• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

'Caring for my husband who has dementia with Lewy bodies': a personal account by Meg Wilkes

HarrietD

Administrator
Staff member
Apr 29, 2014
5,364
London
This chapter was written by Meg Wilkes, and is taken from the book Dementia with Lewy Bodies and Parkinson's Disease Dementia.

Meg writes about how her husband's symptoms developed, the guilt she experienced as a carer, and residential care among other things.

Here are a couple of quotes:

*

A frequent cry from carers is “no one can understand how it is unless they’ve been there”. It must be equally true for those we care for. None of us has the full picture. I am sure that understanding and knowledge will grow if professional and informal carers are more honest with each other, more courageous, trusting each other’s expertise.

When I arrive, he greets me briefly, often with a smile, though sometimes he doesn’t know me. He usually has something to tell me ... I long for some sign of affection, some reassurance that I am still special to him. Mostly, I have to be content that I am the one he takes for granted.

*

The book was edited by John O’Brien, David Ames, Ian McKeith, Edmond Chiu (Taylor & Francis 2005), and has been reproduced with the permission of the publisher.

We hope this piece will bring comfort to those of you caring for someone with dementia on TP who have been, or are going through, similar situations to Meg's.

Talking Point Team
 

Attachments

Hazara8

Registered User
Apr 6, 2015
416
This chapter was written by Meg Wilkes, and is taken from the book Dementia with Lewy Bodies and Parkinson's Disease Dementia edited by John O’Brien, David Ames, Ian McKeith, Edmond Chiu (Taylor & Francis 2005) and reproduced with the permission of the publisher.

Meg writes about how her husband's symptoms developed, the guilt she experienced as a carer, and residential care among other things.

Here are a couple of quotes:

*

A frequent cry from carers is “no one can understand how it is unless they’ve been there”. It must be equally true for those we care for. None of us has the full picture. I am sure that understanding and knowledge will grow if professional and informal carers are more honest with each other, more courageous, trusting each other’s expertise.

When I arrive, he greets me briefly, often with a smile, though sometimes he doesn’t know me. He usually has something to tell me ... I long for some sign of affection, some reassurance that I am still special to him. Mostly, I have to be content that I am the one he takes for granted.

*

We hope this piece will bring comfort to those of you caring for someone with dementia on TP who have been, or are going through, similar situations to Meg's.

Talking Point Team
Meg has so bravely presented her very personal journey, with immense and detailed content, which can only serve to inform those unfamiliar with dementia, as to the 'reality' of just what this disease truly means as an actual living condition, which erodes what is accepted as 'normality' in a given life, for both parties in the case of a married family life, or relationship or of carer and loved one. She has shed light on the elements which are rarely acknowledged simply owing to the fact that there are a multitude of factors which emerge from the source of this disease, so varied so unpredictable, so inaccessible, that they cannot really be expressed in words. We can explain in some detail, or let us say 'the specialists' can set out DLB (Dementia with Lewy Bodies) and the neuropathology or neuropsychiatric markers and suggest which part of the brain is being targeted, the visual hallucinations which are common - alike Parkinson's - and all manner of goings on in the cerebral cortex and so on and so forth, all of which matters and in itself is frankly fascinating. But the actual 'end product' which manifests itself inside the one you know and love and which then condemns what was once that 'normality' to what can so very often become a 'living hell', evades general
perception and thus understanding. It is easier to witness world events and all the horrors of war from a distance, which is almost a daily event nowadays via the electronic media satiating the globe. But 'being there' is totally different. There are no bombs nor bullets, but the 'pain' which is borne by both carer and the one being cared for is very real. This is not always appreciated I feel. When there are moments so fraught, so filled with complete and utter despair, when even tears being shed fail to curb that extraordinary and real pain which comes about, as if from the very heart itself, then at such moments you do not care about anything else at all - the despair, the pain even will dismiss the threat of impending bomb or bullet. This sounds dramatic, extreme, maybe somewhat deluded? I speak from a very personal standpoint. At the peak of what had become 'emergency respite', wavering between unbearable abject despair and thoughts which contemplated much, much darker regions, this was precisely how I felt and it was real.

Meg has so wonderfully encapsulated her own specific and heartfelt story, yet incorporated such clear and concise 'truths', as to provide a superb template of learning for carers and professionals, so that they can take on board what really matters in all of this. Awareness and thus application of that awareness in essence. That is certainly a challenge.

