the two diagnoses with my husband, the key issue being his persistent hallucinations. I tend not to go along with the delusions and paranoia - they are not true, so why should I agree with them? However I try not to challenge directly either - a quick change of subject sometimes works.
 

PMM1485

Registered User
Dec 16, 2018
21
Is your mum's diagnosis lewy body dementia or is it alzheimer's? The medics seem to be wavering between the two diagnoses with my husband, the key issue being his persistent hallucinations. I tend not to go along with the delusions and paranoia - they are not true, so why should I agree with them? However I try not to challenge directly either - a quick change of subject sometimes works.
Mum's diagnosis is vascular dementia. I did wonder about Lewy Body but the doctors have ruled that out. It was just odd that the hallucinations were our first inducation that something was wrong.

I get the impression hallucinations can come with any form. I go along with delusions generally it's the ones that cause anxiety I find tricky to deal with which is frankly many of them. Mum was always anxious and this has made them much worse.
UTI cleared up but delusions still prevalent. People say it can take months for the brain to recover, if it ever does.
 

Spamar

Registered User
Oct 5, 2013
7,374
Suffolk
Vascular dementia can bring on a whole load of different signs and symptoms, it all depends where in the brain the latest stroke or mini-stroke has occurred. And, of course, they can appear in any order. My OH had mixed dementia, vas dem plus Alzheimer’s, which is a common combination, but they are the two most frequent causes of dementia. I found it was better to deal with problems as they arose, not try to anticipate what the next problem might be!
Good Luck!
 

Fiona F

Registered User
Apr 12, 2020
34
56
Southampton
hi thanks for that my mum is on lots of medication for depression and anxiety too ,she has a test for UTI which came back negative .so it is part of the illness i guess . I dont live with my mum but live next door so i am on hand most of the time apart from when i am at work , I just wish could have my old mum back as she no longer feels like my mum , do sometimes think she behaves selfish and that was not who my mum was. i feel as though my life is on hold i feel very mixed up angry upset guilty. does anyone else feel like me

Hi, yes I absolutely feel just like you do! So do many others on this brilliant forum - I feel much less 'alone' since discovering it & sharing & reading what others are going through.

I wrestle with my feelings all the time - I get VERY frustrated, exasperated, angry, & feel VERY guilty. I know she can't help it, it's just the dementia. I do try to deal with things nicely & calmly but it gets to the point where I'm nearly tearing my hair out with frustration! My life feels on hold too, just like you said. Then I feel guilty for even saying that!

Like you, my mum lives very close by - her bungalow backs onto our house, so I'm only a few seconds away. I work full time but only a 2 minute walk round the corner. My mum is 90 with AD (possibly Lewy Body). She has had hallucinations for the past 3-4 years, apart from all the other behaviours that go with dementia.
I'm an only child & mum has no close family left. So all the responsibility falls on me (& my husband, but he doesn't get too involved apart from doing her admin & is joint POA with me).

Every day is like 'Groundhog Day' - I go round after work, dreading what I'll find today & what mess I'll find the toilet in. She'll be wearing strange mixtures of clothes, inside out, upside down, back to front, trousers round her neck like a scarf, a dress with the neck round her waist as though it was a skirt etc. I know it doesn't really matter, but it does upset me because she was always so elegant & fashion conscious, having trained in art & fashion, now she can't see that what she's wearing is odd. I hate seeing her like that. More & more often lately she's still in pyjamas - the carer leaves me a note to say she didn't want to get dressed. She moves stuff about the house all day long & puts things in very strange places - but of course it's not her, it's "the people" who move things & spill drinks all over the carpet.

She believes her tablet dispensing machine "Mr Ding" is a real living animal & gets upset if the sunlight is too bright in his eyes, & spends hours late at night trying to get him to bed! I've made him a bed from a shoebox with a furry scarf inside & another thing to cover him up with!! But she still faffs about until 1.00am trying to "settle him down". Like a child putting teddies to bed!

I don't know how I really feel any more but she doesn't feel like my mum, but like a toddler - impossible to reason with, doing & thinking silly & odd things all the time, having outbursts & tantrums, going on & on about these flipping "people" in her bed at night & other assorted people in the house during the day, she thinks her bathroom is a sort of public toilet so she's afraid to use the towels, flannels, toothbrush etc because she thinks they belong to someone else. No amount of me reassuring her that it's HER house, everything in it belongs to her, all the clothes are hers, nobody else sleeps in her bed or uses the bathroom etc etc etc. I know I should just go along with it all but after a long day at work, day after day after day, month after month, year after year, it all gets a bit much for me & I come back home feeling completely frazzled! (& guilty of course).

