Becoming Invisible

[CoastalPair]

Can we please petition someone to change the term Dementia to “The Invisible”

From the time we received the official diagnosis of mixed dementia, and I always say we in respect of the condition, simply because once one partner is diagnosed, the affect on the other is also very substantial and very real.

I would never allow my wife to face this nightmare alone, or force her into the care of a stranger. From the very start my wife made me promise that there would be no carers, no putting her away in to a care facility and that she would always remain in our home.

Having had a great deal of experience with our Daughter and her aggressive MS, the one thing we did learn was that the moment you involve others, regardless of how well intended, it becomes increasingly difficult to maintain the dignity and wishes of the individual concerned.

This is simply because the individual in need becomes a unit of profit and loss, with the sole aim of providing the least possible effort and care for the most amount of money, the individual carers are usually very caring, but the companies they work for are only interested in the bottom line.

I know many will see this attitude as rather cynical, but I have seen it for a reality too many times.

So no carers for us and, sadly, no family who would be able, or indeed willing to help and the friends we use to have, are now, rather pointedly, busy elsewhere.

We are now officially invisible, our GP provides no advice, help or support, the Memory clinic operates a policy of Diagnose, discharge and ignore. If my wife had a serious heart condition she would be monitored on a regular basis with follow appointments. For the cancer my wife was diagnosed with, she receives regular appointments and follow up consultation.

But for the Dementia sufferer who now has this life long, progressive deterioration of their abilities, with no known cure and little in the way of successful treatments there is nothing, zilch, nowt, zero.

This lack of care and total disregard also extends to their familial carers, for example, as my wife’s only carer there is no help or assistance, I cannot even apply for a carers allowance from the government because of a private pension which allows me to remain at home. I already have to use my pension, and our savings to care for my wife, 24 hours a day, 7 days a week, 52 weeks of the year, none of which is recognised or acknowledged, or even considered worthy enough to get carers allowance.

By the same token, if things do get so bad that a dedicated care home is the only option then our local council will rush with glee at break neck speed to alleviate me of up to a total of £84k for care: so, my dedicated care is officially worthless, and yet the council is happy to rob me of my ever diminishing savings and home because the care (allegedly) they provide is worth oh so much more than mine.

At the moment my wife receives the higher level of Attendance Allowance, i.e., £89.60 per week, and getting this involved having to go through the mandatory appeals process with the DWP but this level of allowance would not even pay for 4 hours of home care per week.

The definition of disability under the Equality Act 2010: “You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” According to the act, ‘substantial’ and ‘long-term’ mean ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed.

The simple fact is, that dementia is counted as a disability by the Equality Act 2010 and by United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), as it causes “long-term physical, mental, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.”

There is a very real argument that could be made that individuals suffering with dementia are deliberately discriminated against, simply because there is no ongoing care, no support from either the memory clinic, or the GP, unlike everyone else with all other life limiting conditions

As I previously mentioned, we are now officially invisible, and I guess that’s my moan out of the way, but does it help, no of course not.

Happy days....

 

[kindred]

Can we please petition someone to change the term Dementia to “The Invisible”

From the time we received the official diagnosis of mixed dementia, and I always say we in respect of the condition, simply because once one partner is diagnosed, the affect on the other is also very substantial and very real.

I would never allow my wife to face this nightmare alone, or force her into the care of a stranger. From the very start my wife made me promise that there would be no carers, no putting her away in to a care facility and that she would always remain in our home.

Having had a great deal of experience with our Daughter and her aggressive MS, the one thing we did learn was that the moment you involve others, regardless of how well intended, it becomes increasingly difficult to maintain the dignity and wishes of the individual concerned.

This is simply because the individual in need becomes a unit of profit and loss, with the sole aim of providing the least possible effort and care for the most amount of money, the individual carers are usually very caring, but the companies they work for are only interested in the bottom line.

I know many will see this attitude as rather cynical, but I have seen it for a reality too many times.

So no carers for us and, sadly, no family who would be able, or indeed willing to help and the friends we use to have, are now, rather pointedly, busy elsewhere.

We are now officially invisible, our GP provides no advice, help or support, the Memory clinic operates a policy of Diagnose, discharge and ignore. If my wife had a serious heart condition she would be monitored on a regular basis with follow appointments. For the cancer my wife was diagnosed with, she receives regular appointments and follow up consultation.

But for the Dementia sufferer who now has this life long, progressive deterioration of their abilities, with no known cure and little in the way of successful treatments there is nothing, zilch, nowt, zero.

