When I was about three years old, I was often looked after by my sister, then around sixteen. She would take me shopping, to the park and so on. We lived in Roehampton, South London. One day, when in the chemist, she let go of my leading rein while she fished in her purse for the right change. When she turned round, I was nowhere to be seen. She was frantic. A huge search ensued and eventually the police found me wandering along the mud flats at the side of the Thames in Putney. I don’t think my poor sister ever quite got over it, especially as Mother went potty. Every good parent will be able to relate to the panic this caused.
LITTLE ONES, SO VULNERABLE
A few days ago, I had a moment of terror when Leaf jumped a ditch with our dog, Monty, in tow and very nearly went oblivious into a busy road. I had just dropped him off to do a regular walk alongside a local lake. The lake was in sight, the road in the opposite direction. I wound down the car window and shouted at him to stop. He realised his mistake, grinned, jumped the ditch again and came back into the parking area before heading off in the right direction to the safety of the lake path.
I left to do the shopping and returned later to pick him up – I always make sure I’m waiting in the carpark for his return. I didn’t remind him of the incident but was still in a state. On the way home, I stopped at the chemist to pick up a calming remedy (all-natural, herbal pills). When he asked, I told Leaf what I was going in for and he said I simply had to get a hold of myself and relax, he was the one with the disintegrating brain! I was livid and hurt too but kept my mouth shut. Later we had it out, well sort of, he didn’t remember what he’d done and couldn’t understand my agitation. Looking back, I probably shouldn’t have brought the subject up.
LEAF AND MONTY OUT WALKING
This incident has brought home to me how like a small child oblivious to danger he is starting to become. Now more of a mother than a wife, I have to be aware of potential dangers – dementia sufferers are living life backwards , apparently at high speed and therefore becoming increasingly vulnerable.
I want Leaf to maintain as much autonomy as possible and, indeed, in many ways he is – intellectually he still seems more or less normal. However, on the practical, or common sense side, he’s frequently not aware of the hazards of everyday living. Also, his concentration is seriously impaired which is a result of a failing memory. To talk seriously to him, beyond the necessary snippets – ‘Do you want a cuppa?’, ‘Why not have a shower’ or ‘That coat needs a wash’ – I have to ask him to sit down and look me in the face. He finds that difficult and fidgets a lot or will even get up and leave the room. His attention is frequently taken up with fussing about one or other of the animals. I have almost given up trying to have a proper conversation with him.
But back to the potential dangers around the house and garden that could be the cause of serious accidents – particularly to someone with little or no concentration or bad ‘moment-to-moment’ memory:
VERY DANGEROUS IN THE WRONG HANDS
- sharp knives and other instruments
- the gas cooker and oven
- hot saucepans
- scalding water
- axes for chopping wood
- the circular saw for the big bits
- gas heaters
- paraffin heaters
- the wood-burning stove
- ladders
- sharp garden tools
- workshop tools
- electrics in general
- low beams (he hits his head frequently, particularly on the chimney breast)
- toxic liquids
LADDERS, VERY DODGY
There are others of course so, from now on, I will be constantly on guard. This may sound extreme but I have to accept that I can’t be too careful.
It is vitally important that we have to hand the necessary ‘tools’ to cope with accidents such as a serviced fire extinguisher, First Aid kit and a booklet on administering it and Rescue Remedy for shock. Obviously we need to have the number to call Emergency near the phone.
On the less serious but nonetheless annoying side, with a defective short-term memory, lids get left off, lights left on, doors and windows opened or shut when they should be the other way round. Items are used and never put back where they came from because he can’t remember where that was. Frequently they are left in unlikely places, especially the fridge, the wrong cupboard or the garden! Carers spend a lot of time looking for things, clearing up and putting away.
There are those who think that the house should be as stark as possible, clinically so almost – like a hospital room. Leaf and I disagree, the memorabilia that litters our place gives great pleasure to us both. Leaf loves to go through his treasures, books, letters, photos and records – they are the keys to who we are and, in his case, who he was.
MEMORABILIA
I’m in awe of those who cope with dementia on their own without a carer to help them get by until the later stages. By being forced to deal with memory loss, they have to develop strategies and aids that can keep them as safe and functional as possible. My heart goes out to them, they’re the ones who most need a hand to hold.
Comments
doodahtwo.home.blog 
ginnie says
Hey Sue
It’s hard to realise just how much the effects of the disease have had on Leaf and you during the times we see each other. Leaf seems amazingly like Leaf but obviously People who aren’t there all the time can’t see the day-to-day effects as you do. I hope you are coping ok. I can’t imagine how hard it is. My heart goes out to the two of you. Xxx
Thanks Ginnie for your supportive words. I find it hard to believe how strange he can be at times when, at others, he seems like his old self. We’re getting by and writing DOODAH certainly helps me.
I can understand the dilemma you must face, its hard to see a very clever and independent man be so unpredictable on certain levels and amazingly capable on other issues like politics or books, one has to be on guard all the time.
You’re so right K. He’s effectively two people, himself and the dreaded AD (Alzheimer’s Disease) who pops up more and more regularly. I did a post a while back about the invasion of AD.
Puuh! Sounds like you can only really relax when he is asleep. A growing burden. Hang on in there! Xxx
That’s true, Steve, although it’s okay when he’s doing a jigsaw or reading. However, when I ask him what he’s reading, he finds it difficult to tell me. xxx
Gosh Sue I feel for you both and admire you two too. Writing doodah is a brave thing to do and it is so informative. Brings a tear to my eye at times. Lots of love to you both xxx
Thank you Caroline. It brings tears to my eyes at times too. If you enjoy writing it tends to be your way of expressing yourself on all sorts of level. I find it very helpful to keep me researching for new ways of coping and if it helps others understand, that’s a big bonus.xxx
Beautifully written Sue, really felt the dilemmas you are facing. I can only imagine how wearing it must be .
Thanks for the compliment Jenny. I do try to work to follow my erstwhile writing teachings!!! With Doodah, I’m writing from the heart and that is so so important both for me and the readers. I do have to bite my tongue sometimes but am learning day-by-day to be more patient. After all I’m not dealing with Leaf, I’m dealing with his disease, so I mustn’t take it out on him.
Dear Sue. I am at the moment searching for photos of our childhood including Nigel and anyone else in the family. Cousin Judy got in touch to see if I have any that would help jog Nigs memory. Your blog gives us a real insight into how hard life is for you. Keep strong Sue. Sending love to you both. Jim and Annie xxxxphotos to follow.
You’re very kind Annie and Jim. These family photos are already giving much pleasure to Leaf/Nigel. He’s able to describe circumstances and we have a giggle at the fashions and so on. I believe it’s good for people to understand how living with Alzheimer’s, both for the carer and the sufferer, feels and will, I do hope, provide a helpful reference for those who are in the same position now or might be in the future. Sending our love back. xxxxx
Hi Sue
I’m glad you say writing your blogs helps you as I really enjoy reading them !
Us non carers really have no idea what life is like on a day to day basis for you and Leaf . Although it’s often sad reading parts of your blogs it’s very good to have our eyes opened and understand a little better .
I take my hat off to you and thank you
Thanks, Gail. When my first husband, Terry, had his car accident and became mentally and physically handicapped, I could find no literature about how to understand and deal with it. I looked everywhere, but only some very depressing leaflets from Headway, the Head Injuries Association gave me any inkling. That was back in 1987 when there was no Internet. Now we have this amazing tool and can communicate far and wide and connect with those who most need it as well as those who will find the information helpful for the future. How we’ve moved on!