When dyslexic people try to fill in forms … #dementia

This week, a cry for sympathy rather than help, hopefully, in a way that is amusing or useful to you.

Last night, McOther and I were invited to a Christmas party. We went. He from London, me from here. I met him there. I was late because our babysitter couldn’t get here before 7.00pm – although I had only just hopped out of the shower when she arrived. This year, the babysitter had not had a car accident, McOther was not in the middle of some stupid deal and it all went off without a hitch. Until we drove home at which point we found a sign announcing that the road would be closed at the next junction. So we ended up having an interesting adventure driving around the Suffolk countryside on muddy single track roads, in the middle of the night, at temperatures of about four below so the mud was mostly ice.

This is the story of my life right now.

Nothing is quite going to plan.

It’s not that things are going badly, or over complicated even, just that they are consistently arse-about-face. The simple things complicated and the complicated things … nope they’re still complicated. It’s not all hand of God like that one though. A lot of the cock ups are my fault.

Obviously with Christmas looming I’d expect things to be going slightly wrong, but this year, even November, which is usually a nice quiet month, got complicated. It all started about ten days in, as I was cresting a very creditable 25k in the first ten days of NanoWriMo. My brother phoned in a panic because the accountant who does Mum’s tax return had been onto him telling him that he must do this that and the other, and suggesting we remove all Mum and Dad’s remaining estate from stocks and shares and into a high interest account. It sounded barking to me but what do I know? Luckily after a few phone calls to check the situation, and a consultation with McOther who understands banking and shizz in a way I don’t, it was all sorted out but it took several days.

At the same time, my brother raised a second thing; that we need to have a properly legal power of attorney over Mum and Dad’s health – yes my lovely peps a Do Not Resuscitate form is not enough, why, I do not know but it seems they have to express this intention formally, using a living will or a special government form. The form is massive and it has to be witnessed, counter witnessed, another independent person has to sign to say Mum and Dad are not being coerced and they all have to do this in front of one another. The form has to be signed in a certain order, or it’s void and when it’s done it costs £110 to file each form, which you don’t get back if you fuck it up and you have to pay again to resubmit, although they will let you resubmit it a second time for half the fee.

To complicate things Mum and Dad’s DNR was signed three or four years ago and the legal stuff must be organised while Mum and Dad are still capable of stating their intentions about this or we would have to make them wards of court or something horrifically complicated. Mum is fine but I wasn’t sure about Dad. I knew I’d have to get the forms filled in and ready to discuss by Wednesday so I could go through them with him when I visited.

Having taken this all in, it occurred to me that I had pissed several days of Nano to the four winds but I had written the middle week of Nano off anyway, because Mum’s birthday is on 18th November and she isn’t really able to organise things like a cake, day out etc for herself so some of that, notably the cake for 15 people, would fall to me. We were all going to have lunch with her at the pub on the Saturday. Likelihood of both attorneys, both deputy attorneys, Mum and Dad in a compos state and enough hangers on about to witness the thing being in the same room in the same place again within another year, low. And, as I said, the middle week of November was already shot writing-wise so I decided I may as well lob the form filling into the mix. Along with the cake.

Finding the forms online was reasonably straightforward and I printed them out and set about filling in the obvious bits. After cock ups galore, I ran out and when I came to print some more I discovered that the latest Windows update had some issue with older printers so I couldn’t print them. So I rang and got them to send me two copies. Thanks Microsoft, I have a computer that won’t save anything to the remote hard drive I bought for it after the last upgrade and which can’t print anything in less than half an hour after this one. Way to go. Yes if I had world enough and time, I am sure I could browse our help fora, as you very reasonably point out, because I’ve nothing better to do with my available time than spend a couple of weeks of it fixing my computer so the drive is useable and its 64bit operating system is, once again, able to talk to a 34 bit printer. I could. But unfortunately, you total and utter bastards, I have a life.