Good luck & keep using the forum.
 

Countryside1

Registered User
Jul 14, 2017
4
I can relate to everything above, 4 years now with my mum (77, VD).
Her dementia started, overnight it felt like, just after my dad died (they were divorced for 30 years!) I had been caring for him for 18 months, cycling to his flat 2 towns away twice a week, after he’d had a hip replacement and just never got back on his feet. I believe big stress events can trigger/exacerbate dementia. His post mortem, massive heart thrombosis, also mentioned dementia.
I’ve had a very close relationship with my mum, being the baby of 5. I was a teenage mum and she helped raise my daughter. Our large family was close, even though they divorced, and we did everything together for years (years I thought would go on forever).
Ive been grieving them both for 4 years now and she’s still here, in body. Most recently after very stressful worries with my teenage daughter I have got upset when I’m there seeing to mum and normally we would discuss it all through and she’d make me feel better, having brought up 5 of her own....but now she just watches me detached and blank as I wipe away my tears. I am learning a whole new one sided relationship with this disappearing woman I call mum. She is oblivious of her 4 other kids, only one other helps me with her. Tells me all the stuff in her house is what the people before left here (she’s been there 40 years). I could go on, as you all know, with a list of a thousand things that have happened in 4 years to chip away at who my mum used to be.In the earlier months I could pull positives from the negatives each day but there is so little of her left now it is very hard. Lockdown has taken it’s toll, no exercise, she lives alone in a house. The stairs are a constant worry, I have been twice a week to prepare food (she can’t do that now at all, not even cold food). She sleeps a lot and wakes up confused. Today calling me saying Where am I? I don’t know anything. I’m scared.............I am too.
It’s a nightmare that gets harder every day. Every day I want to run away like my siblings have. I wish we had money to put her in a nice home, but we don’t. I could then see her with quality instead of being exhausted cooking, cleaning, washing, shopping, Gardening etc etc for 2 households.
Sorry, so depressing. Apologies.
 

Fiona F

Registered User
Apr 12, 2020
34
56
Southampton
You poor thing - sounds like you're having an awful time. It's a terrible thing to see your mum slowly 'disappear' & a helpless, confused child emerge. My mum does the same, waking up saying she doesn't know who she is, where she is, scared & confused. These awful episodes of distress are made worse by her hallucinations, wobbliness & increasing problems with urgency to go to the loo & difficulty using the loo. It's very bad when she wakes up in the morning.

My heart sinks every day when I go round to see her after work & I'm full of hope that she might be more 'with it' today & then I find her still in pyjamas, looking all dishevelled & a note from the carer saying she didn't want to get dressed. I tidy up all the mess she's made during the day & put away all the clothes she's hoiked out of the wardrobes ........... but of course it's not her, it's "the people"!

I'm an only child & never wanted brothers or sisters until now, but of course there's no guarantee that they'd be any help anyway - as in your case. That's so awful that yours have left you to sort everything out for you mum. Good luck.

I'd better go round to see my mum now & see what today has to throw at us 😭. ............Deep breath!
 

MaNaAk

Registered User
Jun 19, 2016
2,251
Essex
Hello and welcome @ruby60 s.

Unfortunately what you are feeling is par for the course in a carers life. This means that you are among people who understand and you will get support here.

If this is a recent deterioration an infection like a UTI may be the cause so it's worth consulting the GP.

Apart from that anxiety and depression are common in dementia so that may be an issue. My wife if prone to hallucinations and she is treated separately for both those disorders as well as her dementia. Again, the GP may be of help.

Now that you have found us please keep posting for support.
It might be worth asking the doctor to review her medication in case she is suffering any side effects. That said dad (with Alzheimers) used to think there were people in the house before I worked out that he had gone back in time.

These symptoms are very frightening and it takes a lot of strength to deal with them.

Hugs

MaNaAk
 

MrsChristmas

Registered User
Jun 1, 2015
173
Hi @ruby60 s

You have just described exactly what it is like to be a carer for someone with dementia. I think we all feel like that. Dementia was once described as being the "long goodbye" and this accurately describes the way you are losing them, bit by bit.

What you are experiencing is called Anticipatory Grief. You are grieving for your loved one who is gone, and yet still here.
((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
Yes, exactly Canary.
 