But as we all have just the one life and one only, if that life falls victim to any dementia of
whatever kind or nature, then to know that there are people who can understand the
implications, the manner in which that dementia can play havoc with a life and address it with
fundamental care and profound understanding, incorporated in unfailing love, then
perhaps we can rejoice just a little, for all our sakes.
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
I’m on my phone and can’t open the file

I feel it’s positive that people do write warts and all accounts of dementia. I do understand that it could be frightening for some one diagnosed, but I feel if there was better understanding of the disease by professionals, maybe, just maybe life wouldn’t be such a struggle it is now
 

Christine 47

Registered User
May 26, 2017
19
I find that as my husband's symptoms are such that if we're out in company for relatively short periods of time, he appears to be perfectly normal. The reality of his inability to walk or stand except for brief periods, his dreadful nights, his expended periods of exhaustion and disorientation, are not visible. Whilst his diagnosis was not good news, we were relieved that the Consultant Neurologist had real insight and knowledge about his bizarre and variable symptoms. Dementia with Lewy Bodies does not manifest itself with memory loss or verbal difficulties (at least earlier on,in my husband's case). The brain is damaged in other ways. The "invisibility" of his condition is stressful in itself, and yet he and I know all too well that our lives have been turned upside down.
 

Cazzita

Registered User
May 12, 2018
538
Absolutely heartbreaking, but necessary reading. God bless everyone who is going through this x
 

Life

Registered User
Oct 12, 2017
30
My OH has LBD and much of Meg's account resonates. My OH can be charming and presents well to anyone outside of the immediate family, even discussing current affairs. So much so, that our doctor diagnosed 'marital difficulties' after a delusional episode. The inability of a highly intelligent man to do the simplest of arithmetic, his unkempt appearance, rapid deterioration in driving ability and sleep problems were not considered as part of the whole picture. Looking back, he simply came up with plausible explanations.

It took 5 falls in one week and a traumatic incident in which he accused me of something terrible before we finally got a diagnosis. The 5th fall happened the morning after the traumatic incident and I insisted that the paramedics take him to hospital because I could no longer cope. At this point I was accused of Active Abandonment. Our family nearly feel apart.

And yet his care plan, which was based on a 10 minute chat he had with a social worker on a good day on hospital without me, is so woefully inadequate. Apparently he might need some reminders to carry out activities of daily living and that's about it. One thing was very clear: we (me, my OH, and our school age children) are pretty much on our own in this.

On diagnosis it was described to me as being a cross between Parkinson's and Alzheimers. To that I would add a third: schizophrenia. It seems to me that because that third strand makes people uncomfortable, it's simply ignored.
 
Last edited:

Christine 47

Registered User
May 26, 2017
19
Meg has so bravely presented her very personal journey, with immense and detailed content, which can only serve to inform those unfamiliar with dementia, as to the 'reality' of just what this disease truly means as an actual living condition, which erodes what is accepted as 'normality' in a given life, for both parties in the case of a married family life, or relationship or of carer and loved one. She has shed light on the elements which are rarely acknowledged simply owing to the fact that there are a multitude of factors which emerge from the source of this disease, so varied so unpredictable, so inaccessible, that they cannot really be expressed in words. We can explain in some detail, or let us say 'the specialists' can set out DLB (Dementia with Lewy Bodies) and the neuropathology or neuropsychiatric markers and suggest which part of the brain is being targeted, the visual hallucinations which are common - alike Parkinson's - and all manner of goings on in the cerebral cortex and so on and so forth, all of which matters and in itself is frankly fascinating. But the actual 'end product' which manifests itself inside the one you know and love and which then condemns what was once that 'normality' to what can so very often become a 'living hell', evades general
perception and thus understanding. It is easier to witness world events and all the horrors of war from a distance, which is almost a daily event nowadays via the electronic media satiating the globe. But 'being there' is totally different. There are no bombs nor bullets, but the 'pain' which is borne by both carer and the one being cared for is very real. This is not always appreciated I feel. When there are moments so fraught, so filled with complete and utter despair, when even tears being shed fail to curb that extraordinary and real pain which comes about, as if from the very heart itself, then at such moments you do not care about anything else at all - the despair, the pain even will dismiss the threat of impending bomb or bullet. This sounds dramatic, extreme, maybe somewhat deluded? I speak from a very personal standpoint. At the peak of what had become 'emergency respite', wavering between unbearable abject despair and thoughts which contemplated much, much darker regions, this was precisely how I felt and it was real.