After the helpful intervention from Microsoft I sent the forms to my parents’ email address and on the next Wednesday, I visited Mum and Dad, printed out several copies and set about filling them in. I must state, at this point, that while the forms, themselves, are a nightmare, the government helpline to assist you is staffed by wonderful people who answered my numerous questions about the bleedin’ obvious with politeness and endless patience.

Naturally, since it’s a government form, and you have to have about ten people in the room at once to sign it, two of whom have dementia, plus three children ranging in age from seven to nine who are a bit bored. Distractions are everywhere and opportunities to fuck it up are legion. Add in that the person ‘organising’ it all, the ‘sensible one’ in my family is pathologically unable to fill in any form without fucking it up at least three times and you have a recipe for disaster. I had seven copies of each page. I used every. single. one.

Indeed I had to print an extra one to redo when I discovered that if I so much as scratched out a letter Mum and Dad, the two attorneys and the two deputy attorneys all had to initial them.

Meanwhile, a family tragedy overtook two of the carers on the morning, which meant the cake for fifteen which I had made and McMini had helped me ice was somewhat redundant. It also meant that I was going to have to arrange lifts to the legion of appointments with the nurse, hospital, dentist etc that Mum had over the following two weeks while they were on compassionate leave. Obviously, dear Mum did just enough to make it really complicated, organising lifts, then forgetting, or asking me to and forgetting and then organising them so we found two doughty folks had stepped up to help. But we got it sorted. Just! And it could have been so much worse, because the other two carers stepped into the breech and were wonderful while the other ladies were on compassionate leave. We still had a good day on the birthday, Mum called it her ‘best birthday ever’ even if a cake for fifteen was a little more than was required … and I got the forms signed …

… Except I didn’t.

Oh no.

Dick brain here managed to miss the page where the attorneys have to sign and so I had buy two hard backed envelopes so I could send those to my brother to sign – with the second envelope stamped and self addressed inside (he lives further from a post office than I do). I left them to ‘rest’ for a week while he was doing that, on the pretence this would make me more efficient when I checked them but really, just to see if I could jemmy in the last few days of Nano.

This week, there was a panic about Christmas, who would make the cake? Not me!  Yippeee! Who would order the turkey, Mum hadn’t, I did, just in time. Phew.

And then yesterday, back to the forms. One round of final checks as I was getting them ready to post and I realised one of the other pages my brother signed had managed to slip through without a witness signature.

Head desk.

Another joy of having a form of dyslexia, you only seem to see these things one at a time, so you check and find a mistake, rectify it, check, find another and so on. I just hope I cease to find mistakes eventually, except, when I cease to find them, it won’t necessarily mean that there are none.

Anyhooo … The lady who had signed as a witness isn’t one I routinely see on a Wednesday. Would I have to arrange a special meet? I rang the government helpline and was told no it could be someone different. So now, on Wednesday, the lovely carer on duty is going to sign as witness.

At the same time, I was working on the other form my brother mentioned, the thing where Dad gets a community charge reduction. Turns out I’d filled that in and sent it to the Doctor to certify at some stage AND COMPLETELY FORGOTTEN! Help me God! How? I found out when he popped round to see us on Wednesday with it and while it was a lovely surprise to discover I’d been so efficient it was a bit of a shock to have completely erased such a land mark event from my memory.

Form for Dad was signed, I’d done one for Mum on the off chance but Mum has no diagnosis for her memory gaps and isn’t really mentally prepared for the news, if we are to get her one, so I can’t get a reduction for her but I can get one for Dad. So yesterday, having discovered I’d bollocksed the Lasting Power of Attorney for Health forms I turned to the Community Charge Disregard for Dad, called a ‘disregard’ because they disregard that person when totting up the bill, except they only disregard 25% of him but I’m not complaining because it’s a sod of a lot better than refusing to disregard him at all, sorry where was I? Oh yeh.

