Tuesday, April 29, 2008

Needful Things: Part 1!

I owe a huge debt of gratitude to the many people who have helped Mum and me as we stumble on. As time progresses, I've inevitably moved up the learning curve - but maddeningly, there is no central information service for dementia, and no directory as to who does what or even what you might be entitled in the way of help*.

Most of the time, I have operated on the premise that if you don't ask, you don't get. One day, when I have more time (laugh maniacally and collapse of stout party as Dickens would say!), I am determined to compile a directory - a sort of Filofax guide that could be personalised and updated - in the hope that it might just help others to take a few shortcuts - or afford another carer five precious minutes to come up for air. So just for starters, I thought I would try to compile a list of basic things that I have done, or found, in case it helps.. Many of them are just plain obvious but if anyone would like to contribute, please do. All suggestions are welcome!

Starter for 10. Here are Needful Things Part 1:

Early stage dementia
1. If you are trying to cope with the initial stages of dementia long distance (since that's where so many of us start), try to list as many useful phone numbers as possible before you need them eg. best friends, neighbours, GP, pharmacist, police, Community Psychiatric Nurse, locksmith, plumber, electrician, local gas board or utilities provider, local bank, solicitor (ours visited Mum in hospital when she was sectioned to draw up the initial PoA), named & tame taxi driver. If you have PoA, duplicates of appointments and documents can be sent to you. And neighbours are far more willing to help if they know that they are not going to be "lumbered" - so make sure too that they know how and where to contact you.

2. An A4 diary for public consumption that is kept in the house as a public reminder for appointments etc. is a huge help. List all the phone numbers in the front. If need be, put up a reminder of things to do before leaving the house on a pinboard - check doors, switch off oven/fire, remember keys. I also printed out "How to.." instructions for Mum for the oven, the washing machine and the tumbler which I stuck on the inside of cupboard doors. Shortly after that, we had to label the doors too so that she could remember where to put things. It took the fun out of hunting for them! but made life a lot easier. Luckily, Mum did not suffer from sticker-shock though I'm sure others might be a lot more sensitive about having labels peremptorily stuck on everything.

3. Leave a folder or box for correspondence. Or A4 envelopes, stamped and addressed to you, so that incomprehensible letters can be sent on. (Yes, I know it doesn't help when the envelope/folder is squirrelled away still working on that one...)

4. Set up the phone with single-digit dialling so that 1 = you, 2 = sister etc. Mum found it easier to remember pictures than numbers so I replaced the digits with pictures instead. It also helps to cut down on mis-dialled phone numbers etc.

5. Find out whether Tesco or Asda deliver - and if not, speak to the local supermarket/grocer to find out if they will. Or, if they will provide a "shopper" to help. In the early days, Mum would sometimes find herself in the middle of the shop and couldn't remember what she was doing or why. By the time, she got to checkout, she was already in a tizzy - and then she couldn't understand the money. Mum was discharged from hospital early and had no food - but the taxi company sent "our" driver to collect her - and because I had already been round to see them on a previous visit, he very kindly did some shopping for her and just put it on the bill which I paid. The taxi driver was brilliant - he ushered Mum on and off buses, carried her luggage for her, put on lights and heating in the house and made Mum a cup of tea. It was worth far more than the little extra that was charged. And the supermarket were more helpful that I had expected in assigning Mum a lady to help her shop. That was before Tesco home delivery - and though I offered to pay, they did it free of charge.

6. Getting to and from medical appointments. Loss of independence in getting around is a logistical mightmare. But many local surgeries offer voluntary drivers (either free of charge or for a nominal fee) to pick up and drive home. I didn't know about it - until I asked.

7. Tablets and prescriptions can be made up in dosette boxes (by days of the week x am x pm) and delivered to the door by pharmacists. It isn't a service that is advertised - but ask. Anything that makes life easier, right? It doesn't resolve the issue of taking the tablets not at all, or ten at a time...but that's another story.

* I ought to add that the Alzheimer's societies and associations produce a range of very helpful leaflets but I've still found that the best help has been word of mouth. I have to say that I started this journey more than 12 years ago and perhaps there is better guidance now than there was back then - so this is offered in the spirit of Polyanna's Pratical tips!

Monday, April 28, 2008


for my parents

i Alzheimer’s

Once she found a goldcrest’s nest,
tucked it carefully in a crook, made sure
the entrance was clear and open.

Recently the winds have blown it far
from the tree, are gently taking it apart.

ii Infarct

The last dominoes perch unsteadily.
The rest have fallen so that their black
sides are uppermost, the numbers
and the narrative mostly obscured.

