It’s a bit of a mixed bag this week. On the one hand, life is getting slowly back to normal, people are allowed out to visit other people and I have been visiting my significant family member: my mum, for two weeks now. On the other, I’m gutted. It probably says a lot about me that I am actually sad that lock down is ending. I’ve enjoyed the absence of traffic noise, the friendly waves at people, and the laughter as we try to make crossing the road to avoid each other look a bit less pointed! I’ve enjoyed the walk every day and I absolutely loved the bike ride I had round town along smooth deserted roads rather than squeezed against the kerb, buffeted by endless streams of resentful traffic.
OK so the lappers/boy racers in their souped up 500cc insurance punishment vehicles were still driving round, and round, and round, and round, and the blokes on the big bikes that corner like a waterbed and have an engine note that sounds exactly how I imagine a whale fart does, but everyone else had stayed at home.
There was a day, a week and a half ago, where the traffic picked up again and I noticed this horrible petrol smell in the air. After wondering what it was, all morning, I realised it was traffic fumes. It smells of traffic fumes where I live, the entire time, and I never even noticed that until it went away for a while and came back.
The pace of life in lockdown has been slower. I’ve enjoyed the company of my husband and son and having time to write. There is much admin I need to do but I can’t because it’s lockdown. Hoorah. Next week I’ll have to find some bloke to come and look at a wall at my mum’s, sort out a donation to the place where Dad’s memorial service was held and re-arrange shots for my cat, my and my son’s dental appointments and a whole host of other jizz which will suck in my time. On the up side, hopefully my writer’s circle will be able to meet for our next get together. That will be wonderful as we are, all three, vulnerable, so it will be great to get together again. It was also lovely to have a socially distanced encounter with friends last night.
That said, I think part of the slight feeling of malaise that rested on the beginning of this week was about Dad. You see, after a year, when someone dies, you have a year’s mind. Which just means you think of them in church. Dad’s was last Sunday. I wasn’t in church and that was a bit sad. So sad that it caught me completely off guard. As I sat in the garden live streaming a service from somewhere, I burst into tears. After a while it wore off but I never shrugged off the sadness throughout that day. I should be remembering Dad, like properly, with prayers and things. In a church. But that was probably as much about how important a weekly bout of quiet time interspersed with the singing of hymns at an anti social volume is to my mental equilibrium.
Later that day, we had a zoom chat with friends which, strangely, left me feeling even more isolated. I’m not sure why, and then when I hit the shower, I started blubbing like the giant girl I am and couldn’t stop. I’m a firm believer in letting these things ride their course so I let it all hang out for a while and finally when the flow appeared to have slowed up enough, I put my jammies on and sat on the bed.
There’s usually a reason for outbursts like this so I like to try and work out a plausible explanation. Understanding it helps. It’s not going to stop weird stuff like that from happening, but if I can put my finger on a bona fine reason, it’s less scary. Partly it was a simple case of missing Dad. The further away I am from the well-meaning but cantankerous, Father Jack-like gentleman suffering from Alzheimer’s the closer I become to Original Dad. I shouldn’t say that both Dads were real, but one was the original and the other was like bad archeology. A wild guesstimate of the man constructed from the things that were left.
But the other thing I was missing was my mum. I realised that I was mourning for her as much as for dad. Lively, smart funny Mum, who read all my books, who knew all the family history, who could cook better than most of the restaurants I’ve visited. Mum who had a garden full of people, ‘you can’t cut the head off that, it’s Betty Leigh-Pollet’ she used to say when Dad demanded that a bush in front of the window be cut down so he could see more from his seat in the drawing room.
Now, on bad days, Mum has reached a similar stage of anchoring herself to the TV, as if it will keep her alignment with space and time. She now sits and gazes out of the window. She has issued orders and Betty Leigh-Pollet’s head has been cut off without a second thought, and ‘Betty’ looks none the worse for her experience. Mum’s forgotten who all the plants are. Sometimes she remembers, other times, only that she got them from somewhere, sometimes she’ll say that she got them from … ‘that nice woman, you know the one, lives up the road, had a husband called Roger who dropped dead in the garden.’ Sometimes I’ll be able to tell her, on the back of that, who she got them from, other times, I won’t.
She’s forgotten the things she couldn’t do. She’s back to fretting about earthing up the potatoes but at the same time, understands she can’t do it. Not because she’s remembered that she isn’t supposed to be digging like that, but because she still remembers that the potatoes are in a part of the garden that’s out of the range of her emergency help button.
