It would be my Mum’s 91st Birthday tomorrow and it feels surprisingly weird. For starters, I had a horrific dream that the ongoing stomach thing went comprehensively wrong while I was out with friends. I dreamt I had stomach cramps and thought nothing much about them, little realising that I was actually bleeding to death at a wine tasting. The final death scene, where I keeled over and hit the deck in front of all the horrified wine tasters, threw me a bit, especially as it was what I called a deja-vu dream, which is difficult to explain but is just my slang for dreams that mean something.
Thinking about it, I suppose I tend to dream about death when I’m processing a change in life. I suspect it’s pretty standard for most people, fear of the unknown, fear of new because what is death, after all, if it isn’t a step into the unknown?
Mum.
In a few weeks, it will also be the first anniversary of her death. I miss her terribly. Even demented Mum although it’s undemented Mum I yearn for; the lovely mercurial, funny, lively lady who gave ZERO fucks about making a tit of herself if that’s what doing the right thing entailed. The fabulous cook. Her boundless hospitality and her kindness and good humour and her unerring instinct as to what The Right Thing To Do was at all times.
And weirdly, I miss my Dad. It really felt as if he was there over those last months, when the money ran out and I accepted that we were going to have to move Mum. I know The Pan of Hamgee has virtual parents (cause, write what you know, hey? And I definitely did there). I kept hearing little snippets of ‘Dadspeak’ in my head. It felt as if he was with us most of the time as Mum got ill and also after she died.
Dad
I think, because of that, I miss undemented Dad too in the same way. The joyous fun-filled bon-viveur. The patrician rebel. The very dapper man who looked so establishment yet had a wicked sene of humour and loved to prick the bubble of the pompous, and of course, ditto with the right kind of no fucks attitude to making a prick of himself. It’s not so hard apologising, it really isn’t. I find it really hard to understand people who are unable to admit they are wrong or back down. Dad and Mum would just say, ‘oh dear, have I made a boo-boo?’ or something similar, apologise and move on.
I miss the seemingly boundless capacity for love and kindness towards their fellow humans in both of them, their sense of duty. They were giants of people. It’s a lot to live up to.
All that about love and doing the right thing makes them sound terribly serious. They weren’t, they were just unbelievably open and accepting. There were two kinds of people in their world, people who were twats and everyone else. I think my parents were in their 80s before I met anyone as unshockable and accepting as they were, although I’ve since been lucky enough to find more of them.
There were gargantuan meals, a lot of my family life was about eating—they took the agape thing seriously—there were huge Sunday lunches, or small ones, depending on how many people they found who ‘weren’t doing anything’ on Sunday. Their dedication, at Lancing, to giving a slap-up Sunday lunch to any stray younger members of staff or boys left in the house on exeat weekends, and failing that, my or my brother’s friends. There was laughter, the silly stories and Dad’s impressions. The stories they told against themselves because they were funny. The humour, warmth and laughter. Their home was a sanctuary; not just to me but to many others.
Love is in short supply at the moment so I miss the pair of them more keenly. I miss the way they lived their faith, their principles, their strength of character and their courage. My parents; my guiding light in how to behave, my moral compass in many respects. The light has gone out. Now I have to be the light and I’m a long way behind them.
For some time, I have been thinking, that I should write a memoir about Mum and Dad. The rationale behind it was to paint a picture of what it’s like walking the dementia journey. Taking the hand of someone you love and walking beside them, into the dark. The things to look out for and be prepared for. The things which will hurt and maybe, ways to deal with that pain that helped me and might help other folks.
But I’m having trouble starting. Maybe I should just write. Barf it all up onto my computer and sort it when I’m done. I dunno. I find myself writing two memoirs. The dementia one and one about them and the ridiculous stories they used to tell. And their ridiculous peccadillos. Dad was pretty much a walking compendium of the Guide Michelin, if you mentioned a place he’d be able to tell you about a ‘red underlining’ or a ‘knife and fork’ etc. His holiday reminiscences comprised lists of the glorious meals he’d had and where followed by a mention of a visit to his very long-suffering French cousin, Marianne, to be ill. He underpinned a lot of his experiences with food, setting life against the background of meals. Mum, I think, was more interested in the random people she met and their stories. She would spend hours talking to everyone and remember who we met and what their story was. I appear to have inherited this.
The second memoir, the one about them, probably isn’t going to work as anything other than a family document.
The dementia one is harder because it flies in the face of a lot of what was true and good about who they were. Especially Dad, because he was one of the most empathetic of people, and it took that from him.
However, putting myself in the shoes of us at the beginning of it all again, all we knew was that people who were diagnosed with dementia tended to become a bit forgetful, then they would disappear and three years later you’d hear they’d died.
None of us knew what happened in those three years. Well, OK, maybe Mum and Dad did, I don’t know. I’m guessing they would have talked about the future when they realised something was happening to Dad’s brain in 2004. They did their power of attorney then had a big 40 year wedding anniversary party because they didn’t think they would make 50. They did make 50 in the end, but it was a struggle and in many respects the photos were better than actually being there.
