Wonderful wonderful day

Warning. Don’t read this if you are about to eat or have a delicate constitution.

Dementia is shit. I mean sometimes it is simply that, shit. So this morning the upstairs toilet is covered in it. Looks like Dad just didn't get to the loo in time. This is when you regret having textured flooring so that it looks like wood!Cos the shit gets stuck in the grooves. Then it is on the cream carpet outside. Oops another bad design choice. What cleaning product to use on the carpet? I go for a good detergent and the loo brush. Then just when you think the loo is clean you find another load of shit down the side of it. And when you look at the light switch. More shit. There were also treads of a shoe in the shit. Find the shoe. More and more shit. Dementia is shit. But life isn't. We are lucky to have it. Most of what used to be my dad has left him and what he has been left with is shit. But we have to make the best of every day. This morning he does not want to get out of bed. I love you I say come and get up and have breakfast. No he says like a defiant toddler. So I play Wonderful Wonderful Day from Seven Brides for Seven Brothers really loud on my iPhone and leave it outside his room. He starts to get up.  It must be the lyrics I mean how could they fail "Ding dong, ding a ling long, were the steeple bells ever quite as gay".

It's Easy to Forget

Some of you may have read this before as I wrote it for United Against Dementia Week

When I was little my Dad used to sing to me "my little coquette". He calls me "dear" now. "Thank you dear" he says. Because he can't always remember my name. When dementia takes over a person it's easy to forget the people they once were. My Dad was a tough little boy who didn't have it easy as a youngster. Aged 11 he was in a Japanese internment camp in Burma where a soldier called him Taro which he told me meant Brave Boy. His father died in 1942 and his mother just after the war. 

He came to the UK and was lucky to meet my Ma. He was handsome, debonair and an aircraft fitter, with a voice like Frank Sinatra. He cooked fabulous curries, our friends used to queue up to come round ours on a Saturday night. He was always sentimental and used to cry at movies. One bath night Sing Something Simple was on the radio and a song came on that made him cry. We asked him why he was crying. He said it reminded him of his brother Buster who had died in a diving accident. 

When we were poorly he would go to town and come back with Lucozade and a present to cheer us up. I used to think he was trendy because he liked Simon and Garfunkel and watched Kubrick's A Clockwork Orange at the Hippodrome. He would stay up late at night as he was an insomniac watching Indian films on BBC2. He would carry both my brother and I up the stairs to bed at night. Me on the front and my brother on his back saying "up the wooden hill to Bedfordshire!" I can remember him having chilblains on his feet I guess from working on a cold factory floor. One day when it snowed he went out walking in the snow in the garden to relieve the itching. He did strange things like make a contraption out of hankies to keep his hair flat after he had washed it. 

He was clever with metalwork, made a trolley to help move heavy things, ornate wrought iron work for the stairs, and a tray for the bottom of my little brother's pram. He was always tinkering with cars and even replaced a few clutches in his time with the help of books from the library and mates from work. He had a temper on him and could get really angry with us if we were naughty. But I remember he would sit down with me in my bedroom and "discuss" my bad behaviour and what I could do to in future to put it right. He always wanted me to do well at school because he struggled having no schooling himself between the ages of 11 and 15 due to the war. He also wanted me to have a profession as he felt it was important for a woman to be independent. A very political person, he spent the 1980s shouting at the telly at Margaret Thatcher or Ronald Reagan as they appeared on the news. I remember when I told him I was leaving home to set up home with my boyfriend and he cried. How proud he was of us kids and all our achievements. I remember how much he loved my kids watching Red Dwarf with Rory or Barney the Purple Dinosaur with Tiffany. How proud he was when I received my degree from Cambridge aged 40! How beside himself with grief he was for myself and my children when I lost my husband aged just 48. He remembers none of this now.  