‘How old am I?’ she asked me the other day.
‘Eighty seven,’ I said.
‘Good heavens! Am I really, I can’t be can I? What year is it?’
‘It’s 2020, Mum.’
‘Goodness! I thought we were in the 1990s.’
Mum hasn’t gone at all, she’s still very much as she was, but the changes are beginning to take place. Last week she told me she’s voted conservative all her life, she has no recollection of the fact she’s voted green in every election since about 1996. It’s weird. And it makes conversation interesting because I never quite know which Mum I’m going to get, the sharp as a whip, switched on Mum or the one who is convinced she and Dad bought their house for £40 in 1986 (they bought it for a lot more than that in 1972) and thinks I lived with her and my uncle during the war.
Sometimes, she’s more than much-muddled, as she calls herself – or very much-muddled on a bad day. She’s started having strange ideas, bizarre theories. Suddenly, after telling us, for years, that she’d like to stay in her house until she dies but that, after she’s gone, though it’ll make her sad, she appreciates we may have to sell it, she’s started talking about changing her will so the house is left to her oldest grandson because, ‘it must stay in the family, it must be protected.’ The point is moot, since selling it isn’t an issue and anyway, she ordered me to activate the power of attorney over her finances some time ago, which I did, because no way is she in control of enough faculties to change her will. But it’s kind of strange.
She’s been telling me she wants to take on an extra gardener because the lovely couple who are doing the garden for her at the moment, ‘can’t cope.’ One minute she is telling me the garden looks better than it ever has, the next she’s telling me that the drive must be tarmaced because it has grass growing up the middle. I did finally get to the bottom of this. She is worried she’ll die before her current gardening project is complete. It’s been delayed by lockdown and although she understands about lockdown and what it is, she’s kind of forgotten why the delay has happened and how to apply it to the garden.
Interestingly, she has been a bit more imperious with her team, too. Apparently there’s a lot more, ‘I want’ and a lot less, ‘could you please …’ I don’t know what to make of that. What I have ascertained is that she’s nervous, in some ways, but not afraid to die, and not afraid of dying alone. She’s worried about dying before the garden is ‘finished’. Although it looks pretty fabulous to me.
We’ve had the conversation about coronavirus. If she gets it she’d like to stay at home but she appreciates that she a) can’t look after herself and b) can’t expect others to put themselves at risk to do so … not even my brother and I, because we have small children who need their parents to stay alive. So she’d have to go to hospital and die alone. She’s totally alright with that. ‘I have a faith and John’ (Dad) ‘is waiting for me.’ It’s still a grim conversation to have but the point here is, that she can think stuff through, a lot of stuff, but not all of it.
She’s OK really, so what was I crying about? Well, it’s like this.
When your loved one gets dementia there’s a horrible dichotomy. On one hand you don’t want them to die because a lot of them is still there and you love them dearly and you want to spend as much time as possible with them while you can. On the other, you want their suffering to end (and yours, watching them suffer) and the only way that can happen is if they snuff it. I don’t want Mum to die. We still have wonderful conversations. I want that to continue. But at the same time, I’m exhausted, so exhausted with looking after Dad, her and Dad and now her. I’ve driven to Sussex every week for five years now. It’s nothing compared to what other people do, living alone with a profoundly demented person, being their sole carer for years with no let up, no break. It’s no surprise that, in couples where one is ill and needs cared for, the ‘well’ one nearly always dies first. But the fact is, for all the knowledge that I have it easy compared to most people in this position, I, me, find it hard. What’s more, my struggle is no less valid for being easier or harder than that of others, just as theirs is no less valid for being different to mine.
Another thing that may have hit me broadside is my position along the arc so to speak. You see, there are certain stages of the dementia journey.
Stage one is the place where your loved one is a bit forgetful, but functioning pretty much as they always have mentally. Stage one is the one where they suddenly forget the recipe for something they’ve made every week since you’ve known them. Or you get a all in church and rush out to find Mum calling in a panic on someone else’s mobile phone to say that she can’t remember the burglar alarm code. This is the stage when you can tell yourself it isn’t anything odd, it’s just ageing, a slight aberration.
When they are in stage one, you bury your head in the sand. It will be OK. It will be a long time before it gets really bad. They will die before they hit stage two. But deep down, even though you are hoping and denying your arse off, you know it’s more than a bit of vagueness.
Stage two is the place where your loved one starts to be a so forgetful it might be dangerous. In Mum’s case it was Christmas 2015, when one of the people who used to come and sit with dad arrived to find both my parents sound asleep in the drawing room and the turkey giblets, in a pan, in the kitchen, on fire. Mum had put them on to make stock and forgotten about them.