MrsChristmas

Registered User
Jun 1, 2015
173
You poor thing - sounds like you're having an awful time. It's a terrible thing to see your mum slowly 'disappear' & a helpless, confused child emerge. My mum does the same, waking up saying she doesn't know who she is, where she is, scared & confused. These awful episodes of distress are made worse by her hallucinations, wobbliness & increasing problems with urgency to go to the loo & difficulty using the loo. It's very bad when she wakes up in the morning.

My heart sinks every day when I go round to see her after work & I'm full of hope that she might be more 'with it' today & then I find her still in pyjamas, looking all dishevelled & a note from the carer saying she didn't want to get dressed. I tidy up all the mess she's made during the day & put away all the clothes she's hoiked out of the wardrobes ........... but of course it's not her, it's "the people"!

I'm an only child & never wanted brothers or sisters until now, but of course there's no guarantee that they'd be any help anyway - as in your case. That's so awful that yours have left you to sort everything out for you mum. Good luck.

I'd better go round to see my mum now & see what today has to throw at us 😭. ............Deep breath!
Hi there

I live next door to my mum and it is very easy to pop around to check up on her. I get anxious before I go because I’m not sure what to expect and I’d paint on a happy face but inside I’d be so sad to see Mum frail - a shadow of what she was.

Being nearby is a blessing and a risk because it can take over your life, I’ve found to my cost.

This dreadful disease is a long, slow descent over many years.

Try to see it more as a marathon not a sprint.

I hope you don’t mind me saying this it’s just I did what you did and it does takes its toll and they don’t remember how often you visit!
 

woodpony

Registered User
Nov 22, 2017
12
Wiltshire
Hallucinations are part and parcel of dementia. I look after a friend with Vascular Dementia oddly not caused by a stroke or TIA. We don't watch TV anymore as she thinks the people are talking about her, she could hear and see other people around the home and she talks to her reflection in the display cabinet thinking it is the nice lady next door but the man there (me) is a miserable old s-d. It's not only people she see's or hear's but objects are also an issue. Her consultant is very good and she started on Donepezil and since the hallucinations started Memantine. Now she is having seizures and yet another pill, but further down the line with hallucinations maybe given antipsychotic drugs. Each day is different and some times the hallucinations get a bit tiring and I find myself snapping at her even though I know she can't help herself. Lock down during the Covid-19 pandemic seems to have increased the hallucinations, has anyone else experienced this?
 

Fiona F

Registered User
Apr 12, 2020
34
56
Southampton
Hallucinations are part and parcel of dementia. I look after a friend with Vascular Dementia oddly not caused by a stroke or TIA. We don't watch TV anymore as she thinks the people are talking about her, she could hear and see other people around the home and she talks to her reflection in the display cabinet thinking it is the nice lady next door but the man there (me) is a miserable old s-d. It's not only people she see's or hear's but objects are also an issue. Her consultant is very good and she started on Donepezil and since the hallucinations started Memantine. Now she is having seizures and yet another pill, but further down the line with hallucinations maybe given antipsychotic drugs. Each day is different and some times the hallucinations get a bit tiring and I find myself snapping at her even though I know she can't help herself. Lock down during the Covid-19 pandemic seems to have increased the hallucinations, has anyone else experienced this?
Yes, definitely - my mum's hallucinations have got worse. And yes it gets very tiresome & frustrating! I also snap & argue, then feel horribly guilty! She's been seeing people in her home for a few years now, starting with a lady in bed next to her, about 4 years ago - but over the past few months, especially during lockdown, she's gradually seen more & more people in the house , & bugs on the carpet. She's been having terrible episodes of distress & disorientation & confusion which have more recently shifted from middle of the night to when she wakes up in the morning. She's been put on Memantine tablets to see if it helps, but so far although she's having better nights sleep she is more wobbly & doddery than usual.
Same as you - I've pretty much had to stop my mum watching TV because she thinks they're talking to her or about her, & making fun of her. It's all very difficult, frustrating & upsetting - with a great big dollop of guilt!
 