(Published in Pendulum: the poetry of dreams, ed Deborah Gaye, Avalanche Books 2008)
Copyright Roselle Angwin 2007.

Reprinted here with kind permission from the author

Friday, April 25, 2008

Telling it like it is

Recent posts by other carers (Wits End & Alzheimer's Moments) have got me thinking. Which is great,because so often I find that I am so busy being busy like Rabbit, that I don't have time to stop and think. And the conundrum is this: what language do people with dementia speak? How do they tell us what they want to say, and how do we interpret it? And when all's said and done, given that most dementia contains an element of paranoia, is it credible?

This is one of the hardest things of all. There's no linguistic divining stick that will point you in the right direction. And dementia isn't like the Enigma - devilishly difficult but once you have the decoder, you're unlocked. It isn't a one size fits all. I guess the answer lies simply in knowing so well the person whom you are caring for, that eventually the verbal and non-verbal clues stack up.

Mum had and still has, latent paranoia. Ten years ago, it started with the central heating. Joan of Arc heard voices and Mum heard the central heating. We never quite decoded CH speak but it culminated with her being found in our village, wandering in her nightie. I was 500 miles away at the time but got a call from my father at about 3 in the morning, asking me to Sort It Out. Daddy had remarried and the divorce had been acrimonious.

When I eventually tracked Mum down via the police and the local hospital, she told me in whispered tones that I had to contact the Queen to beg for a stay of execution. It was just one of the funny episodes that we've been through with Mum. Funny with hindsight but deeply upsetting at the time. She was terribly alone, terribly scared and convinced that she was about to be executed. Luckily, she was in the care of an old-style nurse - a kindly soul blessed with great commonsense who knew exactly what it was all about. UTI. Hadn't heard of it at the time, but it now just trips off the tongue - Uterine Tract Infection. And it sends you very loopy, very, very quickly.

I've since learned that the elderly in general, and those with dementia in particular, are prone to UTIs. It's less to do with personal hygiene, and more to do with dehydration and not drinking enough to flush the toxins out of your system. (Cranberry juice is a helpful preventative but needs to be diluted with water to render it less acidic.) Often the remedy is very simple: a blast with antibiotics (watch the constipation!) and it's soon sorted.

So UTI is paranoia with a twist. But over time, I have also realised that just because clarity has long departed Mum's turn of phrase, that doesn't make her an unreliable witness. Last night when I visited her, I found her (unusually) unhappy. She was lying on a soiled sheet, in soiled clothes, half asleep. Not usual at all.

So I managed to coax her up, wheedle her into a shower and from there into some warm PJs and a freshly made bed. I even managed to dry her hair and cut her nails, a major achievement! Finally, she started to look a little happier and settled down to sleep. Her conversation had been a jumbled tale of being told off and being pushed in the cupboard. Nothing too alarming there - the tiredness that accompanies nightfall tends to exacerbate the latent paranoia. What was slightly different though, was that she looked hounded.

Dirty clothes and dirty sheets wouldn't worry Mum. She simply doesn't notice any more. But when I checked in the diary to see who had been in that night, it was a carer who finds dementia difficult. I don't know whether it's impatience, a lack of understanding or wilful misunderstanding. Or perhaps case overload. But she's the only carer to complain habitually that Mum is rude or stroppy. In response, I leave notes apologising and explaining that unfortunately, it is Mum's illness that makes her behave this way.

Not so long ago, another carer called me to say that Mum looked upset. She called because mostly (and thankfully), Mum is a cheery soul with rare flashes of irritation and frustration. On that occasion too, her previous caller had been the same carer who probably chastised Mum last night. Given that there could only have been 15 minutes max between my arrival and her departure (in fact, I arrived half way through her 30 minutes alloted visiting time), and given too, that Mum is no longer able to sprint from the conservatory and into bed - there is no doubt, in my mind, that Mum was already lying on the soiled sheets when the carer arrived. Yet the note in the diary read: "....sitting in the conservatory watching television. Not in a good mood. All well".

What can I do about it? Not a lot. There is a desperate shortage of caring carers and we are still struggling to get Direct Payments up and running. (Three "recruits" in our tentative care plan have had to withdraw before we even got started. All for very good reason, but it means our start-up has had to be postponed.)

The point is, that Mum is still able to communicate, even if it's a little unconventional or it's by non-verbal means. And she was probably right. Not about being shoved in a cupboard, but about being ticked off. Just because she has dementia, doesn't mean that she doesn't have anything worthwhile to say, or that she can't say it. Or that I shouldn't believe her.