The worst part of that, as far as she was concerned, was that she really liked that saucepan. The lovely man who looks after their garden managed to clean it so it could still be used but something had happened to its bottom and it was never the same again.
This is the worst stage, in some ways, the one where you know they need outside help but they refuse to accept it. When you can see the storm clouds gathering but don’t know when or where the rain is going to fall, only that it’s coming. They want to remain independent and you want to let them for as long as possible but there is the very real chance that if you don’t get someone in to check up on them several times a day they will die in a gas explosion, a roaring inferno of their own making … etc … In Mum’s case we were unsure if it was a kind of senior baby brain from dealing with Dad, or a problem she had. Either way she was going to die from exhaustion looking after Dad or they were both going to die from her own hand from left on gas or something similar.
Stage two is the hardest part, where you have to convince the person with dementia to get someone in to help before the shit hits the fan. I failed, the shit did, indeed, hit the fan. I had to drive to Sussex at four am (the second of three midnight mercy dashes). I had one hour’s sleep and then I had to look after both parents, who could do little more than sleep and ask for food at various intervals (like two baby birds). My parents ate a lot of meals too, breakfast at nine, lunch at one, tea at four – usually approximately thirty minutes after the last of lunch had been cleared away – and supper at seven. Then, I had to spend two nights sleeping with my Dad while Mum was in hospital, which meant waking up ever 40 minutes to make sure he got to the loo and back without falling. We had some lovely chats and he was so sweet, but I was dead on my feet by the time I handed over to my brother!
We got someone in after a week to live with them. That’s when the extent of Mum’s dementia became apparent. She had enormous trouble adjusting to a situation she’d have breezed through even six months before, because she was already suffering from memory problems of her own. One of the things I particularly remember was her absolute adamance that it was the Carer who had burned the saucepan rather than her. She berated them for putting things away in the wrong place and not ‘where they’d always lived’ but ‘where they’d always lived’ was a fluid concept depending on whether she was in the 1980s, 1990s 2000s or 2010s in her head.
Stage two though, you can still convince yourself that they’ll die before you lose them.
Stage three is when you realise that the person you love, who has dementia, is leaving you. It’s when you begin to understand that they are not going to die before you lose them. Because since you’ve already watched it happen to your father, sparing your mother would be far too merciful.
Stage three is when you realise that yes, you are going to have to walk beside them. Every. Horrific. Step. Because there’s nothing else you can do for them. And it’s the point when you realise how much, exactly, that is going to hurt you.
It’s the, ‘father if it is possible, let this cup pass from me,’ moment.
That’s what I was having on Sunday.
Stage three is when the person starts to become a bit different, they suddenly like different things or their version of events is suddenly wildly at variance with the real one they remembered. I hate pistachio nuts. But I thought you liked them. No, I’ve always hated them. This after them receiving a bag with pure delight two week’s previously and then opening the bag so you can eat them together like naughty children raiding the larder before lunch (although that’s Dad rather than Mum). They may cling to a couple of stories they remember and repeat them again and again. I have a couple of similar ones that I always add to the ones Mum tells. Do you remember when we did …? Oh yes that was hilarious and thingwot says you did it on x occasion too. Dear thingwot. Yeh, thingwot is lovely, cue long succession of stories about thingwot. That kind of stuff. It works a treat and always gets us laughing, which is brilliant. I thoroughly recommend it as a technique!
This is the place where you discover disconnects of which you weren’t aware: that your loved one thinks you grew up together, for example. That’s lovely because it means they see you as part of the things that make up their entire being. But tricky when you’re trying to pretend you remember what your great grandfather, who died well before you were born, was actually like. This is the stage when you have to face up to the fact that they are not going to die before it gets any worse, that you need to grasp the nettle, get care for them, sort out a lasting power of attorney for their health and finances and generally prepare for the total loss of marbles that lies ahead. This, with Mum, has been so much easier because we were able to keep on a lot of the care Dad had. And while Dad was a wanderer, Mum seems to be more of a sitter. She likes to go out into the garden and potter in the greenhouse, but she doesn’t get agitated and wander off, not yet anyway (hopefully never).
Mum is in completely denial. The doctor is too. He is prepared to get her evaluated but would like to start any investigation with blood tests. She refuses to have them. I’d like to know what type of dementia she has, but if giving it a name scares her, I’ll leave it. I think she’s a bit sort of … well it’s all dementia, who cares which type I have.