Hazara8

Registered User
Apr 6, 2015
484
Yes, definitely - my mum's hallucinations have got worse. And yes it gets very tiresome & frustrating! I also snap & argue, then feel horribly guilty! She's been seeing people in her home for a few years now, starting with a lady in bed next to her, about 4 years ago - but over the past few months, especially during lockdown, she's gradually seen more & more people in the house , & bugs on the carpet. She's been having terrible episodes of distress & disorientation & confusion which have more recently shifted from middle of the night to when she wakes up in the morning. She's been put on Memantine tablets to see if it helps, but so far although she's having better nights sleep she is more wobbly & doddery than usual.
Same as you - I've pretty much had to stop my mum watching TV because she thinks they're talking to her or about her, & making fun of her. It's all very difficult, frustrating & upsetting - with a great big dollop of guilt!
The hallucinations which can arise with Alzheimer's are yet another aspect of the disease which are not always addressed in a accordance with their profound effect on the one living with this particular dementia. I did not need to apply any medication I.e. NMDA antagonist like Memantine - fortunately. Nevertheless, l do understand your sentiments. My late mother greatly enjoyed TV dramas and nature documentaries. Then, as the " mixed" dementia progressed ( this before diagnosis) it became apparent that television per se was becoming an issue. I would hear my mother responding to the action on the screen. Then she would become uneasy and challenge what was taking place on screen. Even the wonderful BLUE PLANET became a threat. And finally, an antiques auction programme resulted in a frantic reaction whereby my mother became very upset because "they want me to buy their things!! What do l do,??!! " And the answer from thereon was to switch off immediately. From that moment on television gathered dust and the radio became the only form of auditory recreation, mostly gentle music.

Hallucinations can be much more than passing inconveniences of course and in other specific neurological disorders or diseases, deeply traumatic.

I have a notion that Memantine can induce dizzy spells and l only mention that based upon long term association with dementia in a Care Home and NOT from a clinical know how basis. Side effects. And l am sure we have all been " guilty" of the occasional ' snap' and sharp response borne out of sheer frustration or indeed fatigue.

When the dementia journey ends and clarity ensues, you see much more clearly that the loved one has been the innocent party throughout that journey and when one investigates both the neurological and the more elusive factors which are the stuff of dementia in a loved one, you become humble in that awareness, because despite all of that, one cannot begin to know the reality of the waking hours which were lived out by that loved one, much of which will have been not just anxiety or confusion, but fear. And fear in isolation cannot be imagined. And imagination is not real.
 

Fiona F

Registered User
Apr 12, 2020
34
56
Southampton
The hallucinations which can arise with Alzheimer's are yet another aspect of the disease which are not always addressed in a accordance with their profound effect on the one living with this particular dementia. I did not need to apply any medication I.e. NMDA antagonist like Memantine - fortunately. Nevertheless, l do understand your sentiments. My late mother greatly enjoyed TV dramas and nature documentaries. Then, as the " mixed" dementia progressed ( this before diagnosis) it became apparent that television per se was becoming an issue. I would hear my mother responding to the action on the screen. Then she would become uneasy and challenge what was taking place on screen. Even the wonderful BLUE PLANET became a threat. And finally, an antiques auction programme resulted in a frantic reaction whereby my mother became very upset because "they want me to buy their things!! What do l do,??!! " And the answer from thereon was to switch off immediately. From that moment on television gathered dust and the radio became the only form of auditory recreation, mostly gentle music.

Hallucinations can be much more than passing inconveniences of course and in other specific neurological disorders or diseases, deeply traumatic.

I have a notion that Memantine can induce dizzy spells and l only mention that based upon long term association with dementia in a Care Home and NOT from a clinical know how basis. Side effects. And l am sure we have all been " guilty" of the occasional ' snap' and sharp response borne out of sheer frustration or indeed fatigue.

When the dementia journey ends and clarity ensues, you see much more clearly that the loved one has been the innocent party throughout that journey and when one investigates both the neurological and the more elusive factors which are the stuff of dementia in a loved one, you become humble in that awareness, because despite all of that, one cannot begin to know the reality of the waking hours which were lived out by that loved one, much of which will have been not just anxiety or confusion, but fear. And fear in isolation cannot be imagined. And imagination is not real.

Thank you so much for your reply & insight - yes you're right, I cannot imagine how terrible the fear, confusion & anxiety is that my mum goes through, alone, in the waking hours.

Mum's GP has reduced the dose of Memantine tablets from 10mg to 5mg over the past week to see if reduces her wobbliness. He said one of the side effects can be dizziness, as you said. She's been sleeping better since she started on Memantine a few weeks ago, but the down side is increased balance problems. I reckon we'll have to stop it, which is a shame.

