Suffering with dementia, the other side of 'living well'

[philamillan]

Living well with dementia and making the world dementia friendly is for midly cognitive impairment and early dementia. I agree that dementia has become very sanitised.

We don't want to face the truth of advanced dementia as it tends to be a specific problem for only a 'few' people.

Until we refuse to accept dementia as an inevitable result of old age can the research be done to stop or reverse the disease.

Keep on telling the truth even when your hearers close their ears.

 

[Steve115]

HI Finnster, you must not stop all of the good that you are providing to our 'community', I am sure that it is gratefully received. We also need you on our side to to help get the message out there that not everyone with Dementia is living well and that the impact is in fact huge but at the moment unrecognized.

Looking back, my wife suddenly stopped living about 3 years ago, stopped all hobbies and interests, became withdrawn, would not leave the house and became quite paranoid. It was 18 months before the diagnosis of VaD and that was reached by accident after she was admitted to A&E due to Delerium. Even a few of our remaining friends would not believe the diagnosis as it did not match their view of the kind lady with memory problems. They have only slowly accepted that this is the way it is for my wife and that she will not get better.

My life stopped then as well as it quickly became clear that she needed 24 hour care as she could no longer look after herself at all. All of those skills simply disappeared and she went downhill fast. She is afraid of being alone and will not countenance a sitter. I therefore do not get out much and then only to the local shop for fresh supplies. She does not like me going into the garden as she cannot see where I am. The impact of this illness is huge on both of us.

My question to all of you who have contributed to this stream is
What do we have to do to change this? We know that we currently do not have the 'ear' of any person or organisation. It appears that the main focus of large Organisations providing support is to find a cure which is clearly what we all desperately want. Their current policy is to promote Living Well which is an excellent start to raising the visibility of Dementia but at the same time appears to ignore completely a large percentage of PwD and their Carers. Any thoughts on who we need to lobby to get something started.

 

[Murper1]

By posting the link, I hadn't thought to undermine the 'Living Well With Dementia' approach, but was so relieved to read that someone else was questioning that somehow it is that easy! I think it's fantastic that we are moving on from the old way of treating dementia sufferers, and Alzheimer's Society is at the forefront of highlighting and encouraging us all to understand, be positive and live as well as possible with or alongside dementia.
But is my family 'living well with dementia'? I think the horrendous reality of dementia in early, middle, late stages and the strain placed on friends and family should also be recognised for what it is so that we who are trying to make the best of living with the chaotic, messy and unpredictable realities of dementia are not made to feel even more worthless than before.
As so many others have said, this forum is by far the best source of support for me. There are no Admiral nurses nearby, no daycare places and no more visits from the memory clinic for my Mum. We manage! And I know there are a great many people who are worse off, or who are struggling to come to terms with a recent diagnosis etc. In truth, our family is 'Living Adequately With Dementia At The Moment', with some highs (when Mum says a word or responds to a hug), and some 'horrendicity' (um...just made that up ).
The wonderful work done by so many people, and the kindness I have encountered is not diminished by questioning that we can all live well with dementia, but shows it to be even more valuable! Please don't feel despondent as you are a ray of much needed support and sunshine!
But that's why I thought the link was interesting and I'm so glad we can talk about it.

 

[lemonjuice]

By posting the link, I hadn't thought to undermine the 'Living Well With Dementia' approach, but was so relieved to read that someone else was questioning that somehow it is that easy! I think it's fantastic that we are moving on from the old way of treating dementia sufferers, and Alzheimer's Society is at the forefront of highlighting and encouraging us all to understand, be positive and live as well as possible with or alongside dementia.
But is my family 'living well with dementia'? I think the horrendous reality of dementia in early, middle, late stages and the strain placed on friends and family should also be recognised for what it is so that we who are trying to make the best of living with the chaotic, messy and unpredictable realities of dementia are not made to feel even more worthless than before.