Stage three, and usually, you will still be in denial at this point, still thinking that life will be kind and the person suffering will carry on like this for years without any further deterioration and then die a good and happy death, before it gets any worse.
You will be wrong.
This is where Mum is now, I think.
What does it feel like? A bit less scary but still fairly horrible. I know I can do it because I’ve done it before. I know what the stages are but actually, I don’t know how this is going to take Mum. Everyone is different and she is definitely different from Dad. On the up side, she seems much happier and much more ready to accept that she has a terrible memory or sometimes, if required, that it’s us who are all mad, not her. Dad, on the other hand, never swallowed that lie. It would have been a lot easier if he had.
But even though it’s a little kinder, a little easier, it’s so hard. I’m tired now. So, so, tired. For a while there, I’ve had a window on what it’s like not to worry much and an excuse not to take any action (thank you covid for that small mercy). Certainly this time, I seem to have switched off and retreated under a big layer of scar tissue. That’s probably not very good for my mental health but shucks, whatever gets you through right? And it seems to be moving faster with Mum than it is with Dad and I guess that’s … kind of … a mercy.
Stage four. This is where there is now something unequivocally, definitely, bizarre about your loved one. This is where most dementia patients disappear from social life. Usually it’s because they start doing something embarrassing. But this is where socialising them can really help them and keep them enjoying life. Because they will be enduring every last minute of this horrific end. It’s your job to make it as pleasant as possible for everyone involved; them and you. It’s amazing what other people will put up with for the sake of the person they knew before. Try not to be afraid. Many people will understand, many bar maids will laugh along as your father asks them to marry him, and will join in the joke when you explain that he can’t because he’s not a Mormon and already engaged to all of his carers.
This is where you start getting some places used to the dementia sufferer and working out who can’t cope and who doesn’t mind. In our case, the local pub, the local shop and the local church were all brilliant with Dad as was his brother. Doubtless they will be with Mum, too. It’s really important that the dementia sufferer can still socialise as far as is possible, even when the disease finally claims their faculties. Far more people will be kind and gentle than will be shitty. Also, this is the stage where you need to try and evaluate what is and isn’t possible with their particular methods of dealing with life.
They may not sleep well, or at all and that will make their symptoms way, way worse. They may wander at night. Dad did both, although he wasn’t mobile enough to wander so he just used to have a jolly good go.
You might see some of the unacceptable shouty stuff coming out at this point. Not much, just enough to be hurtful. I remember Dad shouting at me to hurry up when I changed his nappy and also getting massively angry at having to wait for a crepe flambé. Cardinal sin committed there, no non-stick pan which meant I should have cooked all the pancakes first and then done the sauce and flambéing. I remember being so upset because he was still quite normal so this sudden total melt down over waiting a few minutes for a pudding was inexplicable – not to mention painful.
If you see any behaviour like this, it means you’ve reached the point where you need decide how much of that sort of stuff you can cope with. If you know you can’t take that, 24/7 now’s the time to scout out a good home and get the dementia sufferer used to the idea of going there. It is wise to choose a home ahead of time, wise but incredibly hard. But if they turn shouty then, once the anger kicks in you will NOT be able to look after them at home.
This is the stage where they may go from being absolutely OK with the idea of dying to looking at death the way a small child would. This is also the stage where you need to accept that they will not be mercifully taken before the disease takes every last vestige of their dignity because that only happens to other lucky bastards. But it’s also a stage where, at the start, you may not yet be certain where the disease will go. Not everyone gets shouty or starts telling nine year old girls they’d like to fuck them. But now is the time you have to accept and plan for the fact it may happen.
Stage five is the one where it ends. They end up in bed with people coming to turn them once in a while and spoon food into their mouths or in a home. This is the stage where Dad came back to us because suddenly, he got some sleep. By the end of his spell in hospital he genuinely could have come home to us. Except he couldn’t, because he’d have stopped sleeping again and it would have all been rinse and repeat. So he want to a really lovely home, but a home nonetheless. He knew where he was and more to the point, where he wasn’t.
The hardest thing is that, throughout all the stages, you will find vestiges of the person’s pre dementia personality. You will never lose your ability to love and value them as a person. You will never ‘get used to it’. It will never stop hurting. Even though there will be times when they say really horrible, hurtful things you will keep loving them.
I’m not looking forward to stages four and five with Mum, but at least I have more of an idea what to expect. Who knows, maybe the disease will be kinder to her than it was to Dad. I can hope, can’t I?