This lack of care and total disregard also extends to their familial carers, for example, as my wife’s only carer there is no help or assistance, I cannot even apply for a carers allowance from the government because of a private pension which allows me to remain at home. I already have to use my pension, and our savings to care for my wife, 24 hours a day, 7 days a week, 52 weeks of the year, none of which is recognised or acknowledged, or even considered worthy enough to get carers allowance.

By the same token, if things do get so bad that a dedicated care home is the only option then our local council will rush with glee at break neck speed to alleviate me of up to a total of £84k for care: so, my dedicated care is officially worthless, and yet the council is happy to rob me of my ever diminishing savings and home because the care (allegedly) they provide is worth oh so much more than mine.

At the moment my wife receives the higher level of Attendance Allowance, i.e., £89.60 per week, and getting this involved having to go through the mandatory appeals process with the DWP but this level of allowance would not even pay for 4 hours of home care per week.

The definition of disability under the Equality Act 2010: “You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” According to the act, ‘substantial’ and ‘long-term’ mean ‘substantial’ is more than minor or trivial, eg it takes much longer than it usually would to complete a daily task like getting dressed.

The simple fact is, that dementia is counted as a disability by the Equality Act 2010 and by United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), as it causes “long-term physical, mental, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.”

There is a very real argument that could be made that individuals suffering with dementia are deliberately discriminated against, simply because there is no ongoing care, no support from either the memory clinic, or the GP, unlike everyone else with all other life limiting conditions

As I previously mentioned, we are now officially invisible, and I guess that’s my moan out of the way, but does it help, no of course not.

Happy days....

I feel your pain, I’ve been there, it was hell. It was like we had ceased to exist.
All sympathy to you and your wife. I’m so glad you have found this forum. No one is invisible here.

 

[Grannie G]

You speak my truth @CoastalPair. Sadly few carers have the strength or time to do much about it.

 

[Suesue.G.]

This hit a huge nerve, with me, Coastalpair! My OH has Vascular Dementia with Alzheimers, and, possibly, Parkinsons. When we first got the, official, diagnosis, from the Memory Clinic, I was impressed by the OT visits and the Physio calls. These kinds of things now have to be referred by the GP. This involves waiting for a phone appointment, usually, at least 3 weeks, and then, having to explain the situation, each time, to a slightly bored sounding GP, that has never seen him. The Speech and Language Therapist has been the greatest help. She spotted the signs of Parkinsons . She is wonderful! It is so true that we are the "Invisible " people, to everyone else. My OH is deteriorating day by day. His speech has become more a series of grunts, with a few words scattered here and there. He has become more unsteady on his feet and seems, almost, scared to move. Do I make him do the exercises we were given, over a year ago? Should I make him walk up and down the road with me, regularly, even though he seems terrified? We are often told, as sole Carers, to take care of ourselves. What, exactly, does that mean? In our case, we have been together for 51 years, 48 years married. I am watching the person I have known, most of my life, disappear before my eyes. It is heartbreaking, at times, to see the, obvious, distress in his eyes, as I clean him up, again, after another "miss" in the loo. I do feel privileged to be able to take care of him, and, have promised to keep him, safe, at home, and, I will, but, just an occasional acknowledgement from a doctor, that he still exists, and, still matters, would ease our journey, so much

 

[Jaded'n'faded]

I agree. I wish I didn't but I do. I think dementia is still the elephant in the room - no, not the room - the world!

As better nutrition and advances in healthcare have increased the average lifespan, we seem to have completely overlooked the fact that many humans are completely mad by the time they die, as if that doesn't matter as long as they are still alive or live to a great age. (Sorry to use that word as I know it causes offence, but I'm trying to make a point here.)

Is it fear, is it shame that we refuse to talk about it? We constantly use euphemisms which gives some dignity and protects our sensibilities somewhat. But you only have to read the posts on TP to know what dementia is really like for many. We used to put such people in 'the madhouse' - most countries have old asylums crumbling away and I very much hope we have moved on from those times. But we still haven't addressed it properly, still don't know what to 'do' about it.

Friends disappear, family sometimes, even doctors don't want to know. It's politically incorrect to talk of madness and people going crazy these days - I get that. But it doesn't change the fact that my mother was mad as a hatter by the time she died and for several years before.

What use is it to still be living if you've lost your mind?

Sincere apologies if I've caused offence - I am very much aware that a lot of people feel differently about such things. But I don't think I will ever get over my mother's descent into madness.

 

[Bunpoots]

A rose by any other name @Jaded'n'faded .

I had a similar conversation with my GP this morning..