This struck a chord with me Yes it is possible for the PWD to 'live well' in the early stages of dementia, due to the many initiatives now at the forefront.

However what struck me was that the initiatives are, mostly, aimed at the PWD, whereas those of us affected by it because we have a relative with it, as opposed to suffering ourselves, are the ones often 'not living well'.

Out of the many diseases it is particularly one which has huge impacts on their nearest family and the 'carers' can so easily feel they are lost and forgotten.

 

[Spamar]

I was lucky, OH was diagnosed in 2007 and people were around, step forward G! Who helped massively. Came to see us, sorted the forms, put us in touch with events in the area and generally pleased everybody. Fast forward to now. LAs have little money, so services cut to the bone. In our area there has just been another tender round for services required. All the usual ones lost out to the one who proposes to do everything with volunteers. Now I've nothing against volunteers, I've been one myself, but everything?! Of course their costs are lower - well they won't be after the LA has to rescue them. And what happens to the carers and PWD? They are the ones that lose out.
A friend and I were prepared to help and signpost people along the way. The GP surgery said they will inform new carers. Did they? I leave you to guess.

Quite honestly, services to PWD and carers have gone steadily downhill. How does this help ' live well with dementia'. It's not that difficult in the early stages ( imho, sorry if you're struggling) but later? There's nothing 'well' about that. And as Kevin said, we're left to get on with it. Plus get abominable treatment when PWD has to go into hospital!
Better go now before I really get het up!

 

[Ann Mac]

I just don't understand why, given that so many are affected by this illness, that the reality of living with dementia is so often sugar-coated and misleading.

I get so, so angry at images in the media that portray a sweet looking and beautifully dressed elderly person serenely gazing up with affection and trust at a carer, who looks calm and well rested. Reality is just as likely (if not more likely, judging by the posts you read on TP) to be the pwd being paranoid, filled with fear or anger by the confusion, experiencing delusions and/or hallucinations, refusing to wash and change their clothes, screaming insults and cowering away from a carer who is totally exhausted and stressed. Not only exhausted and stressed from dealing with the behaviours listed, but also from the mountains of laundry, lack of sleep, the endless form-filling and paperwork, the constant repetition and need for reassurance and also from the sheer heartbreak of watching someone that they love, very much, slowly disappearing into this foul illness. Add in the almost inevitable battles with the so called support services to try and get just a little help, just a litle respite, just a little decent treatment, and its no wonder that the carer's health, mental and physical, is so often so badly compromised.

I don't believe, that once you get to the middle and end stages that it is ever possible to 'live well' with dementia - not for the sufferer nor for the carer. And until that is acknowledged and addressed openly and honestly by the media, by the medical practitioners and by any and every other support service that there is, the current situation where carers and patients alike are all too often left with either totally inadequate, or even no support at all, will continue.

Its OK to show the saddest images of what cancer can do to a person - but not dementia?. Why?

The first image isn't what dementia looks like for all too many of us - the second image is!

 

[Spamar]

Very well put, Ann.
I have problems with understanding why dementia is not regarded as a terminal disease and care given accordingly. I have had friends and relatives who have died with cancer who have had more care from the LA, carers and everybody in officialdom in one year than pwd get in their whole journey of many years. One was 'just given' a blue badge. Many people would love that to happen to pwd!

Is it just money? Or was there something odd when dementia was first classified?
Whilst some might live 'well' I feel it is only because something else has intervened. OH has chest infection on his death certificate, for instance.
Plus, until recently, doctors were not encouraged to put dementia on the death certificate, so the recently reported rise in cases may just be false reporting.

Another thing that struck me on re reading was the push to get care in the community. Where from? I think it was 2014 when DNS were visiting regularly, nothing to do with dementia, but it was a pain! Different nurses, who all did things differently, coming as and when. It was a real problem if we wanted to go out or had an appt elsewhere. Plus so much money wasted, none of the unused and unwrapped packets of dressings were returnable, though I did keep some for future use!
Three years on, I can't think things are any better!