Like your late mother, my mum was doing exactly the same with the TV - a few months ago started interacting with the people on TV, answering them, nodding & agreeing with what they were saying. At first it seemed harmless enough & I thought it was quite good because it was 'company' for her. However it soon became a problem & she was getting very agitated, fed up & angry with the people on TV. She was putting off going to the loo when she was desperate, or putting off going to bed at night, because they kept on talking to her, asking her questions, 'commenting' all the time on what she was doing or wearing etc. She said she had always been told by her parents that it was very bad manners to walk away from someone who was talking to her..........hence she would not turn the TV off or leave the room. She kept asking me what she should give these people to eat & drink, where do they go, where do they sleep etc. She rang me at 7.15 one morning asking what to give them for breakfast!

In the end I had to stop her having the TV on & just put her TV onto a local radio channel & that seems better. She has her bedside radio on 24/7, but luckily the tv gets radio channels as well.

The only time I put the TV on now is when I'm there & find something suitable for us to watch together - like a Fred Astaire & Ginger Rogers film, or an old wartime film - she can't actually follow it but likes the bits with music she remembers, or scenes of aircraft (my dad was in the RAF in the war). I got her some wartime music CDs which I put on for her (she can't use the cd player) & I can pop out for a couple of hours having left it on repeat. She loves that, but still gets a bit fed up if it's on repeat too long! ...... & the "crowds of people" looking in her lounge window complain if the music stops or volume is too low & they can't her it!

It's so helpful to hear from people like yourself who have been through the same. Thank you. F
 

Hazara8

Registered User
Apr 6, 2015
484
Thank you so much for your reply & insight - yes you're right, I cannot imagine how terrible the fear, confusion & anxiety is that my mum goes through, alone, in the waking hours.

Mum's GP has reduced the dose of Memantine tablets from 10mg to 5mg over the past week to see if reduces her wobbliness. He said one of the side effects can be dizziness, as you said. She's been sleeping better since she started on Memantine a few weeks ago, but the down side is increased balance problems. I reckon we'll have to stop it, which is a shame.

Like your late mother, my mum was doing exactly the same with the TV - a few months ago started interacting with the people on TV, answering them, nodding & agreeing with what they were saying. At first it seemed harmless enough & I thought it was quite good because it was 'company' for her. However it soon became a problem & she was getting very agitated, fed up & angry with the people on TV. She was putting off going to the loo when she was desperate, or putting off going to bed at night, because they kept on talking to her, asking her questions, 'commenting' all the time on what she was doing or wearing etc. She said she had always been told by her parents that it was very bad manners to walk away from someone who was talking to her..........hence she would not turn the TV off or leave the room. She kept asking me what she should give these people to eat & drink, where do they go, where do they sleep etc. She rang me at 7.15 one morning asking what to give them for breakfast!

In the end I had to stop her having the TV on & just put her TV onto a local radio channel & that seems better. She has her bedside radio on 24/7, but luckily the tv gets radio channels as well.

The only time I put the TV on now is when I'm there & find something suitable for us to watch together - like a Fred Astaire & Ginger Rogers film, or an old wartime film - she can't actually follow it but likes the bits with music she remembers, or scenes of aircraft (my dad was in the RAF in the war). I got her some wartime music CDs which I put on for her (she can't use the cd player) & I can pop out for a couple of hours having left it on repeat. She loves that, but still gets a bit fed up if it's on repeat too long! ...... & the "crowds of people" looking in her lounge window complain if the music stops or volume is too low & they can't her it!

It's so helpful to hear from people like yourself who have been through the same. Thank you. F
Thank you Fiona F for your very interesting reply to my own. So much of what you describe mirrors my own experience with my late mother. I too used a "loop" in respect of music on a cd when l needed to be out of the room, but the repetition seemed to irritate after a time. I think the disease affects all manner of things in cognition and in degrees and in a complex unpredictable way, coupled to which is the important aspect of an individual's history and what resides deep down in the long term memory cells. After a time even familiar sounds, music, etc., can become redundant in respect of consoling or calming, but again it depends on the individual as always. In the Care Home l had the luxury of time to spend with residents, unlike the Care Staff who for the most part were run off their feet and doing their utmost to maintain the fundamentally important ongoing care and subject to the daily reality of unpredictability in residents living with various dementias often combined with long term illness removed from that dementia. For example, l could listen to a truly lovely lady with severe Alzheimer's asking me a question not once, twice or ten times - but twenty five times in one session, then return from a brief stroll down the corridor to ask me the same question another dozen times. I listened and responded and a good half hour to 40 minutes proved to be very positive. The one to one at home, can also require that commitment but it's very hard because you are alone and the challenge becomes unsustainable, eventually.

