For some time now, I’ve been putting off writing anything here. Mainly because I need to write about Mum but I’m just so burned out with the whole dementia circus that when I sit down to do it, I can’t. I know I’m in trouble, but there’s nothing I can do, no way out, and for the next ten years, I know it’s just going to be more and more of the same grinding awfulness. Wednesday’s visit to Mum was lovely and she was in great form, so it’s not like there aren’t good days. It’s just that I’m in the kind of bad place, mentally, where I’m having trouble seeing them. I think this is because there is too much Mum stuff and it’s time sensitive so I can’t spread it out.
Settling this next stage for Mum is dragging on, and on, and on, and on, and on. And I can see no end. And it’s taking everything, so I’ve nothing left for writing. I’ve hardly written anything in six months and that is not a recipe for happy me. There has to be writing, and right now, until the next year of the Plan is settled for Mum. There’s not.
Which means I’m as miserable as sin.
‘Last night, I dreamt that Mum had died, peacefully, in her sleep. My overwhelming sense was one of gladness and relief. When I woke, and realised it was all a dream, I was absolutely miserable.
How the fuck does that even happen?’
OK, so I’m putting it in quotes but it’s not really a quote, it’s what I said when I woke up on Tuesday.
A lot of looking after someone with dementia is wishing them dead before the grim bit starts and then feeling really guilty about it.
It’s not that I don’t love Mum. I love her utterly. It’s not even that I find her difficult to love the way she is now. Far from it! It’s not that I can’t enjoy her company the way she is now, again, far from it. We have really good fun some visits. It’s just that I miss real Mum so much and I want her back. And I know she’s frightened and I don’t want her to go through the scary last bit.
‘Please God spare her that,’ I beg.
‘Fuck off and do one, Mary,’ says God.
Mum’s been petrified of getting dementia all her life. Scared enough to mention it to me on numerous occasions. And now … I wish her a gentle death while she can still be in denial. I want her to die before I have to mortgage her house from under her, or move her somewhere else because we can’t afford the care anymore and there’s nothing else left to sell. And who knows, she might be find if she goes and lives with my bruv. It might be fantastic and we might end up wondering why on God’s green earth we didn’t do it sooner. But her family are her carers now and leaving them would definitely be a wrench. And I can’t write this stuff without crying, and I just can’t cry right now or I’ll be undone. And I can’t be undone. And I’ve cried so much already. I’m so bored of being sad and crying.
That, right there, people is my baggage.
Let’s unpack it!
Let’s not, I hear you cry. Unlucky. This is my blog and I can do what I fucking well like. Also, I’ve had vertigo for seven days so I’m not in the mood to be tactful, gentle, accommodating or, in fact, to be pleasant in any way. You have been warned.
Right then. MT pauses to put her rant goggles on. I’m going to rail at the system here. It’ll do fuck all good but it makes me feel better. Off we go.
What kind of person does that statement in the big letters up there make me? Probably a git, but mostly, just an exhausted one. If you are diagnosed with any form of dementia and you are unlucky enough to live in the UK you are absolutely fucked. You see, we have a national health service, but it’s chronically underfunded and has been by successive governments. Case in point, Doctors have had static pay or tiny pay rises for so long that, in real terms, looking at what they earn versus cost of living increases, they claim their pay has dropped by 30% in real terms. I can believe it.
The NHS is full of agencies employing other agencies, ‘to save money’. But agencies are a false economy. For example, say you need help after an operation. In the area where I’m familiar with the rates of car fees, the NHS is paying £25 an hour for the people who pop in twice a day to and help you dress and undress. A self employed carer will cost you £15. Agencies do the admin, so basically, the NHS is paying £10 an hour for admin for each patient. That’s because it looks cheaper on paper than employing a bunch of people to do the care and others to administer it all in-house.
Since it’s as cash-strapped as the rest of us, the NHS is always on the look out for ways to save money. One way is to discriminate against people with illnesses which are expensive or lengthy to treat. Come in Dementia, your time is up.