 

[Violet Jane]

Sadly, as treatments for many other diseases have been developed and improved there have been very few developments in the field of dementia. Dementia is hidden and ignored because sufferers and their carers become isolated as friends and many family members pull away. You don't have high profile fundraising campaigns promising to find new treatments and save lives as you do with the cancer and hear disease charities. Even Admiral Nurses are not well known whereas MacMillan Nurses have a high profile, with television advertisements and an annual coffee morning.

 

[CAL Y]

I agree. I wish I didn't but I do. I think dementia is still the elephant in the room - no, not the room - the world!

As better nutrition and advances in healthcare have increased the average lifespan, we seem to have completely overlooked the fact that many humans are completely mad by the time they die, as if that doesn't matter as long as they are still alive or live to a great age. (Sorry to use that word as I know it causes offence, but I'm trying to make a point here.)

Is it fear, is it shame that we refuse to talk about it? We constantly use euphemisms which gives some dignity and protects our sensibilities somewhat. But you only have to read the posts on TP to know what dementia is really like for many. We used to put such people in 'the madhouse' - most countries have old asylums crumbling away and I very much hope we have moved on from those times. But we still haven't addressed it properly, still don't know what to 'do' about it.

Friends disappear, family sometimes, even doctors don't want to know. It's politically incorrect to talk of madness and people going crazy these days - I get that. But it doesn't change the fact that my mother was mad as a hatter by the time she died and for several years before.

What use is it to still be living if you've lost your mind?

Sincere apologies if I've caused offence - I am very much aware that a lot of people feel differently about such things. But I don't think I will ever get over my mother's descent into madness.

@Jaded'n'faded . I, for one am not offended in the slightest by your words.
Why Oh Why do the medical professionals think that they have ”failed” if someone dies.
They don’t seem to understand that it is quality, not quantity of life which matters and I think that they have a duty to look after people whichever illness they have.
I know it’s been said before but would they tell a person that they have cancer and send them away to be looked after by family, with no extra help until they eventually die.
I was “fortunate “ only to have to care for my husband for two years but was disgusted by the lack of understanding by the doctors etc.

 

[Helly68]

@Jaded'n'faded - I think I can get where you are coming from. My father always described my mother (now dead, she had mixed dementia), as "completely mad". He used the same kind of terminology during her Bipolar Disorder cycles. It always bothered me, this labelling, but on the other hand, he would see it as being honest (I think it isn't as simple as that).
Sometimes by skirting the issue with language we try and "sanitise" what for many is a terrifying and inexplicable experience - for the person with dementia and their carer. He and I also found it very hard visiting someone who had diminished so far from themselves. I am not sure what I think about the issues of prolonging length of life over quality of life (which it seems we sometimes do) - it is so emotive. Like you, I have no wish to offend anyone, but I recognise that going through this as a family or individual, changes everyone.

 

[Jaded'n'faded]

Another point: when people are caring for someone at home with physical disabilities, they usually receive training, guidance and instruction. And if your loved one (any age, dementia or something else) had to go into some sort of mental health facility, would you be happy if their carers were a bunch of untrained average people (often very busy with other things going on in their lives) they'd just picked off the street? Would you accept care from someone who was not only untrained but had no experience of dementia whatsoever? No, obviously not. Yet the world is full of untrained carers exactly like that, looking after loved ones at home without a clue what they could/should be doing, without any professional help. And that's supposed to be OK.

On a few occasions I was called upon to 'deal with' my mother when she was behaving erratically. (Euphemism for kicking off big time.) But I'm her daughter, not a mental health expert, geriatrician, psychiatrist or even trained nurse. How should I know what to do? I'm not trained to deal with such things and I certainly had no magic power over her. Family members are often put in an invidious position that they never signed up for! And unfortunately, certain individuals in the medical profession and social services like to heap on the guilt if you don't step up. No one considers existing family dynamics either and many of us know just how big a problem that can be.

Note to @CoastalPair I have no faith in medics and SS people either. I had little before mum's dementia but the poor care, sheer lack of attention, etc, she received at the hands of professionals scared me to death! You've only got to read accounts of hospital visits and moves to a care home here on TP to realise these things are NOT a one-off unfortunate mishap but endemic problems in the system, which as you say, is all about the money.

I'll shut up now. Not having a good day... I shall go and cuddle my 4 cats!

 

[silkiest]

Hi @CoastalPair , I believe you have been mis informed. Money from private or occupational pensions do not count as income when applying for carers allowance. If you have been turned down please re apply or appeal. Age UK are really good at helping people fill in forms

 

[Bunpoots]

Hugs from this one too @Jaded'n'faded

 

[jaymor]

If you are of pensionable age then you cannot have carers allowance. It’s always best to apply because it does count towards other benefits being available. Having the pension disqualifies you from having Cerers Allowance.

