If I’d made this up, no-one would believe me. #dementia

Today, back to real life, sort of, in so far as my life is often like a badly scripted sitcom. Here’s an example.

As you know because heaven knows, I bang on about it incessantly, I am pre-menopausal. Basically, I feel pregnant and teary the entire time, and I have no memory. The only difference is that there’s no baby in there, just a lot of hormonal chaos shitting with my mojo and everything else. I also have parents who live a long way away and have dementia. They are lovely but it’s hard watching them go through this, especially as it started in Dad around fourteen years ago. Sometimes I wish they weren’t around any more. Not because I want them to die but because I can’t bear to see them suffering and after fourteen years, suffering with them getting pretty tough too. It’s a long time to know something isn’t right, to be ready to rush to their aid if required. The last four or five years have been extremely tough and I guess there are days when I just want release from the sadness I carry. Then I think how much tougher it must be for them.

This week, I felt particularly weepy and daunted at the prospect of a visit. Dad had cried for an hour and a half straight the week before and I knew that if he was like that again it would tough. So believe it or not, I prayed on the way down, for something, anything, to take away the pain or give me strength. I know it’s just hormones shitting with my arse, but some days it’s as if I can feel myself crumbling around the edges and this was one of them.

Perhaps, in some form, my prayer was answered …

You see, the thing that probably saves us all is that they haven’t lost their sense of humour and neither have my brother and I. And when I think all is lost and that I can’t hold it together any more, a visit like this one happens.

This morning, I arrived just after eleven and pootled around, as we usually do, had a sherry and some crisps and the lovely day relief carer served lunch. Meanwhile the also lovely live in carer, on her break, went for a long walk. The door bell went and it was from a friend of my parents who lives up the road. He asked if Mum and Dad wanted to go to the old people’s tea party up at the church. It starts at three o’clock which is perfect for me because I go at half two and the ladies who run it do the lifts for folks who can’t get there under their own steam then, as well. As the friend leaves he goes completely the wrong way and tries to leave the house through the sitting room, I point him back the way he has come and he finally locates the back door.

A few minutes later, Friend’s wife rings to confirm. Lovely Live-in has gone for her walk but will be back at half two so we hatch a cunning plan; the lift will come for Mum, Dad and the carer and they will also take the wheelchair. That way, if Dad gets twitchy and starts shouting, loudly, that he’s ‘fucking bored’ Lovely Live-in can pop him in the wheelchair and take him home. All is well, we have a date and I can go home as soon as they are picked up. So we have lunch and relax. During the lunch we have a cyclical conversation revolving round my car numberplate and the numberplate of my grandfather’s car when Dad was still living at home and his first car. He also asks me his age a lot. He is amazed I know the answers, not knowing that I’ve learned them as he’s asked me each question seven or eight times already. His name’s John, so we call this the John-tastic trivia game. He loves asking me questions and is always chuffed if I know the answers. I tell him I can slay all-comers on John-tastic trivia and he tries to catch me out unaware that these difficult questions are ones I’ve just answered. Despite the repeated nature of it all, he is very much himself. I exchange knowing winks with Mum as the conversation progresses, we laugh a lot and have fun.

At two o’clock the old dears are resting after lunch and I’m just finishing the washing and drying up when the phone rings.

‘Hello, this is British Gas,’ says a computerised female voice. ‘Please press any button on your keypad now.’

Stuff that for a game of soldiers, I think, it might be scammers. They do this. They ring you and when you press the button you are put through to a £40 a minute premium rate line. So I wait to see if anything more happens. After a few seconds of silence the plastic lady pipes up a second time.

‘This is British Gas,’ she says again. ‘We are about to send your bill but we do not have a meter reading for you. Please send us your meter reading by the second of October or we will have to send an estimated bill. You can do this by phoning …’ she gives an 0800 number too quickly for me to write it down but I remember the web address, which I write down on a piece of paper. As an afterthought, I 1471 the call and it gives me the freephone number I didn’t catch.

Well, that’s pretty straightforward. I go outside to ‘the boiler house’, the cupboard by the back door where the boiler and the rest of all that gubbins is and read the meter. Then I remember that Mum and Dad pay through Scottish Power rather then British Gas so rather than muddy the waters I decide it would be wise to ring them, instead. Also, I realise that there is bound to be some snappy sixteen digit account number or other that I need to give as well. I check the filing cabinet, find their last bill and, sure enough, there is. So I write it down and in a moment of incredible sensibleness, the actual Scottish Power phone number as well.

The 0800 number is answered by a message which tells me it’s been changed but not what to.

Excellent.

Undaunted, I ring the Scottish Power number. That has been changed too but like the 0800 number it demurs from telling me what it’s actually been changed to. I return to the filing cabinet for another rummage and find another number for Scottish Power. Good, here we go. I ring that and find that has also been changed and once again, helpfully, there is no mention of the new number.

Blow me down. They don’t want to be disturbed do they? I think.