He has always enjoyed a flutter on the horses and can still walk to the bookies and put a bet on. But he does not know what he is betting on and he would walk there in his dressing gown and slippers with his hat on if we did not stop him. He cannot make a cup of tea or dress himself properly.  He will wake up in the middle of the night walk around the house and leave all the lights on, shout out, clap very loudly or sing "We'll Meet Again" very loudly. He'll open the doors to our bedrooms and say "what are you doing?" "We're sleeping Dad/Grandad" we reply. 

He will ask us who we are and what relationship we are to him. And then is upset because he is so sorry that he can't remember. It is difficult for us to remember who our loved ones with dementia once were when you live with the disease every day as it strips them of their personality. We had a lovely day the other Sunday. He sat in the garden with Ma and I asked Alexa to play some Frank Sinatra songs. She obliged as she always does. As I was cooking dinner I could see his feet tapping to the music. There are still traces of the old Jimmy left, Jimmy who took my mum to the Flamingo Club, or Maxine’s and sometimes to Ronnie Scott's to dance the night away in 1950s London. Jimmy who wrote love letters to Ma on the inside of flattened out Senior Service cigarette packs! I hope family and friends will join me united against Dementia for Jimmy and all those like him.

Who laughs wins

I say I say I say. My dad has dementia. It is not funny.  He is though. When he came downstairs one morning with just one sock on and was asked why, he looked down at his foot and said it's empty. Another time when he went to go out with different shoes on and was informed of the fact, he said they had argued. The other afternoon I touched the top of his head. I was worried that he may have a temperature as he felt so hot. I have been thinking a lot, was his reply. Strangely he can still find his way to the bookies in the town centre, a 10-minute walk away. Ma bumped into him as she was walking back from the market. Ah, she told him, we can walk back together. He smiled saying I don't pick up women in the street.

This week both he and Ma were in hospital in the same ward but in different bays  having both been struggling with chesty coughs, Ma probably due to the weak immune system leukaemia has left her with and Dad because his lungs are degenerating progressively, I think that's kind of how the doc put it. When we were told that he too would be admitted two days after his beloved Pamela he just said, it's becoming the fashion.

 We had been to the surgery when the GP said she wanted him to go to the ambulatory centre for tests at the hospital  straight away. It was 5 PM and we spent the evening sitting in high backed chairs  as they carried out a series of tests. I don't know whether it was because she was Asian, but as one doctor was writing notes after examining Dad he wanted to share with her something of his heritage. He told her proudly, I'm from Burma. She did not look up or respond. He said it again. She did look up then.  Pardon, she replied. I'm from Burma, he stated once more. Oh are you, she said and went back to her notes. No smiles, no engagement. I guess just too busy.

Finally after midnight he was admitted.  We were exhausted. Dad knew that Ma was in the ward.  But for some strange reason he thought that the elderly gentleman in the bed next door to the one that had been allocated was mummy.  He went up to the bed and bent over its occupant saying Pamela Pamela. He got such a fright  when the head covered in a mop of grey hair not dis-similar to Ma's turned towards him. This poor patient had severe dementia and just writhed in the bed with a stream of incomprehensible sounds coming from his mouth. His limbs were constantly moving and in the darkened ward with just a feint light from the corridor he did not look human. It was as if some creature was lying there. That's dementia for you. Not funny! Dad got very upset. I don't want to stay here, he's mad, please take me home, he said. We managed lto get him into bed and I told him I would stay until he fell asleep. Suddenly he became very sensible, lucid, my parent, the one in charge, who had the control. No you go home, get some sleep, I will be alright, he whispered.

 I went home and my son Rory was still awake bleary eyed. He'd cooked a delicious fish dish so even though not sensible to eat at this hour I tucked in and watched some rubbish on television while having a little weep at the thought of both parents in hospital.  I thought after what I should've done was watched some Dave Allen on YouTube, he always makes me laugh - the one about the bishops shoes – who got out of the wrong side of the bed this morning? A classic.

Dad was only in for 24 hours as they gave him oxygen as well as  steroids, anti biotics and something else I'm not sure what. Ma is still there in her usual good spirits, spreading her wonderful warmth and good humour.