Meg has so wonderfully encapsulated her own specific and heartfelt story, yet incorporated such clear and concise 'truths', as to provide a superb template of learning for carers and professionals, so that they can take on board what really matters in all of this. Awareness and thus application of that awareness in essence. That is certainly a challenge.

But as we all have just the one life and one only, if that life falls victim to any dementia of
whatever kind or nature, then to know that there are people who can understand the
implications, the manner in which that dementia can play havoc with a life and address it with
fundamental care and profound understanding, incorporated in unfailing love, then
perhaps we can rejoice just a little, for all our sakes.
I've been reading your post with very mixed emotions. It captures my experiences and is therefore comforting but the sheer awfulness of living alongside a dear husband slowly (or not so slowly) seeming to go mad with DLB is beyond my powers of description. Nights are much worse than days. Nights are quite literally terrifying. What if in a deluded state he stabs me in the night? I sleep (try to...) with the light on. My heart is pounding. Adrenalin is rushing through my body. I feel I can hardly breathe. Then I hear whimpering from the bedroom my husband is using. Then banging and crashing as his arms beat repeatedly in a spasm. Things fall to the floor... I move along the landing to see him. He's agitated and upset. I try to reassure him but he wants me to go. He's trying with great difficulty to control the spasms for my sake and my presence adds to his stress. I abjectly return to my bed. The cycle repeats itself again and again. I feel desperate and for the first time at night I want to phone a helpline to talk. Then I worry that if my OH is nodding off, I might disturb him. So instead I think of Talking Point, discover this thread and make this contribution. I do feel calmercer at least. I'm rubbish using this site, still not used to it. If you respond to me and don't receive an acknowledgement please don't worry, it will only mean that I haven't seen it but I will come back and look. Thank you for being there. Christine
 

Christine 47

Registered User
May 26, 2017
19
My OH has LBD and much of Meg's account resonates. My OH can be charming and presents well to anyone outside of the immediate family, even discussing current affairs. So much so, that our doctor diagnosed 'marital difficulties' after a delusional episode. The inability of a highly intelligent man to do the simplest of arithmetic, his unkempt appearance, rapid deterioration in driving ability and sleep problems were not considered as part of the whole picture. Looking back, he simply came up with plausible explanations.

It took 5 falls in one week and a traumatic incident in which he accused me of something terrible before we finally got a diagnosis. The 5th fall happened the morning after the traumatic incident and I insisted that the paramedics take him to hospital because I could no longer cope. At this point I was accused of Active Abandonment. Our family nearly feel apart.

And yet his care plan, which was based on a 10 minute chat he had with a social worker on a good day on hospital without me, is so woefully inadequate. Apparently he might need some reminders to carry out activities of daily living and that's about it. One thing was very clear: we (me, my OH, and our school age children) are pretty much on our own in this.

On diagnosis it was described to me as being a cross between Parkinson's and Alzheimers. To that I would add a third: schizophrenia. It seems to me that because that third strand makes people uncomfortable, it's simply ignored.
 

Christine 47

Registered User
May 26, 2017
19
My heart goes out to you. My husband has DLB too but has not yet shown the extreme behaviours you and your family are experiencing. However I absolutely recognise what you describe especially the sheer frustration of trying to convey to medical professionals the awful reality of the psychiatric elements of the disease when they clearly don't know what you mean. My husband can hardly walk or stand some days and is frequently exhausted during the day but could cope with those aspects of DLB. It's the terrifying nights that are driving us both to the brink. He's quite literally out of control with violent spasms and agitation, fearsand horrors and I'm so worried about what could happen if he attacked me or harmed himself in a delusional state. He already bites himself and claws at his head. What a nightmare this is. We've joined the Lewy Body Society who campaign to raise awareness amongst the medical profession and the general public and fund research into DLB. We also support the Alzheimers charity. This website site helps a lot. Take care, Christine
 

