Tag Archives: dementia

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.

_____________________________________________

On a lighter note, the lovely people at Kobo are doing a box set sale and mine is in. Basically all you do is enter this code, 30SEPT at checkout and you’ll get the whole K’Barthan Series for 30% less than usual.

At the moment it’s definitely running on Kobo UK, Canada and US and AU as well, I believe. So if you’re a Kobo user and you’re interested in picking up a bargain, click these lovely links here and enter the code at checkout:

Kobo US

Kobo Canada

Kobo Australia

Kobo GB

 

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MTM’s Epiphany epiphany – or the Wenlock Edge Moment

I love the New Year. Christmas is over and I am home free. You know how, if you let a bee out of the window it flies miles up into the air as if it’s delighted to have escaped.* Well, yeh, I feel like that.

* Obviously, it isn’t delighted to have escaped. It’s a bee. It’s actually going up there to orientate itself and find its way back to its hive but there’s no harm in a little Victorian-style anthropomorphising of animals every now and again if it’s sensibly done. Phnark.

Anyway, where was I? Yeh. Today, it being Sunday, and the feast of Epiphany (when the 3 kings arrive) I went to Church. I confess, I like church. Maybe it’s because, as a classically trained musician, few things appeal to me more than singing loud shouty songs in a situation where nobody can be rude about my horribly loud corn craik like voice (because that would be unchristian! Snortle.). It’s also quite mantra like, doing the same thing again and again. And it’s calm. Church is where I get time to reset my head.

sunlightinchurch1

This week, I was mulling over my life this last year. I think I can safely say that 2016 has been pretty grim for me personally. Famous people dying didn’t even hit my radar, even the racism and bigotry round Trump and the Brexit campaign was eclipsed by personal events; my Mum beginning to lose her memory, discovering that Dad has alzheimer’s and that he was diagnosed FIVE YEARS AGO! But they didn’t see fit to tell us until September, thereby denying us so many options, things that might have made it easier, or given us a year or two extra with him, the whole of him.

Then there was having to do three mercy dashes when Mum went into hospital. Organising 24 hour care, sorting out enduring power of attorney over my Dad’s side of their joint account so I can help her with the finances, making the 280 mile round trip every Wednesday. Having to let go a succession of very lovely 24 hour carers for no other reason than Mum didn’t like having them there and I needed to show her she could trust me, that I was listening to her concerns. Helping her to gradually adjust and accept them … watching her deteriorate and then rally. That one glorious visit when she was better than I’d seen her for two years a few days before she got really sick. Watching her lose the power of speech, twice. Sitting in hospital with her the second time, wondering if she was going to die, knowing she wouldn’t want to without regaining enough speech to actually say goodbye. Visiting her and finding the hospital deacon there and Mum, still unable to talk, silently crying. Knowing that every bit of sadness I feel about her and Dad is felt to the power of hundreds more by her, because he’s her husband and she thinks that if she dies before he does she has failed him.

Watching Dad deteriorate. Trying to be a jolly, kindly mother to my boy and wife to McOther. Trying to see the good stuff in my life – which is there in abundance, by the way – on the days when the parents thing is just too much and I want to crawl away and cry.

If I’m honest, it’s been fucking awful. And it’s not going to get any better but I think that, maybe, I will.

Today, in church, I had a bit of a … well … epiphany – very apposite on the feast of Epiphany – what I would personally call, a Wenlock Edge moment.

Wenlock Edge is a poem by A E Houseman. It’s a belter if you’re down. Basically, he’s watching a gale blow across the trees on the side of a hill but that’s just the surface. There’s also some kind of upheaval going on in his life and he feels torn and battered like the trees. And he looks at them and realises that people will have been able to stand where he is standing and see pretty much the same view for thousands of years. He speculates that some of them must have been in the same, or similar, doo-doo to him but they, and their troubles, are long gone and he will be over his troubles one day, too. It’s very much an, ‘and this, too, shall pass,’ kind of vibe and very good.