A bit perplexed now, I attach my phone to Mum and Dad’s wi-fi because their house is dead to O2 and pretty much every other mobile operator barring Vodafone which I was with before, which does have a signal on certain special occasions. I dunno, when the stars align, the wind comes from the east and there’s n R in the month or something. I google Scottish Power’s contact details. When I ring the number given, this, too, has been changed but it does give me an alternative number. Marvellous. So I ring the alternative number, enter my parents’ account number followed by the meter reading and Bob’s your uncle! Done. And that’s when the trouble starts. The plastic lady, because this is still an automated thing, tells me the leccy bill is due too, explains that there is no meter reading for their electricity either and asks if I’d like to give that while I’m phoning.

Would I?! Two in one hit! I think, Bonanza! so I say yes and amazingly it understands my voice. I am in the study as I do this, so I nip back through towards the front door, at which point the alarm goes off that says Dad has got out of his chair. I meet him in the hall.

‘Hello Dad, fancy seeing you here.’
‘Yes.’
‘I’ll get the bottle.’
‘No. I don’t need a wee.’
‘I see.’
He looks thoughtful and then gives me a twinkly-eyed smile. ‘Actually, do you know, I can’t quite remember why I’m here.’
‘That’s OK, but you should probably sit back down for a bit because I’m just on the phone and your lift isn’t due for another fifteen minutes.’
‘Alright darling,’ he says.

So off he goes.

Glad that it’s a freephone number I now head out to the boiler house and discover that I’m too sodding blind to read the electricity meter, but there’s a stepladder in there so I climb up a bit and by sticking my nose up close and taking my glasses off I am able to read it. But the electricity meter reading isn’t so simple. The plastic lady informs me that there will be two readings, a day reading and a night reading. I look at the meter. There’s one number. Definitely one number.

‘If you are having any difficulty say, “Help.”‘ the plastic lady informs me.
‘Help,’ I say.

Then she explains that the electric meters have a button and the day reading, which will start with a higher number, will be Rate 1 while the night reading, which is Rate 2, will start with a lower number. Excellent, she is correct. I start with Rate 1, the day reading, and the plastic lady says that it is unusually low am I sure? ‘Yes,’ I say. She’s so aghast she asks again. I confirm. Then we move onto Rate 2. The plastic lady thinks it’s unusually high …

Oh oh, I think. I stop climb up the steps and recheck the numbers and rates. Yes, I’ve definitely written them down right.

Balls. Looks like it might be wired in the wrong way round.

I ring off, head back into the house where ring the number again, this time choosing the option to speak to a human. Fool that I am, I admit that I’m not Mum but her next of kin. Oh, he says, we will have to authorise you then.

Fucking fuck. I think.

At that point, Dad’s I’ve-got-up alarm goes off again and he comes zimmering into the hall.

‘Hi Dad, won’t be a minute, just have to give the phone to Mum.’
‘I need to pee,’ he explains, quite loudly enough for the poor bloke from Scottish Power to hear down the telephone I am holding.
‘Oh lord, sorry, be with you in a minute then. I have to help my Dad to the loo,’ I explain to the guy, ‘Let me hand you over so you can do the bit with Mum.’

Dad and I go to the loo which is next to my parents’ front door. All is fine but he is having trouble weeing. I know that when he can’t go, the carer whistles. So I suggest I do. He thinks that’s a capital plan and because it makes the situation just that little bit more Python than it already is, and because I know it’ll make him laugh, I start whistling the Dambusters March. At which point, the doorbell goes and Mum, who has followed us, manages to intercept the lady giving them a lift to the tea party just in time before she walks into the hall and sees the loo door open and me holding Dad’s cock in a bottle while whistling the Dambusters March for all I’m worth. But of course, Mum also has the phone, with the man from Scottish Power still on the end, and tries to give it back to me.

‘Hang on, just let me pull Dad’s pants up,’ I say cheerfully because there’s no coming back from this now and the man has probably called for the padded van already. Then I get Dad going on his way back to his chair, empty the bottle, wash my hands and take the phone back. Dad is a bit unsure where he is going or what he’s doing so I usher him gently in the direction of the drawing room to sit down out of the way for a moment. But the guy hasn’t finished. He needs Mum to confirm her date of birth and then two lines in their address and then he has to read her some legalese.

‘J….. Ch…! You must be kidding!’ I say and then apologise for swearing. ‘Mum,’ I say.
‘Oh Lord does he want me again?’ asks Mum.

Mum gives her address and date of birth as instructed and then hands it back to me.

‘No wait,’ the man says, as soon as I get the phone back, ‘I have to read her something.’
‘Oops, sorry hang on,’ I say and give the phone back to Mum.

Legalese listened to, she hands it back to me,  at which point Dad leans in.

‘You’re not still on the phone are you? Who is it? I want to go out! Tell them to bugger off.’ Well, I console myself, at least he didn’t say ‘fuck’.
‘No Dad, I can’t, he’s trying to help us,’ I explain.

Apologising profusely to the man form Scottish Power who is doing manful work stifling his laugher, I move away into the relative safety of the study. The man suggests that we all go out for two hours, leave something running and have a look to see which of the numbers has gone up when we get back. I explain that I won’t be there and they are not capable but that I’ll do it next week. He is a sweetheart, especially after what he’s been through, and says that’s grand. He also explains that he’s given a permanent third party access on the account so I can ring up and sort stuff as myself rather than by pretending to be Mum. I think him profusely and we say goodbye.