Hazara8

Registered User
Apr 6, 2015
416
I've been reading your post with very mixed emotions. It captures my experiences and is therefore comforting but the sheer awfulness of living alongside a dear husband slowly (or not so slowly) seeming to go mad with DLB is beyond my powers of description. Nights are much worse than days. Nights are quite literally terrifying. What if in a deluded state he stabs me in the night? I sleep (try to...) with the light on. My heart is pounding. Adrenalin is rushing through my body. I feel I can hardly breathe. Then I hear whimpering from the bedroom my husband is using. Then banging and crashing as his arms beat repeatedly in a spasm. Things fall to the floor... I move along the landing to see him. He's agitated and upset. I try to reassure him but he wants me to go. He's trying with great difficulty to control the spasms for my sake and my presence adds to his stress. I abjectly return to my bed. The cycle repeats itself again and again. I feel desperate and for the first time at night I want to phone a helpline to talk. Then I worry that if my OH is nodding off, I might disturb him. So instead I think of Talking Point, discover this thread and make this contribution. I do feel calmercer at least. I'm rubbish using this site, still not used to it. If you respond to me and don't receive an acknowledgement please don't worry, it will only mean that I haven't seen it but I will come back and look. Thank you for being there. Christine
Precisely, Christine. I am afraid that any words cannot match the reality, only mirror to an extent a personal journey, which is always a specific one, as with your own, unique to you and your husband. Being in that one-to-one situation is immensely challenging, as it is simply you and the one you care for - period. No other help and even then, you and you alone will know about your husband's persona better than anyone. Carers can do a great deal, but I found that at the end of the day, it was me and me alone who could address the deeper regions in the one being cared for, simply due to the fact that one knew them so very well and almost entirely, subject to the alienation of dementia. There is an irony in that of course. But if and when a time comes when that enormous responsibility is laid at the door of say a Care Home, any potential danger is at least no longer a constant threat. I never really believed that I would have to seek that avenue in my own case, but I did and 'emergency respite' became a reality whether I Iiked it or not. And you must not feel so vulnerable as to be afraid or terrified, you do not deserve that in any situation. But again, because we care so much about a person, we soldier on despite everything. And you are most certainly NOT 'rubbish using this site' . On the contrary, your contribution is of immense worth simply because it is REAL. This is where the values truly lay, the anecdotal, borne out of reality and truth - the day to day truth. This is where one can learn that one is not alone in all of this, albeit no panacea, simply 'listening' to what others are actually living through has fundamental worth.

With warmest wishes - to you both.
 

Christine 47

Registered User
May 26, 2017
19
Precisely, Christine. I am afraid that any words cannot match the reality, only mirror to an extent a personal journey, which is always a specific one, as with your own, unique to you and your husband. Being in that one-to-one situation is immensely challenging, as it is simply you and the one you care for - period. No other help and even then, you and you alone will know about your husband's persona better than anyone. Carers can do a great deal, but I found that at the end of the day, it was me and me alone who could address the deeper regions in the one being cared for, simply due to the fact that one knew them so very well and almost entirely, subject to the alienation of dementia. There is an irony in that of course. But if and when a time comes when that enormous responsibility is laid at the door of say a Care Home, any potential danger is at least no longer a constant threat. I never really believed that I would have to seek that avenue in my own case, but I did and 'emergency respite' became a reality whether I Iiked it or not. And you must not feel so vulnerable as to be afraid or terrified, you do not deserve that in any situation. But again, because we care so much about a person, we soldier on despite everything. And you are most certainly NOT 'rubbish using this site' . On the contrary, your contribution is of immense worth simply because it is REAL. This is where the values truly lay, the anecdotal, borne out of reality and truth - the day to day truth. This is where one can learn that one is not alone in all of this, albeit no panacea, simply 'listening' to what others are actually living through has fundamental worth.

With warmest wishes - to you both.
 

Christine 47

Registered User
May 26, 2017
19
Thank you for your very thoughtful and heartfelt response to my post. I shall read and reread it.
As I imagine you know too well, the mysterious mutability of the symptoms of Dementia with Lewy Bodies contribute to the stresses one faces. Until my husband and I eventually saw a Neurologist in Cambridge whom our GP thought might be able to help, my husband's condition had not been diagnosed locally. Indeed the Consultant had concluded that he did not have dementia, in part because his "memory tests", administered routinely each time we went to the clinic, showed no overall deterioration although the results were lower that might be expected. However the Clock Face and other abstract/spacial/strategic tasks defeated him.
Anyway, I began to think I must be imagining things. Part of me knew perfectly well that our lives had changed beyond recognition. We'd looked forward to an eventful retirement but instead our lives revolved around my husband's symptoms especially frequent exhaustion, very restricted mobility, spasms and fearful nights not to mention numerous subsidiary issues which I won't catalogue here.
And yet years came and went with no clue as to what was the matter. Friends and family would ask me what was wrong with him. "I wish I knew", was all I could manage. Strangers frequently appear from nowhere to help him/us when we're out and about because he seems so fragile, yet still his condition remained unidentified.
About eight years after I first started to become aware of changes, including impotrnce, and two years after an escalation of difficulties, the pronouncement came with confidence from a reliable source- Dementia with Lewy Bodies. The sense of relief and affirmation we both experienced on having our perceptions and experience validated was quickly overtaken, in my case, by deep apprehension as I learnt more about the condition and what might lie ahead.
As I indicated in my last post, the night time psychiatric symptoms are by far the worst part of it, for us. We can accommodate a different lifestyle dictated by exhaustion and poor movement, even frequent agitation, but the challenges of the fear and despair of night times are at a different level.
Well, I've rambled enough for now but I hope that like me, others will be helped if they recognise elements of my description in their experiences. Bye bye for now. Christine
 