 

[Pots and Pans]

@CoastalPair If your wife will accept a carer you can apply via SS for a CARER assessment . I am over pension age, also in receipt of a private pension but this isn't means tested and council can give you a direct payment for, say, a day a week - that's what I get but I can book half days as it's up to me how I use it so I can get more, shorter breaks. The allowance is to give the carer a break and you do the caring role far better as a result. Your wife might accept a 'cleaner' for instance ( carers can work round that easily enough). Council may also have carer support groups and Alz Support have workers who provide loads of info, including groups you could maybe both go to. Meet the other invisibles...
Btw we have been lucky with doctors; got referred from GP to consultant geriatrician who we see every few months. Short appointments, but an opportunity to ask about things like meds with someone who does listen.
Sending best wishes and as others have said, this forum is great for the odd vent or rant with loads of experienced carers with tips and support.
Finally, @Jaded'n'faded not at all offended by use of word 'mad'. But prefer the term my OH uses.... going doolally.

 

[Lizbuff]

Oh, @CoastalPair , if I were American, I would simply hold up my hands and say 'Preach!'

Without wishing to cause offence to anyone, I understand that a diagnosis of cancer will result in copious offers of help from numerous sources. Dementia is a terminal disease - not a natural part of the aging process (although, of course, the longer you live, the more likely you are to develop it - but that goes for cancer, too).

My other gripe is about care funding. I share a flat with my 79 year old mother, who was diagnosed with Alzheimer's almost four years ago. We bought the flat 21 years ago as tenants in common. I have cared for her full time for about three years now - I can't claim to find it easy but, while it remains possible, I wouldn't have it any other way.

Had she developed terminal cancer, I would 'only' have to deal with the stress of her care and eventually losing her. As it is, if she does eventually require residential care, once her savings have been depleted, I will have to beg my LA to issue a discretionary disregard and rely on their goodwill to enable me to keep my home! No other illness or disease is treated in this way. May we hope for change in the future.

In the meanwhile, good wishes to you and love, thoughts and hugs to everyone on this forum and their PWDs x

 

[Lawson58]

Here in Australia, people are leaving the aged care industry in droves. They have been overworked and undervalued particularly in the last two years and I have great sympathy for them,

One Care Home Manager who has a staff of 180 has a third of them off with either COVID or who are isolating and she is desperate to provide the appropriate care for the residents. A friend undergoes Rapid Antigen Testing and PPEs up to go and help her mum in a care home because of staff problems.

Another reason why people have left the industry is that they can earn much more money caring for disabled people so why would you go through what care home staff have endured for a pittance.

The fact that many of our aged carers are untrained is the fault of the system that has been flawed for decades, not theirs and until our governments are prepared to spend money to bring about change, that’s what we are going to get. Our medical facilities are crumbling under the strain of COVID and it is difficult for everyone to find ways to cope.

It is easy for us to sit and criticise care staff but I wonder how many of us would want to go and do their job for lousy pay. They are trying to work in a system that is dreadfully under resourced and chaotic. But it’s not just a matter of underpaying people who do this work. That simple fact alone says that we don’t value or respect them.

 

[canary]

What Im going to write is my own opinion:

We as a society do not respect our elderly. Much of the population sees elderly people as past their time and merely waiting to die and the government*(which reflects the views of the population) sees them as unproductive and a drain on finances.

I watched a BBC documentary on Harold Shipman and the conclusion was that one of the reasons that he was able to continue killing for so long was because he targeted old people so no-on looked too hard at their deaths.
At the beginning of the pandemic the government did everything to "save" the NHS, but no-one considered the care homes for the elderly, nor seemed to care as covid ripped through them resulting in an appalling death rate in the care homes. I have seen comments on social media during lock-downs saying that young people should not have to pay the price for keeping old people, who would only die in a few months anyway, from catching covid.

All of this reflects the disrespect our society has for its elderly - especially its vulnerable elderly - and financial provision for their care is part of it. Dementia is predominately a disease of the elderly and caring for them is expensive. Very few people are prepared to champion dementia, so research is underfunded and there is little in the way of it.
There is no cure and no treatment, so all you can do is keep them safe and looked after - possibly for years - which is very expensive, so no-one (least of all the government*) wants to pay for it. This is why people with dementias needs have been classified as social, not medical and I dont see this changing now.
Because these needs have been classified as non-medical the (erroneous) conclusion is that no training is required for their care and the pay and support for the carers reflects this.