There are two parts to the form, a bit the doctor filled in and another bit which I fill in. Needless to say, I ballsed it up. Manfully I print one. After twenty minutes of printing enough of it has come out for me to discover it’s auto set for landscape.

The form is portrait.

Swearing colourfully, I cancel the print job and after waiting ten minutes for the printer and computer to sort that out with one another, I check the ‘portrait’ box and set it to print again. I leave it and sort the washing into darks and lights, change the sheets on the beds and come back to find it’s printed a quarter of a page. I go and make a spag bol for half an hour and discover it’s now half done. Then it occurs to me I have no address to send it to so I ring the council to ask, they ask me for my account reference, I say I don’t know it and ask for the address which the lady thinks is on the form but she’s kind enough to give it to me anyway. As I write it down, I hear the sound of the printer spitting out the completed sheet. I look at the form. It is set out as a table with shaded headers for each bit. At the top, above the table is a tiny bit of type which I only notice now that the woman has asked me for it. ‘Account Ref’ it says.

Fucking shit.

Do I have the account reference number? Do I bollocks?

But wait! I can look at the bank statement, it will be on there won’t it? I spend five minutes getting into the account with the special secret code that you get by putting a different password into to your phone and have to type in before it expires and it’s numbers and you have discalculia so you have to do it twice and it forgets all the other answers you’ve typed on the page because you got the one wrong so you have to type them all back in and then the new passcode has expired so you have to go back to your phone and do the other password again and so on.

I get in. Is the ref number there?

No.

Arse.

Second job for Wednesday, find the knobwanking reference number.

Here’s hoping that when I check these bastard forms next time, they will all be in order.

At the end of it all, Mum, my brother and my sister in-law sat me down and told me I must pay myself for the stuff I do for Mum and Dad. So now I’m earning one day’s ‘consultancy’ a week from them, which is what I’d be doing if I was efficient.

On top of that upside, what of Nano? Well, I did 35,000 words in less than half of November. OK so that isn’t a ‘win’ but in the number of days in which I was actually doing writing, that is a gargantuan result. And, it shows that:

1. The Joe Nassis method of planning a bit, even if you don’t normally plan, on line seminar I went to and took copious notes about does actually work for me.
2. That if I can make time to write, any time at all, and structure it properly, I’m fucking productive!
3. There will be a novel out next year.

Woot.

Finally, a note on powers of attorney or planning generally. My parents sorted out enduring power of attorney forms in 2004 so that if anything happened we could take care of their finances smoothly. At that time health was usually implied, certainly in the way the homes and hospitals my grandparents ended up in consulted my parents over their wishes in regard to treatment. As I said last week, I remember talking to my Mum after the home where my Grandmother was had asked her whether they should aim to cure my grandmother of pneumonia or make her comfortable. These days she would need to be officially and legally entitled to make that decision for my Grandmother and likewise, I need to be, to make decisions like that for her and Dad. Best laid plans of mice and Mum and Dad etc. You can plan but even when you do, you have to accept that laws change, the landscape alters and things move on.

Also, if you’re doing these forms for finances it is worth consulting the bank. Despite having power of attorney over my Dad’s affairs, I am not allowed a bank card for him, so it’s worse than useless when it comes to the day to day matter of trying to buy things or get cash out for my parents, etc, etc. Luckily, they have a joint account and it is a key reason why we haven’t activated Mum’s; because she needs cash, and she’s two to three hours away by car, so the ability for her, or her carers, to get to a cashpoint themselves, or pay for things by card in a shop is very important. I am certified by the bank to do telephone and internet banking now, which helps a lot. So I keep an eye on her bank account, pay the wages and liaise with their stock broker when they need more cash. It works very well, and I consult Mum each week about what she’s paying and to whom, but it’s definitely a compromise and I’m not 100% sure if our method is exactly by the book.

After all this, the other day, McMini with his somewhat gappy smile, grinned at me and then, pointing to the large empty space where his new front tooth will grow said, ‘Look Mummy! My gums are bald.’

And so it continues …