Hazara8

Registered User
Apr 6, 2015
416
Thank you for your very thoughtful and heartfelt response to my post. I shall read and reread it.
As I imagine you know too well, the mysterious mutability of the symptoms of Dementia with Lewy Bodies contribute to the stresses one faces. Until my husband and I eventually saw a Neurologist in Cambridge whom our GP thought might be able to help, my husband's condition had not been diagnosed locally. Indeed the Consultant had concluded that he did not have dementia, in part because his "memory tests", administered routinely each time we went to the clinic, showed no overall deterioration although the results were lower that might be expected. However the Clock Face and other abstract/spacial/strategic tasks defeated him.
Anyway, I began to think I must be imagining things. Part of me knew perfectly well that our lives had changed beyond recognition. We'd looked forward to an eventful retirement but instead our lives revolved around my husband's symptoms especially frequent exhaustion, very restricted mobility, spasms and fearful nights not to mention numerous subsidiary issues which I won't catalogue here.
And yet years came and went with no clue as to what was the matter. Friends and family would ask me what was wrong with him. "I wish I knew", was all I could manage. Strangers frequently appear from nowhere to help him/us when we're out and about because he seems so fragile, yet still his condition remained unidentified.
About eight years after I first started to become aware of changes, including impotrnce, and two years after an escalation of difficulties, the pronouncement came with confidence from a reliable source- Dementia with Lewy Bodies. The sense of relief and affirmation we both experienced on having our perceptions and experience validated was quickly overtaken, in my case, by deep apprehension as I learnt more about the condition and what might lie ahead.
As I indicated in my last post, the night time psychiatric symptoms are by far the worst part of it, for us. We can accommodate a different lifestyle dictated by exhaustion and poor movement, even frequent agitation, but the challenges of the fear and despair of night times are at a different level.
Well, I've rambled enough for now but I hope that like me, others will be helped if they recognise elements of my description in their experiences. Bye bye for now. Christine
Thank you for that Christine. What a long nightmare for you both. Your post proves just how valuable 'awareness' from those who care or are directly involved(partners etc) in this whole area of dementia, truly is. Where clinicians might seem vague or perhaps not really in tune with the sheer depth of day-to-day trauma, simply due to the nature of their regime and possibly not an in depth association with dementia per se, we, as carers/partners see in detail both physical and psychological outcomes/presentations. That is really so very important in any context, especially if and when hospitalization comes into play.

DLB is not so common as AD, but I see it in the Care Home where I work as a volunteer. It often mimicks Parkinson's in respect of movement (as you have shown earlier in your post). They always suggest early diagnosis is imperative for DLB and this must be an irritant for you based upon your own story. I trust you will already have spoken with the applicable specialist, with regard to appropriate medication - a tricky area here. Beyond the pharmaceutical, I have seen positive reactions to music therapy in the Care Home. But as stated earlier, the one-to-one which you will know all about in depth, is very different. In the Care Home one has
both the environment geared to dementia, numerous Carers, the always revealing 'play off' between residents (when what seems to be nonsense, actually works in terms of communication, i.e. dementia world). Night time brings about its own challenges, even if talking about depression (my own direct experience a decade or so ago) as it magnifies and seems prone to a range of symptoms which are subtle and yet profound - they feel very real and yet where do they evolve from? The brain is still largely unknown and a damaged brain moreso. But, as I find almost daily in the Care Home, once you apply 'humanity' to even the most traumatic situation, whether by a hug or simply being there to comfort and calm, it is not hopeless. I mentioned once that as a child I experienced truly terrifying nightmares. My father would come to the bedside, hold my and, often for hours, until I fell asleep, calmed and comforted. Different from DLB and dementia of course, but something basic, primeval, not easily answered nor in need of too much introspection - our humanity. And in those early hours when you are on tenterhooks, probably exhausted and in and out of despair, that might seem rather simplistic, but without that unique human element I feel we are lost.