But l think if we can act day to day and strive to adjust to what is not going to disappear nor improve, and meet the challenges this disease throws up at any given moment, with an almost philosophical approach, then we focus as best we can on the dementia, the disease with all its presentations as the intruder wearing the clothes of our loved one and speaking through their mouth, in a language unfamiliar, unsettling and often unkind. That is frankly a mammoth ask for anyone, especially when their own life needs to function healthily alongside the one afflicted with the dementia.

And yes, you are most certainly not alone, albeit it can feel very much so when things become frantic or simply exhausting to manage. We are all facing that unknown world inherent in the one we have known perhaps all our lives. We can all debate the experience of life - disappointment, having broken a leg, loss of vocation, the tedium and pressure of "lockdown " and our varied opinions on this that and the other.

But dementia presents us with a living dilemma, our loved one. All the reasoning and cognition we take for granted evades us when we communicate with them and we are not sure about that vacant look, the shaking of the head, the tetchiness seemingly unprovoked or the open hostility which shocks and disturbs and so on. Thus, the hallucinations and the " fantasizing " add to what is an enormous demand on one's perceptions each and every waking hour or indeed at night.

On here, there is a release valve. A really helpful source of debate and enquiry, but perhaps most important of all, open truths and lived " dementia care" lives, with all that entails. Sometimes mild and amusing and humour being very important in any life when it stems from the mutuality of total accord and authenticity - but also pain, trauma and real heart rending tragedy. In a way the whole extraordinary spectrum of the human condition can be brought forth in a relationship with dementia being lived in a loved one. That alone is eminently valuable and if you are very lucky, life enhancing.

With warmest wishes.
 

Fiona F

Registered User
Apr 12, 2020
34
56
Southampton
Thank you Fiona F for your very interesting reply to my own. So much of what you describe mirrors my own experience with my late mother. I too used a "loop" in respect of music on a cd when l needed to be out of the room, but the repetition seemed to irritate after a time. I think the disease affects all manner of things in cognition and in degrees and in a complex unpredictable way, coupled to which is the important aspect of an individual's history and what resides deep down in the long term memory cells. After a time even familiar sounds, music, etc., can become redundant in respect of consoling or calming, but again it depends on the individual as always. In the Care Home l had the luxury of time to spend with residents, unlike the Care Staff who for the most part were run off their feet and doing their utmost to maintain the fundamentally important ongoing care and subject to the daily reality of unpredictability in residents living with various dementias often combined with long term illness removed from that dementia. For example, l could listen to a truly lovely lady with severe Alzheimer's asking me a question not once, twice or ten times - but twenty five times in one session, then return from a brief stroll down the corridor to ask me the same question another dozen times. I listened and responded and a good half hour to 40 minutes proved to be very positive. The one to one at home, can also require that commitment but it's very hard because you are alone and the challenge becomes unsustainable, eventually.

But l think if we can act day to day and strive to adjust to what is not going to disappear nor improve, and meet the challenges this disease throws up at any given moment, with an almost philosophical approach, then we focus as best we can on the dementia, the disease with all its presentations as the intruder wearing the clothes of our loved one and speaking through their mouth, in a language unfamiliar, unsettling and often unkind. That is frankly a mammoth ask for anyone, especially when their own life needs to function healthily alongside the one afflicted with the dementia.

And yes, you are most certainly not alone, albeit it can feel very much so when things become frantic or simply exhausting to manage. We are all facing that unknown world inherent in the one we have known perhaps all our lives. We can all debate the experience of life - disappointment, having broken a leg, loss of vocation, the tedium and pressure of "lockdown " and our varied opinions on this that and the other.

But dementia presents us with a living dilemma, our loved one. All the reasoning and cognition we take for granted evades us when we communicate with them and we are not sure about that vacant look, the shaking of the head, the tetchiness seemingly unprovoked or the open hostility which shocks and disturbs and so on. Thus, the hallucinations and the " fantasizing " add to what is an enormous demand on one's perceptions each and every waking hour or indeed at night.

On here, there is a release valve. A really helpful source of debate and enquiry, but perhaps most important of all, open truths and lived " dementia care" lives, with all that entails. Sometimes mild and amusing and humour being very important in any life when it stems from the mutuality of total accord and authenticity - but also pain, trauma and real heart rending tragedy. In a way the whole extraordinary spectrum of the human condition can be brought forth in a relationship with dementia being lived in a loved one. That alone is eminently valuable and if you are very lucky, life enhancing.

With warmest wishes.

Thank you so much for your message. Gosh! you should write a book! You have an amazing way of looking at things & putting it into words! Very insightful & helpful. Thank you. F
 

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