You see, there wasn’t much to do at the end of World War 2 except shag and have babies. There was a huge population explosion. Now all those kids are reaching the age where they are getting dementia. That’s a lot of people at once and that’s expensive.
What is the NHS response to this? Well, since Dementia patients are expensive to care for and successive Governments were refusing to find it properly, the NHS dumped its dementia patients. They now refuse to provide ongoing care to the majority of dementia sufferers. Occasionally people take them to the High Court and they are forced to provide ‘free healthcare at the point of demand’ for a dementia sufferer the way their charter says they’re supposed to. But it takes many years (1998 – 2011 in the case of the lady I know) and more energy than most people who are trying to look after someone demented have to spare. The only people with access to dementia care from the outset are the lucky ones who have no savings, and even then it’s a post code lottery.
Drugs? Yes, they’ll give you drugs (much good may it do because did I mention that THERE’S NO FUCKING CURE!) Stuff you really need, ie support and care? No.
Dementia is the long slow death of a thousand tiny cuts. It takes years to die of dementia. Bit by bit, little tiny piece by little tiny piece, you fade away. Worse, because the NHS made this decision not to deliver ongoing dementia care relatively recently, the current generation of dementia sufferers with more than £14k to their name have not taken out insurance, or planned for treatment. So we have this broken, semi-American system where half of it is free but there’s only nascent insurance to cover the other half. Indeed, if you have dementia, and savings, you will need a craptonne of money and there is NO financial advice about managing this. There are millions of people in the UK facing this every day and you cannot find financial advice for love nor … well … yes … money. All you can do is find folks who will help you with the various aspects, mortgages, care annuities etc.
Unless a person with dementia has less than £14,000 in the bank, the only available care for them is what they can pay for, or family members. Bear in mind, I have admitted that I’m struggling to cope with Mum’s admin, being a mum and trying to write the occasional book. But I am not trying to look after a spouse with a profound cognitive disability at the same time. Mum was.
If you look at guidelines for carers, what their hours should be, their rest breaks etc, you will see that there are laws about this. The tacit implication of that is that Government acknowledges that being a carer is not a job one person can do alone 24/7 year in, year out with no respite. Ever. Except that they clearly think that if you have a family member with dementia you have some magical bionic transformation because that’s what the family of every single dementia sufferer in the UK with more than 14k in the bank is expected to do, until the money runs out.
If ever there is a group of people who need help facing their illness it’s dementia sufferers and their loved ones. Dementia ravages everyone involved. It’s horrific.
If ever there was a group of people with less help available facing their illness, it’s dementia sufferers and their loved ones. Ha fucking ha.
I guess what I’m saying here is that Mum’s dementia was almost certainly brought on by the stress of looking after Dad, with his. Old people are proud and they won’t accept help. In the case of Mum and Dad, at the beginning, I suspect they also knew what ‘helping’ would do to me and my brother, and as loving parents, they tried to protect us from that for as long as they possibly could, which turned out to be until Mum’s health broke down in 2015. We finally managed to get her and Dad live-in care in the Spring of 2016.
Right now, this seems to be the story with anything in the NHS. Once again, it’s a false economy. Like their bizarre insistence that I could not have a knee replacement until I was 60, meaning that I now have arthritis in my other knee and both hips from walking awkwardly due to the pain. Even if they can fob me off about the other limbs when the time comes, they’ll still have to provide me with a wheelchair, painkillers, crutches, someone to help me wash and dress every day … I doubt a couple of years of that are cheaper than a 12 grand knee replacement, yet the whoever is in charge of this stuff at the NHS is clearly convinced they are.
Going back to dementia. You might ask why I think this is unjust. Why I believe people deserve to keep their life savings.