And again, your posts are so very valuable. You are living the situation with your husband and that truth set down with all the inherent emotion and angst, provides solace and genuine awareness for those who just might have been disregarded or let us say, not taken too seriously in early days, as with yourself.

With warmest of wishes.
 

Honour

Registered User
Nov 3, 2016
13
Thank you for that Christine. What a long nightmare for you both. Your post proves just how valuable 'awareness' from those who care or are directly involved(partners etc) in this whole area of dementia, truly is. Where clinicians might seem vague or perhaps not really in tune with the sheer depth of day-to-day trauma, simply due to the nature of their regime and possibly not an in depth association with dementia per se, we, as carers/partners see in detail both physical and psychological outcomes/presentations. That is really so very important in any context, especially if and when hospitalization comes into play.

DLB is not so common as AD, but I see it in the Care Home where I work as a volunteer. It often mimicks Parkinson's in respect of movement (as you have shown earlier in your post). They always suggest early diagnosis is imperative for DLB and this must be an irritant for you based upon your own story. I trust you will already have spoken with the applicable specialist, with regard to appropriate medication - a tricky area here. Beyond the pharmaceutical, I have seen positive reactions to music therapy in the Care Home. But as stated earlier, the one-to-one which you will know all about in depth, is very different. In the Care Home one has
both the environment geared to dementia, numerous Carers, the always revealing 'play off' between residents (when what seems to be nonsense, actually works in terms of communication, i.e. dementia world). Night time brings about its own challenges, even if talking about depression (my own direct experience a decade or so ago) as it magnifies and seems prone to a range of symptoms which are subtle and yet profound - they feel very real and yet where do they evolve from? The brain is still largely unknown and a damaged brain moreso. But, as I find almost daily in the Care Home, once you apply 'humanity' to even the most traumatic situation, whether by a hug or simply being there to comfort and calm, it is not hopeless. I mentioned once that as a child I experienced truly terrifying nightmares. My father would come to the bedside, hold my and, often for hours, until I fell asleep, calmed and comforted. Different from DLB and dementia of course, but something basic, primeval, not easily answered nor in need of too much introspection - our humanity. And in those early hours when you are on tenterhooks, probably exhausted and in and out of despair, that might seem rather simplistic, but without that unique human element I feel we are lost.

And again, your posts are so very valuable. You are living the situation with your husband and that truth set down with all the inherent emotion and angst, provides solace and genuine awareness for those who just might have been disregarded or let us say, not taken too seriously in early days, as with yourself.

With warmest of wishes.
 

Honour

Registered User
Nov 3, 2016
13
My husband has DLB and it is becoming more and more difficult with him being non compliant and therefore causing an argument at the slightest thing . I am a very practical person and can usually see away to improve a problem area but he will just not accept this . One thing which is really getting me down is his non acceptance that the overnight in continence pants are specially made to hold urine!! He keeps pulling out his penis , pinching it to keep the urine in! Which makes it then act as a hosepipe soaking everything. I try my very best to get it right but last night he asked me to be kinder to him, it’s very hard as I know he, and I , don’t want him to halve this disease but trying to get a sensible conversation can be somewhat difficult. My friends say I am wonderful with him!! Not always
I have made huge inroads into easing the night terrors, which always involves violence either to himself or, I don’t sleep in the same room, to me. Him murdering me!! Hence different rooms , he once had me by the throat!! I started giving him Ibuprofen just before going to bed, that was nine months ago and he is now only experiencing them about 1 a month or less .

It is the feeling of guilt wondering how much longer this can go on. As so many have found out, and stated......that families just “DON’T GET IT” They visit, if you’re lucky, for three hours in which time the patient puts up a good show and they don’t really see the full extent, They might witness the odd waver, but not on the daily basis one on top of the other following on time after time. No one should wish a life away but sometimes, he’s 87 and I’m 67 I just wonder how much longer it will be??
 