Even so, I guess what I want is to write something uplifting and at the same time, true, honest and informative so people knew what to expect. I wanted to hold their hands and guide them through it. Because it’s less about managing the demented person to be honest and more about managing yourself.
There was no guidance for us; nothing and in Mum and Dad’s area, one of the excellent charities that might have helped and guided us didn’t operate in Sussex. There is still no other guidance than charities in most places and for us that was simply a string of being told ‘we don’t but x might’.
So yes, I guess I’d like to help other people taking their first steps on the road. Shine a little light onto the path ahead, or the shapes that might be coming out of the dark. At the same time, I also want to send a message to the powers that be. Look at this you utter bastards. This is what you’re doing. To tell them the whole truth and not hold back.
However, there are points where it feels a bit disloyal, to Dad especially, because his dementia affected his personality more. When Dad started to show signs of dementia we didn’t know what to expect. I owe it to others to tell them, but I owe it to Dad to do it the right way.
The explosions of unexpected, hurtful anger would have mortified pre-Alzheimer’s Dad. Maybe I should just stick at no-one will tell you, no-one will commit to anything, there are organisations who will help but no-one will tell you who they are or how to contact them. Because they really won’t. Even in 2015, a mere four years before the Alzheimer’s ran its course, we were like lambs to the slaughter. We hadn’t a fucking clue what was coming.
‘What will happen to Dad, how will the disease progress?’ I used to ask the professionals.
‘We can’t tell you because no two people are the same. Each person’s journey is different.’ They always replied.
This is true in some respects, I mean, clearly no two people’s journeys are the same. But in others it’s complete bullshit. Indeed, what it really means is, ‘We can’t tell you what you’re in for. It’s too horrific. If we’re too honest with you, you’ll never stay the course. You’ll run or worse, we might have to offer you some meaningful help.’
At the time I was angry in the face of what felt, to us, like a conspiracy of silence. But now that I’ve reached the other side and I come to talk about what it was like I too feel reticent.
I want people to know but in some ways, it’s easier to talk about Mum, because the dementia was kinder to her and it never took away who she was. While at the same time, it’s more difficult in other ways because her loss of cognition hit me harder. I’d been trying to get her through Dad’s journey alive and well so she would have time to mourn, regroup and relax in her last years. I wanted her to have just a few years without a care in the world, where we could just be friends.
Well, actually, I suppose that even with the dementia, that is pretty much what we did for her but not entirely. She was going to downsize and possibly move into the retirement flats just up my street, if I could find her one, or near my brother, or if she couldn’t decide, somewhere smaller in her village. Instead she insisted she stay in the house which, though lovely, was bleeding her dry almost as fast as her care costs.
The same milestones came and went on the descent; the day she forgot where ‘home’ was, the day she asked if her parents had died, the day she said she thought I was her sister … but she was always kind and never lost her sense of the ridiculous or her sense of humour. She could laugh at herself until the very end. It was easy to align myself in the moment with her. (With the exception of when I looked after her one Christmas and she was knackered, way more demented than usual and I got 4 hours sleep in 3 days. That was the one where I burst into tears and begged her to go back to sleep at 2. am. She was very irritated with me but did, at least, do as I asked.)
Even though her brain was ravaged with dementia, she still had the same startling amounts of intelligence.
With Dad, I feel disloyal describing some of the things he said and did under the influence of Alzheimer’s because it wasn’t who he was and I don’t want him remembered that way. But also because I realise now, as I encounter more and more people who are treading the carer’s path, that despite Dad saying and doing some truly horrible things, he actually fought it with everything he had and I don’t want to do anything that might underplay that, like describing times he was awful in too much detail, for example.
It’s left me unsure how to explain what happened to us, how to paint the distress and the horror Alzheimer’s causes enough for any readers in authority to take notice, without demeaning the people at the centre of it or terrifying readers who are carers at the start of it. Because yes, it is bleak, and fucking relentless, but there are moments of lightness. Dementia care is a model lesson in the maxim that you only get out what you put in. But the ever-present grinding reality of it makes it hard to find the mental bandwidth to make that commitment sometimes.
You have to learn to look for the moments of joy among the disconnected brain fuzz. You have to learn to pivot to stay alongside your person with dementia. You have to make it all about them because they are incapable of thinking about you and that, in itself, is a horrible thing to come to terms with. It can be done. At a very high cost to the carer, for sure, but in the long run, it comes at a cost that’s slightly less high than not doing it.
Then there’s the political side. The righteous anger I still feel at the injustice of a system that asset strips the most vulnerable people because it knows they are too exhausted to fight back. The fact that care provision is a postcode lottery and there’s no information, no help, no guidance. If you’re in Sussex, they offset the value of care costs against the value of your house up to 100%. In other counties, they very magnanimously allow you to keep £250,000 worth of the house if it’s worth more than that.
Nuclear powered sheep
There’s a lot of ‘signposting’ and most of it takes you a very long time to be signposted to another body, round in circles, via many hours on the phone on hold. Everything is stacked against you, benefits, the care system, social services, all of it.