 

[LadyA]

I think it's because dementia has carried with it the stigma of being a mental health problem - I had a discussion on that with William's consultant one time, on why it comes under the Dept. of Psychiatry, which for us, meant that William refused to see the consultant and so was without help for about eighteen months after his GP diagnosed him. Simply because, the first time he went, he saw "Consultant Psychiatrist" on the door. The consultant explained that although all dementia illnesses do indeed have physical causes, and are physical illnesses, they come under psychiatry because the majority of symptoms, particularly in the early/middle stages present as psychiatric rather than physical. He also explained that he is in fact a consultant in the "Psychiatry of Old Age" - which is not the same as a general psychiatrist. He only treats elderly people, those over 65.

It's very difficult to deal with the stigma - and I would suspect that trying to remove the stigma is partly what's behind the "Living Well" campaign - people tend to be frightened of anything different from themselves. Anyone who behaves, looks or acts in a way that goes against "normality". Anyone who behaves unpredictably. And there used to be a fear that any kind of "madness" was genetic, and would be passed down, hence the reluctance to put dementia or senility or anything like that on death certificates. I'm really glad that's changing - because, as you say, it was very likely to be skewing the official figures for the disease. My husband's death certificate has both aspiration pneumonia and alzheimer's disease given as cause of death. "Aspiration pneumonia, 2 months. Alzheimer's Disease, 7 years." Of course, he had it much longer than that - but that's when he was diagnosed.

As for "Care in the Community" - I suspect that that is a ruse to gradually cut services and leave family carers to pick up the pieces.

 

[Scouts girl]

I just don't get it. How can anyone 'live well' with dementia when they don't even know what is happening to them and try as you can to explain nothing makes the world any less foggier to them. My mum is deteriorating in front of my eyes. I spend nearly every day with her in her care home doing all the care I can for her to try and take some of the pressure off the carers and to let her know that I still love her so much and want to be with her as much as I can. How can she be living well when previously being such an independent person now has to need help to go to the toilet and clean herself. How can she be living well when I sit and hold her hand and she is begging me to take her home and says she wants to die as she can't bear not knowing what is happening. She is not one of these little old ladies that you see in photos smiling up endearingly at their loved ones she looks at me pleadingly with tears in her eyes. Am I living well with dementia.?? I am you you can guess from my thread the answer to that!!!

 

[stanleypj]

This may be thought a reasonable summary of what is meant by 'living well with dementia'. It's clearly not aimed at people who are very far along the road. It is quite a short document and I haven't spotted anything offensive. It has some helpful suggestions and advice for PWD and their carers. It has a rating of 4 out of 5 (108 reviews).

I should imagine its authors would be in agreement with most of the comments on the thread.

 

[Lawson58]

I have had a quick read of the NHS article and because it is targeted at PWD it has a very soft approach and they have bent over backwards to be nonconfronting. I think the thing that mystifies me though is that in my limited experience people with dementia mostly avoid reading anything to do with the subject. OH would rather run a mile than research anything to do with his problems. His mother had AD and as far as he is concerned it was pretty horrible so he simply does what most people do and deny that there is a problem. If he does well on his 6 monthly memory test then he believes he is getting better because that's what wants to think.

I suppose I have to wonder at the value of a soft sell. Those PWD who have insight into their condition surely would seek quality information rather read something that doesn't really address the problems and the issues that lie ahead. And do they sugarcoat information in the same way for those who suffer with other diseases eg cancer, heart failure etc?

 

[beejo]

Marketing dementia by governments

Agreed the (all?) marketing is superficial - as with any topic you have to scratch below the surface (at least) - the family can only help to the best of their ability - everyone has limits which a dementia sufferer will expose very quickly if the carer is tired from weeks of strenuous effort.

Perhaps a few marketing persons who have actually some experience of the condition would help - nonetheless they would probably never get funding from gov.

Marketing is the pretty face of our society - watch any ad. TV/net anywhere.

Beejo