Hazara8

Registered User
Apr 6, 2015
416
My husband has DLB and it is becoming more and more difficult with him being non compliant and therefore causing an argument at the slightest thing . I am a very practical person and can usually see away to improve a problem area but he will just not accept this . One thing which is really getting me down is his non acceptance that the overnight in continence pants are specially made to hold urine!! He keeps pulling out his penis , pinching it to keep the urine in! Which makes it then act as a hosepipe soaking everything. I try my very best to get it right but last night he asked me to be kinder to him, it’s very hard as I know he, and I , don’t want him to halve this disease but trying to get a sensible conversation can be somewhat difficult. My friends say I am wonderful with him!! Not always
I have made huge inroads into easing the night terrors, which always involves violence either to himself or, I don’t sleep in the same room, to me. Him murdering me!! Hence different rooms , he once had me by the throat!! I started giving him Ibuprofen just before going to bed, that was nine months ago and he is now only experiencing them about 1 a month or less .

It is the feeling of guilt wondering how much longer this can go on. As so many have found out, and stated......that families just “DON’T GET IT” They visit, if you’re lucky, for three hours in which time the patient puts up a good show and they don’t really see the full extent, They might witness the odd waver, but not on the daily basis one on top of the other following on time after time. No one should wish a life away but sometimes, he’s 87 and I’m 67 I just wonder how much longer it will be??
There is absolutely no comparison between a family 'visit' and the 24 hour cycle of care you so clearly describe. In fact, the family are - through no fault of their own - oblivious to the reality. Even in the Care Home (which might one day prove to be a 'reality' for your own situation) where you have Staff and a regime of care, with all the variants in dementia taking place all the time, that 'personal bond' which exists between spouse/partner/adult/child/ makes the experience both profound and extremely challenging. The physical demands (incontinence) alone can be very, very hard to deal with, when that surge of frustrated anger comes about when everything you do seems to be contrary to what your loved one desires. Then, that is when proper help might be required. A
different 'hand', like a professional nurse or Carer who has first-hand experience with dementia and is aware of the traits of DLB. As to medication, then that is a very specific area with dementia and of course should be channelled through the GP or specialist. But all of this is so very difficult emotionally. No one wishes to see their loved one anywhere other than at home. But the cruel reality dictates that an inevitable move is sure to come about, when things become impossible. And in all of this, the nature of dementia itself is the central factor. It is what makes someone want to eat a place mat instead of their dinner, it is what insists that the bathroom is in fact the kitchen, or that the fresh incontinence pad you have just managed to secure, must be pulled off right away and flung aside. Dementia does not understand nor appreciate any of your angst, your tears, your exhaustion. And the loved one whom it inhabits, would not ever wish to see you in such a situation as this, nor would they wish to hurt you in any way -- unless that has been the case in the past. Then there is perhaps little love lost. So we are talking empathy and compassion as a constant and each and every day. There comes a time when that draws upon every vestige of your reserves and your energy and your sanity. And if one starts to contemplate nothing but despair, then that is clearly the time for change. 'Best interests', so frequently quoted as to seem rather pat, but in essence a truism, for both parties and the prospect of a more stable future.
 

BLIP

Registered User
Jul 22, 2018
66
Thank you so much Hazara8 for pointing out that there is no comparison between mother son relationship and carers relationship for PWD My husband is his mothers carer and ONLY relative apart from me of course. He has been trying his absolute best to care for her but her needs are changing and becoming more demanding as is the nature of dementia. M.I.L.will not accept carers and told SW as much. However SW then tried to force his way in to the house which distressed M.I.L. greatly. Because we wouldn't let them in they called police. Police said if SW not allowed access they would break the door down, can you imagine what we were going through. M.I.L. in tears and frightened. My husband had no choice but to let them in to save his mother going through the shock of her home being effectively broken into by what are to her complete strangers ! 1 police officer went in lounge with SW and M.I.L. the other made my husband stand in the hall with the P.C. standing over him as if he was a criminal when all he was trying to do was follow his mothers wishes. Next thing he knows an ambulance pulls up and his mother is taken to it. My husband tried to speak to his mother to explain why she was going to hospital " because SW said so " but was told by the P.C. he wasn't allowed to speak to his mother. Fast forward 10 days of a medically fit M.I.L. being in hospital. The 1 day we couldn't visit due to stomach bug she was whisked away to respite care without letting us know. Only found out when we went to visit ! Hospital wouldn't tell us where she had been taken, under SW's instruction. Sympathetic nurse gave us the name of the city and the first name of the home that M.I.L. Had been taken to. After a bit of detective work found the care home 40 miles away. Rang to ask if we could visit and were told no. Again as per instructions from S.W. We are very angry and upset that we are being treated like this . Complaint about SW is ongoing. What absolute hell ! Especially as husband is ill himself. He is an amputee soon to be a double amputee and is in constant pain , he can't take much more stress and neither can I. We have both been doing all we physically can for M.I.L. No thanks from SW just being treated like criminals and abusers. My husband is a clergyman for goodness sake, it's his job to care for everyone but especially his mother ! Sorry for rant but this forum is the only place I can rant.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,106
Nottinghamshire
@ Blip. I'm glad you've managed to find which home your MIL is in. I Hope you'll be allowed to see her soon. It's heartbreaking the way you're being treated.
 