Carer’s allowance, for example. You have to be spending 35 hours a week on care for your relative. But if you have small children, you don’t have 35 hours a week, you probably have about 15 or 25, tops. You might be looking at a part time job, except if you’re a carer, even at a distance, you’ll be spending all that time running someone else’s house, paying wages, bills etc. Oh and sorting out an endless stream of small domestic disasters.
’Darling a man rang, and I’ve given him my bank card details.’
’Don’t worry Mum, I’ll stop the card.’
So that’s 4o minutes wrangling the India based call centre. Then sorting out who needs paying what and paying them and not forgetting to take £200 cash down with you next time you visit to tide them over until the new one arrives. Heaven forefend that there’d be a branch of a bank you could go into or that your non-standard problem will be comprehensible to the help bot AI.
In my own experience, as my lad got to school age, I wondered about part-time jobs but the day a week I did visiting, the emergencies, wages, banking, wrangling with government bodies, utilities, their ISP and all the other bits and bobs, plus the fact that I could only work during the school day, put paid to it.
I spent all my free time sorting out Mum and Dad but the non-mum time I was doing it in didn’t amount to 35 hours a week so despite my activities meeting the criteria for carers allowance I was ineligible. I am guessing a lot of people with kids who are carers at a distance are in that situation, which is probably why carers allowance is set at 35 hours a week and not a lower amount.
Or maybe everyone else just lies on the form. I dunno.
Lastly, the relentless sadness. Being sad makes you unproductive, unable to concentrate, listless and lacking in energy. It makes aches and pains worse, it does pretty horrendous things combined with the menopause. When it all began, in 2012, I had a course of cognitive behavioural therapy on the NHS which was a godsend but I was still sad and being really sad for 10 years does take it out of you a bit. It’s only now I am beginning to realise how much it took.
As I understand it, this side of it is a bit more hands on and ongoing now. At the time, all they could offer me, after I’d done the CBT, was depression meds. But a regular side effect of depression meds is brain fog and as that’s a very marked side effect of dementia care, too, it was the last thing I needed. And that’s the thing. A lot of dementia carers aren’t depressed, they’re sad. Depression is ill. Sad is a response to outside stimulus. It’s not the same thing.
So … in a nutshell writing a dementia carers memoir is hard (no shit, Sherlock):
- It’s hard to outline the difficulties without sounding graceless about time I actually gave willingly or sounding like I’m bitter and twisted, and railing angrily against everything.
- I still can’t talk about what people should expect from the NHS and other bodies—asset stripping the vulnerable anyone?—without actually being bitter and twisted, and railing angrily against it.
- I probably need to let some stuff go. For example, I hold the care system responsible for my mother’s vascular dementia as I’m pretty bloody certain it was brought on by the stress of navigating the care system while looking after Dad, with his dementia. It was her choice, and I can only marvel at her courage because I’ll bet she knew what it meant. She did what she believed was right for Dad, and in the absence of any help from social or NHS care, she did what she believed she had to do if she wanted to be able to look at herself in the mirror every morning. It killed her brain.
- It’s hard to outline what happens over the years as dementia progresses without devaluing the worth of your loved ones who suffered it.
- It’s hard to be truthful about some forms of dementia and to shed light on what to expect from the journey without terrifying others.
That’s my conundrum.
With two outstanding exceptions, most of the memoirs I’ve read about this have felt falsely upbeat. Oh there is an up, there are fabulous moments, but the darkness is greater. It wasn’t an upbeat experience, even if there were times of joy or happiness, times of beautiful and heart moving poignancy, and times that were funny. Dementia is a lot of things but it isn’t fun, and while there are dapples of sunlight on the shady path, the secret is managing your levels of acceptance and surrendering all semblance of controlling your life. The dementia controls a lot of your loved one and by association, it controls you. It feels never-ending, it’s exhausting, there is fuck all help, and it lasts years. The only way to survive it is to accept that truth and adapt accordingly.
It’s hard, it’s sad and it’s relentless.
How do I try to help someone prepare for that? I can’t even research it and give them answers, or organisations to turn to, because they are not the same in any area. Sod it! They vary from town-to-town. No! It’s worse than that, they vary from doctors’ surgery-to-doctors’ surgery, let alone county to county, or health authority to health authority.
I set out with all these grand ideas but there seems to be a bit of a gap between intention and delivery. Maybe I just lack the skill to write this yet. Or maybe if I just keep writing about it, my scattered thoughts will crystallise and clarify. Who knows.
Onwards and upwards I guess.
And now for something completely different …
That was a bit grim. Sorry. Let’s lighten the mood. If you need cheering up there’s always a bit of K’Barthan invective. Yes, I have made a K’Barthan Swearing and insults Generator. It has taken me a long time because I take to coding about as well as the average cat would take to obedience classes but finally it is done.
If you’d like to see it you can find it here
K’Barthan Swearing and Insults Generator … Click Here.
Until next time then, toodle pip.