A few years ago, when my father was diagnosed with a brain tumour, his speech was completely to pot. It was almost impossible to unravel the sense, but he was desperate to say something. And he cried. My father never cried. Like any family, we had been through the lot - blissfully happy times, sad and tortured times - and my father was always moved and affected - but he never cried. Until that night in the hospital.

Eventually, by repeating words and asking him to nod when I got it right, I gleaned that the night staff were uncaring and completely different from the day nurses. When my father asked for help to get to the bathroom, the night staff ignored him only to criticise and ridicule when he soiled the bed. It was the loss of dignity for himself and for the other patients in the ward, that made him cry. When I filed a complaint the next day, I was told that it was not the first and that action had already been taken.

So here's the thing: even if we don't understand, even if it doesn't seem possible or even probable, maybe sometimes they are telling it like it is. We just need to find another way to listen.

Tuesday, April 22, 2008

Perth & Kinross Leisure welcomes carers

Heads up to anyone in P & K who is a carer and who longs to get back to the gym or join in with "normal" life again - and who simply can't afford the membership fees anymore...

Last year, I spoke to our local leisure centre, about extending discounted memberships to non-qualifying carers like me. Because I work (sort of), I don't qualify for a Carer's Allowance. And because it would be inappropriate to drag Mum to the gym with me on a two for one deal, I also don't qualify. But I'm still a full-time carer and I desperately need some stress-busting time. I bike a lot, usually round to Mum's, because that's free and a) it's good for my bottom and b) I can't answer the phone on my bike. But living in Scotland, there are the odd days, of hail, sleat, wind and rain - and that's just in the summer. Nay, I jest - but sometimes the wind defeats me and it makes biking a Bad Thing. Which is when it would be lovely to nip down to the gym.

Anyway in October, the Leisure Centre reviewed and said no, but they promised to put it on the agenda for the AGM in April. Last month I wrote a gentle reminder - and true to their word, I received an e-mail yesterday to say that discounted memberships for carers had been approved and would be available from 1 July 2008. The criteria by which you apply for membership have yet to be agreed so it's not done and dusted yet but it's good news and I hope others too will be able to take advantage.

So faites attention mes enfants: look out for press, posters in June - scrunch and crunch, pecs, abs and buns to the ready!

Thursday, April 17, 2008

Have hair do, can boogie

Mum was in fine mood today, so I thought we might try an excursion to the hairdresser, something that I had abandoned about a year ago because of Mum's growing dislike of washing her hair or showering. In fact, the twice weekly shower is really the only time that she swears at me. The shower is an event dreaded by both of us, I think. Mum is accusatory: "I never thought a daughter of mine would ever treat me like this". I plead, wheedle and soothe, talk gibberish to distract, but nothing really works. Thankfully, once she is sitting on the bed, wrapped in warm towels, her truculence subsides and gives way to tiredness. And so I undertook the monthly haircut (!) honing my skills as I chopped. I learned to become bolder. Trimming minute amounts just made Mum's hair look like it had been chewed. But today, I thought we might venture, so venture we did.

What a success!! It took a while to mountaineer the steps, but we arrived in reasonable time and the hair salon had been forewarned. H, the owner, was in attendance and couldn't have been kinder. When Mum realised that her hair was being washed, her head kept bobbing up from the bowl like a chicken trying to peck corn. Water sprayed and soaked the floor but H was unperturbed, sweeping Mum toward a chair. "Your daughter's keeping an eye on us", he flirted. Perfect! That got Mum giggly and girly, and she patted H's bottom. "You'll be out dancing tonight," continued H. He laughed with her, and took great care to cut and dry her hair in a style that was "gamine" rather than the old lady rollers - which Mum always hated with a vengeance. She trilled and batted her eyes, and loved every minute of it. H said I was to call anytime, and he would look after her. And he meant it.

Isn't that brilliant? Back home, Mum gyrated to Trilok Gurtu. I'm inspired. Look in local phone book. B for belly-dancers. Wonder if we could book a private class at home?

Wednesday, April 16, 2008

Cloq watching

This isn't anything to do with dementia, but it has a spurious link through clock watching ...Just in case anyone else, like me, is waiting for bags to be delivered by Britiah Airways, I thought I would include Uniqlo's unique clock. (Click on the title to this post and you'll get there.) It's a strangely fascinating Jacques Tati style mix of ballet to Pearl & Dean music, comingled with screen wipes and web time. Love it - it's a "totally cool dude" moment in a Finding Nemo sort of way. I used to travel to Japan regularly and have a great affection for many things in that country, though never could quite get the hang of squid ice-cream.