Then it’s time to leave and I’m finally able to actually ask Lovely live-in, who has just arrived back, if she minds going with them and wheeling Dad back if he gets bored before Mum does. Bless her heart, despite going for an hour and a half power walk with ankle weights on over her break, she agrees.

By this time it’s quarter to three and I should have left fifteen minutes ago but the car that is giving Mum and Dad a lift is blocking the drive and I can’t leave until it moves without driving over the lawn. But then the three of them, and the wheelchair, won’t fit in the car. So I realise I will have to run the wheelchair up there in my car, but it only fits with the roof that side rolled up. Luckily it’s only a mile or so on village roads. I say good bye and get in my car, at which point Dad, who has already forgotten that I’ve said goodbye, shouts that I haven’t said goodbye, so I get back out of the car and say goodbye because he’s forgotten. I then realise I have to go now, right this minute, because the others aren’t going to and if I don’t he’ll forget again and I’ll be getting in and out of my car to say goodbye to him, probably all day. So I wave cheerily at them all and with a round of see you next week’s I do indeed drive over the lawn. In my lotus. And up to the church where I deliver the wheelchair. I am finally on the road just before three, and also, to my delight, just in front of a tractor.

If anyone put that in a sitcom, or as a sketch in Little Britain, people would say it was over the top and unauthentic. Hmm … welcome to my unrealistically hammy comedy life.

Mum and Dad’s wedding photo. Check out the hands. They’re hanging onto one another like they never want to let go. They still love each other as much, even now.

_____________________________________________

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21 Comments

Filed under General Wittering

21 responses to “If I’d made this up, no-one would believe me. #dementia

  1. What a day! The photo is absolutely heart achingly beautiful.

  2. You, my girl, are a wonderful storyteller. I was right there with you — except, perhaps, in the loo. I sure hope this is part of a book, or a screenplay.

    • Thank you. That’s pretty high praise coming from you! 😉 This isn’t part of anything yet but I’m thinking, more and more, that it should be. Not sure if I could keep the ideas going long enough to write a sitcom, which is probably what I’d have to do with it but it is a thought. All I’d have to do is have the ‘me’ character discover that the numbers on the meter were the right way around and I’d muddled them up and we’d have a pilot episode.

  3. They can’t cure dementia, but they have Viagra. What a compromise of principles. And while I’m ranting, I’ve had ME/CFS for 27 years now – what on Earth are they waiting for, the medical research people?

    • Tell me about it. Then again, they have discovered that ultrasound reverses Alzheimer’s in mice, in Australia. So only another 20 years to go then … It will be too late for me. Anyway, knowing my luck I’ll have vascular dementia which is the same but completely incurable. And why is stem cell regeneration of cartilage always exactly 20 years behind the deterioration of mine.

      Cheers

      MTM

      • Lynne Jones

        I am impressed by your ability to be so cheerful. My Mum has vascular dementia that I might have mentioned to you in an email. You’re lucky to have a considerate person on the phone. My cousin had problems with transferring her Sky account when her husband died. They said she should have given them notice and asked for his logon and password. She swore at the woman and hung up.

      • Bless you, yes you did I think. My folks have always loved to laugh and that does help. Its as if they are aiming to fill their time with as much joy and humour as they can before they forget how. It doesn’t always work. Sometimes their hearts are too full and they are too sad but mostly they are ok. The care team are ace too and almost love mum and dad as much as I do. That also helps and they have enough life savings to pay for their care for now which is also a blessing.

  4. Diana

    Oh, I hope this becomes a comedy routine somewhere along the way. You had better start recalling other stories, too, so that once the pilot flies you have others to call upon. (perhaps collect stories from other families if you run out of your own?)

    14 years of this is a long time. May the remaining time be filled with many more of these lovely stories, and not so many of the other sort. Dementia can be tough. You seem to be handling the challenges very well. Thank God for good carers — and for parents that allow them to do the caring!

  5. Liz

    Brilliant, as ever, just wish that there was a way for the Scottish Power Man to read this and understand what was going on that day – ever thought of contacting the relevant charities, see whether they want your material for any campaigns they’re running? The British often seem to get hold of notions better through comedy than any other medium ……

    • Thanks. Funny you should say that, I have been wondering whether to contact one of them and ask. I’ll write some more first maybe but yes you’re right about speaking to British folks.

      Will have to have a think.

      Cheers

      MTM

  6. Oh my, you are a saint . . . and a wonderful storyteller! I feel for you and your parents. I went through some tough times when my mom and dad were doing downhill, though not with dementia. They both had cancer, no even mildly funny tales about that, I’m afraid. But I totally understand your feelings of not wanting to watch your dear parents suffer any longer, as well as yourself. That’s very normal, at least in my humble opinion. Hang in there, my friend. You will be glad you did.

  7. we should get together and write a script! Love this and hope you might also enjoy some of my mum’s conversations too. soniasmum.com All the best, Sonia

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