Christine 47

Registered User
May 26, 2017
19
Thank you for that Christine. What a long nightmare for you both. Your post proves just how valuable 'awareness' from those who care or are directly involved(partners etc) in this whole area of dementia, truly is. Where clinicians might seem vague or perhaps not really in tune with the sheer depth of day-to-day trauma, simply due to the nature of their regime and possibly not an in depth association with dementia per se, we, as carers/partners see in detail both physical and psychological outcomes/presentations. That is really so very important in any context, especially if and when hospitalization comes into play.

DLB is not so common as AD, but I see it in the Care Home where I work as a volunteer. It often mimicks Parkinson's in respect of movement (as you have shown earlier in your post). They always suggest early diagnosis is imperative for DLB and this must be an irritant for you based upon your own story. I trust you will already have spoken with the applicable specialist, with regard to appropriate medication - a tricky area here. Beyond the pharmaceutical, I have seen positive reactions to music therapy in the Care Home. But as stated earlier, the one-to-one which you will know all about in depth, is very different. In the Care Home one has
both the environment geared to dementia, numerous Carers, the always revealing 'play off' between residents (when what seems to be nonsense, actually works in terms of communication, i.e. dementia world). Night time brings about its own challenges, even if talking about depression (my own direct experience a decade or so ago) as it magnifies and seems prone to a range of symptoms which are subtle and yet profound - they feel very real and yet where do they evolve from? The brain is still largely unknown and a damaged brain moreso. But, as I find almost daily in the Care Home, once you apply 'humanity' to even the most traumatic situation, whether by a hug or simply being there to comfort and calm, it is not hopeless. I mentioned once that as a child I experienced truly terrifying nightmares. My father would come to the bedside, hold my and, often for hours, until I fell asleep, calmed and comforted. Different from DLB and dementia of course, but something basic, primeval, not easily answered nor in need of too much introspection - our humanity. And in those early hours when you are on tenterhooks, probably exhausted and in and out of despair, that might seem rather simplistic, but without that unique human element I feel we are lost.

And again, your posts are so very valuable. You are living the situation with your husband and that truth set down with all the inherent emotion and angst, provides solace and genuine awareness for those who just might have been disregarded or let us say, not taken too seriously in early days, as with yourself.

With warmest of wishes.
Dear Hazara 8
What a kind and supportive message. I have only just seen it not least because I don't always get on very well with the technology on the website!
It's very good to know others have real insight into LBD. I'm feeling rather overwhelmed lately. Since my husband was diagnosed (rather late) in April he's deteriorated a lot. There's less and less that he can do and his nights are very poor. We're receiving good care and support from the local Consultant who is seeing him monthly and has found that he can tolerate Trazodone at night which takes the edge off his night time terror which is a huge relief. But in general terms movement and cognition are going downhill fast . From example, a few weeks ago an OT visited and recommended all sorts of aids to help him also stair and other wall rails. At the time I was wiling to be guided by her but didn't really see the need for it all. The stair rail fitting has been delayed until next week and it's currently a case of hoping they are in place before he falls down the stairs. It's hard to believe so much can change so quickly. So whilst I generally plan ahead and am pretty organised I feel everything is happening so fast. My husband and I are starting to think about planning respite care because I could forsee he and/or I would be helped by it especially if things dipped suddenly. We're fortunate to be receiving help from agencies (AGE UK, Carers Organisation etc) and medical help but it's hard not to feel on one's own with it when family and friends cannot understand the reality of the psychiatric elements and I wouldn't want to alarm them. One lives at a distance near his wife's family and our daughter has her hands full with a young family therefore if anything I'm trying to protect themy.
Well this has been a bit of an aimless rambled but it's been good to communicate with you . Very best wishes, Christine