Living in the provinces, I'm quite accustomed to BA's regular loss of luggage. At the last tally, it was approximately 8 out of 10 trips. Even my children are used to it. Just occasionally, BA score a double, as they did this time, and manage to lose my bags on both outbound and return legs! Irritatingly, when you tracker-check your luggage, BA's website shows them as 'delivered'. What they actually mean is, that the bags (allegedly) have reached the airport to which you were ticketed. Sorry BA, it doesn't compute. What delivered actually means for the rest of us, is that we have our bags in our sticky mits. No baby, no delivery.

But what has changed, is that even when your bags have been 'delivered' to the city where you land, it takes 2 days (and counting) to actually bring them to your door/room. BA says it's the courier. Hard to know what the courier says because they don't pick up the phone. (I guess they're too busy delivering.)

Still, I count myself a lot luckier than the hapless Hungarian who was due to catch a BA flight from Vancouver a couple of days ago. The flight was cancelled and the passengers herded off to a hotel for the night to be bus-ed down to Seattle the next day. The Seattle flight was delayed so we all missed onward connections. Except the Hungarian. He didn't have a visa for the States because he had never intended to go there. As far as I know he's still waiting at the Canadian/US border.

Hope he gets 'delivered' safely. Enjoy the cloq!

Sunday, April 13, 2008

Sleepless in Seattle

Seattle has been home for the last week, trying to focus on the conference and to mind the minders while I have been away.

This morning, I woke up to a txt from H2 asking for the home number of Mum's Monday-Friday private carer. Urgently. This being Sunday, it all seemed a little odd. But it's the same old issue. The Tena pants needed changing and I had forgotten that the respite carer had to leave a day earlier than anticipated. I had catered for the Morning Poo but forgotten completely about the Evening Poo. Pumping Mum full of good healthy porridge oats definitely has its downside....! But like everything, there is a funny side to it all. The changing of the Tena Pants has become something akin to the Changing of the Guard. Our day, Mum's and mine, is marked off by the hours at which the change is necessary. Too early - and there is little point. Too late, and in the morning, it could mean a whole bed strip and change. Only one of our regular carers can manage The Change, which means that I have to time my day and that of the children's by the times at which I must get round to Mum.

Paddy, our lovely old dog, had an endearing habit of looking completely surprised, when he farted. It happened increasingly as he got older. Eyes wide and full of indignation, he had no idea that he was the culprit. Funnily, Mum is the same. When we get to The Changing of the Pant, she points to the offender and demands to know, who is the perpetrator? Who had the audacity to put That There? I haven't the heart to explain and besides, an explanation would be pointless. So I also pretend to be shocked, and demur. "I have no idea, Mum" I say. "But you can be sure, that I'll ask them not to do it again".

A couple of years ago, I had thought that double incontinence would be my tipping point. This would be the time, that I would no longer be able to cope with the extra demands of personal care and laundry. But thanks to porridge, I can almost set my watch by Mum's digestive cycle - and we are still OK. How will I cope when I can no longer persuade her to get out of bed? Or perhaps, when her weakening leg muscles can no longer support her? Will that be our tipping point? I mention it, only because my fellow carer in New York has reached the point at which residential care for his mother looks like the only option. He is all cared out, sorely in need of rest and recuperation himself, and his Mum, unwittingly, is "playing up" which seems to be another all to0 common facet of dementia.

I can't work it out, but it's real enough. Mum uses emotional blackmail much less now - though we still have the odd day of childlike, attention-grabbing behaviour. But La Grande Pancake is peverse beyond measure! She longs to help - it's her self-affirmation that she can still manage - but you could stake money, that whatever you ask her to do, she will do the complete opposite. You almost wonder whether this is a weird trick of the brain that requires 'Alice Through the Looking Glass' speak: ie. you say the exact opposite of what you mean in a sort of verbal hamburger double flip.

I hope our NY carer gets the home that his mother (and he) deserve so that they can rediscover a relationship that has fun/love/affection as its base rather than the daily grind and worry of care.

Meanwhile, I discovered this week that Jimmy Hendrix was a Seattle son. He's a bit before my time, but I didn't know that. And I had no idea that aside from grunge, Seattle's roots are steeped in musical history. I like the city - it retains something of its pioneer feel and I love its diversity. Odd, though, that the skyline, at least near the waterfront, and the sprawl of the city immediately behind, is not peppered with church spires as in many European towns.

Fear not to entertain strangers, for in so doing, some may have entertained angels unaware