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!