So there we were in church, singing a carol called, A great and mighty wonder which I love because it’s early music and I love the way they mess about with syncopation and speech-like rhythms. And as I said, I love music and I love to sing. I noticed that the tune was arranged by someone who lived from 1572 until 16 something. This is another thing I love about early music, of course. When you’re standing (or sitting) singing a tune that’s over 500 years old, or, as in the case of another one this morning, a new tune with words that are over 1,500 years old it’s kind of cool. And there are so many. The oldest I know of, of the top of my head, is Of The Father’s Heart Begotten. Words: 4th century, music: 11th (rearranged obviously). Now that is fucking old.

Anyway, back to the carol. I’m singing it and it makes me think how many millions of people, all over the world, have sung this tune before me during the last 500 years. I wonder who they all were, and if any of them were sad about the things I’m sad about, and then I realise that of course some were, because with that many people, it’s a given.

And that’s the Wenlock Edge moment. Or at least, that’s the way I do it. And that’s the realisation where everything changes.

That’s the moment when the lense through which I view my life suddenly pans out.

That’s the moment when you are hovering at ceiling height in the office block of your being, looking down on the cube farm of your existence and seeing more than just the bubble of emotion you are sat in.

That’s the second when you see all the other colours in your life and how they shimmer and glow and interconnect. And that, for me, is usually the moment when I suddenly realise that everything is OK. Or in this case, that I’ve achieved a lot more than I thought. That I’m stronger than I realised. I’ve done alright.

And it feels affirming, uplifting.

Actually, it feels marvellous!

Because this time last year, I was worried sick. I’d spent Christmas with my parents, my Mum was getting forgetful and was not very well, her friends and the lovely peps who help her garden, help her clean the house, and who come in and look after Dad. All of them were worried. I was worried. Mum and Dad weren’t safe on their own. The long process of persuading them they needed live in care began.

And I remembered that and I contrasted it with the way I feel now.

And it was surprisingly better!

OK, so watching people you love die the death of a thousand tiny mental cuts … over a period of 8 years and counting … is not a process I recommend for the maintenance of a 24 hour joyous disposition. Yes, there is still the sadness and there is still the pressure. So much to do, not much time to do it in, the requirement to make weekly visits and be a nice mother and wife and funny and good company when I’m actually rather sad a lot of the time. Then there’s the making sure that there is room for grief but that it doesn’t become a habit.

Amazingly, what I realise is that I’m coping. I love and am loved. And there are still good times too. And for all my banging on about looking back on things regularly in my writing, about making sure I realise how much progress I’ve made, about how we should all do that, in this crucial personal thing, I haven’t. I haven’t done it in my writing either.

Doh. Channelling Homer.

Achievements for 2016 then. My parents are in their own home where they want to be. They are warm, cared for and looked after by a bunch of folks who love them almost as much as my brother and I do. They are as happy as their circumstances will allow. They are supported and safe. And me, I’m as happy as I can be that I’ve done right by them, done for them what I’d want people to do for me, made it possible for them to live the way they want, where they want, for as long as they are able.

I’ve done what I can. And suddenly, in today’s Epiphany epiphany, my Wenlock Edge moment, I realised that I’ve done enough: enough to ensure I can live with, and like, myself as a person. I’ve done OK by them. And I’ve done OK by me because even through all the chaos I’m still writing. I’ve been Mummy and Dutiful Daughter but I’ve also, just, clung onto Mary.

And I hadn’t realised that until this morning.

And it feels good.

Happy New Year peps.

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Book stuff supplemental:

There’s a humorous science fiction fantasy authors giveaway running until Tuesday, I think it is. You can win $42 cash equivalent or gift voucher, a box set of the Hitch Hiker’s Guide and paperback books from five humorous sci-fi fantasy authors. One of them is me. You can find that, and enter if you like here.

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