The whole thig is a huge problem, but no-one wants to admit it and government* is unwilling to sort it out properly because they know it will take a huge amount of money and they do not consider this an economically sound use of resources.

Much better (in their opinion) to tweek the system a bit, trumpet it as "solving" the issue, sweep it all under the carpet and leave us unpaid carers scrabbling around for the few scrap that are available.

Rant over

*Edit to add that when I talk about "the government" I do not mean any particular party - I think that they all feel the same.

 

[Helly68]

@canary - I think you are spot on there. Ageism at it's finest. No one thinks these issues are easy, but they never really try to look for longer term solutions. On of the biggest scandals/sadnessess for me, is probably the most useful thing you can have, starting on a dementia journey, is money. No one wants to admit how much we are all going to need to pay to sort out social care or how unfair the situation is for those affected by dementia. There are also a number of other conditions affecting the elderly (osteoarthritis being one example) for which there is little treatment. It is seen as being "just one of those things", despite the pain and imobility it brings. Yes, we have to accept that our bodies age, but if we are keeping people alive for longer, we need to think carefully about quality of life - for the person and their family or carers.

 

[Dunroamin]

Welcome @CoastalPair . Firstly I sincerely hope you are able to keep your promise about no carers for your wife and that the toll on yourself does not become too much. Please be careful.

Regular posters will know that I am a retired medic and also a PWD. I know how both the NHS and SS work . On diagnosis we were left to negotiate non-communication between all areas of both organisations. Had I been a layperson, we would still (largely) be no wiser. Things did improve following a formal complaint to the Ch. EX. of the trust whom I mentored decades ago! Few people who complain would receive the in-depth response that I did.

The NHS besides having few resources to support us, have no idea what to do with us. A policy of containment has developed with little thought for holistic care. There is no cure so why bother?

It is ethically wrong that I, as a person who knows the 'system' was able to initiate improved care pathways However, since diagnosis in 2019 things have now settled to the more invisible approach by those who should know better.

MY concentration is going now but there is so much more I could say. We will follow this thread as I am sure others will be joining in

Posted with assistance.

 

[Jaded'n'faded]

It is really good to read all these posts. There seems to be some consensus that dementia is still 'pushed under the carpet' and because it is mainly a disease of the old, no one really cares.

It's actually hard to see this changing: unless (as @canary says) we start to value old people, money will always be directed towards the young. (Which is maybe the right thing - the money that is, not the lack of respect.)

Carers are mostly untrained/inexperienced simply because they are paid minimum wage. No one expects a fully-trained person with considerable knowledge and experience to work for minimum wage in any other industry! There is little or no career structure so why would someone choose to go into the profession?

@Dunroamin your experience with 'the Big Boss' shows only too clearly that it's only if you shout very loud (or are able to take your complaint to the right person) that you get mistakes put right or in some cases, get any action at all. Many of the people posting on these boards are intelligent and articulate, with the wherewithal and know-how to fight their corner on behalf of a loved one, but even so, they struggle with the system. Where does that leave all those people with dementia who don't have families or are estranged from them, or those who don't understand the system or how to go about getting help from those who do? Goodness knows what happens to them, what indignities they suffer, what callous decisions are made about them because there's no one to speak up for them or look after their funds. And by definition, we never find out. I dread to think what atrocities we don't know about. If an 89 year old spinster with dementia ends up in hospital after a fall, who makes sure she is looked after properly, that all her medical records/history have been correctly noted, that her teeth or her jewellery or hearing aids don't go missing? Who brings her clean clothes or insists on a new asessment or a best interests meeting? Who checks if she would like the home they stuff her in before taking over her funds?

I don't have any answers and it's easy to complain and find fault. Dementia is a very difficult thing and an awful thing, so let's at least admit that. For a sentient being to become gradually non-sentient (note I didn't say sane/insane!) must be the worst possible thing that can happen to you. And equally distressing for those who love you. When someone you know inside out becomes a stranger or acts in ways that make no sense or is angry and paranoid, it's hard to be around them. It challenges us in ways that - to use a phrase my kids say - really mess with your head! It is no wonder that many of us suffer PTSD.

I also think balancing the rights of people with dementia who can no longer make decisions for themselves, with their expressed wishes before dementia, is a complete minefield. Far more discussion is needed about this though I'm not sure if any progress can be made. There will always be two schools of thought - those who believe that life must always be preserved and those who don't. That's such a fundamental belief that I don't think either side will change their opinions. Maybe the prospect of dementia incidence tripling globally by 2050 (figures I read today) will bring the issue to the fore.