Well, first of all, while I know and understand the fact that by the time I’m elderly, any kind of healthcare will be a luxury for the rich these people don’t. They were led to believe they would pay taxes and that those taxes would buy them free health care and security in their old age. They were led to believe, all their lives, that Britain was a welfare state and would remain one. I think one of the cruellest things about dementia is that, unless you’re lucky enough to die of something else first, it takes years and years to die of it. A dementia diagnosis in the UK is a fast-track to slow-motion destitution and death.
If we really have to punish people for saving and putting money aside for a rainy day, then, for the love of god, can’t they keep their house? It’s the saddest thing that, from the Hippocratic Oath/compassionate medicine side of the equation, it’s well known that a dementia sufferer will do better in familiar surroundings. The nature of the disease is such that usually, they have to go into a home at some point, but in the initial and middle stages, a change of surroundings will confuse them more and accelerate their condition.
As I understand it, this is a known medical fact.
Her knowledge of this is the reason why Mum didn’t downsize when Dad was ill — because it would confuse him — and of course, by the time Dad finally died she was too demented, herself, for us to do it. This being the case, you’d think that there would be a mechanism for a person with dementia to stay in their own home, wouldn’t you? But oh no. If a dementia sufferer is living alone then, once their money is gone, they must sell their house and everything else they possess to fund their care fees. They might have paid taxes and worked all their lives but they must now surrender the money they’ve saved. The money they’ve already paid tax on so that they could have free healthcare.
Obviously having dementia isn’t shitty enough, oh no, the NHS the Government the local authority or whoever the fuck it is sure as hell isn’t going to look after any demented person until they’ve been stripped of everything.
How is that humane? Every step of dementia care in the UK right now seems to be along the lines of, ‘How can we make it worse for them? What will make them suffer more? Hey look! This one lets us shit on their families as well! Good-oh! We’ll do that.’
Worse, it’s not just cruel, it’s dangerous. Because dementia care is a social services ‘problem’ and down to your local authority, it means that whether or not there’s a place in a secure home for you is very much a post code lottery. Here in Suffolk, there are people who have to travel 60 miles to Peterborough to visit loved ones because that’s where the nearest secure dementia home with a place was situated when their loved one needed it. There are other people who regularly pick up demented wandering parents from the police station after they’ve been found wandering at night … because there isn’t even a secure place for them 60 miles away in Peterborough.
Luckily for Mum and Dad, Sussex contains the south coast and towns like Worthing which are still home to large numbers of elderly people who appear to have gone to them to die and then forgotten what they went there for. Despite being a bit more hip and nascent Brighton spill-over, Worthing is still well supplied with elderly people and care homes. Even so, it took three weeks to find a place in a secure dementia home for Dad while he was in hospital, and that was only because we had already started the process with Social Services and they were already looking to place him. We were incredibly lucky.
People with dementia need secure care, or an adult living in with them because otherwise they do weird things; they go walking along the A14 at four in the morning in their pyjamas because they think it’s day time, they drive down streets on the wrong side of the road, they go ‘home’ to someone else’s house in the middle of the night because they used to live there and they’ve forgotten they don’t any more, they get confused at road junctions and end up driving the wrong way down a dual carriageway (these are all things demented people have done and in all but one case, they are the demented loved ones of people I know). And sometimes, when they do these things, especially in cars, other people get hurt or killed. It’s not just the carers who are broken apart.
Cutting out dementia care isn’t only ruining the lives of those who suffer from it and their families, it’s harming a whole host of invisible others.
I wish I could say that government or anyone anywhere gave a flying fuck about any of this, or us, but it isn’t true. I’m just railing into the wind. I know that … but it makes me feel better.
Thank you for listening.
On a completely different note …
If you want something to take the taste away from my insane rantings, there’s always a free book.
Yes, Small Beginnings, K’Barthan Extras, Hamgeean Misfit: No 1 is free to download in ebook format from all the major retailers and you can also get the audiobook for free from my web store.
If you think that sounds interesting and would like to take a look, just go here.