Thursday, December 19, 2013
My dementia coping strategies - out, people, entertainment.
It haunts me.
It follows me wherever I go, wrapping its nasty fingers around my very being.
Dementia is always there, waiting to pounce.
It is unpredictable.
This has not been a good day.... nor in fact was yesterday.
I keep trying to fill my life in the hope that I can escape it - but nothing masks it at its worst.
Huh? call this the worst, Paula?
And we have filled the days......I have enjoyed some memorable things.
But for Bill they cannot be memorable, there is no memory.
Yesterday I dragged him into town. I needed shopping and I thought he would enjoy eating out.
The green stuff (rocket on the side) and that wonderful looking red garnish is handed to me.
Leaves seem to be alien to Bill's world.
That's egg benedict La Rusta style.
Maybe I would do best to leave him with his bowl of cornflakes.
But I am used to company and it is always a shock to the system to remember that although I have a person with me, it is not the man I knew.
We also called on an old friend. Tony Killick is an 80 year old, old friend. Old and frail, but still the man we have known for 50 years and much more.
We must go back soon - he so wants to share his world with us.
Tony's world is the culmination of 80 years of hunting and hording.
Anything connected with bikes, steam trains, traction engines and Charlwood - that's his world.
Every room - upstairs and downstairs - is home to his life time's collecting.
This is the kitchen.
Beyond is the path to the back garden - now a covered way, where a mass of railway locomotives, gadgets and signs and ephemera are housed.
We also had a cup of tea with a brother in law. We missed Bill's sister, Sheila.
Bill played with their dog.
Despite everything the Christmas socialising is happening.
In the evening we were at The Hawth for Maypole to Mistletoe.
It was an evening of folk song and dance, poetry and the Mummer's Play.
I think Bill liked the bouncy music.
But if things were hard for him to concentrate on he would turn and stare at me. He stares often.
But I was absorbed.
Eventually I would turn my head to ask him to stop and he pipes up "peeb bo!"
Ouch, ouch!
But I continued to play the part of feeling content....and I was really. The entertainment was great.
It follows me wherever I go, wrapping its nasty fingers around my very being.
Dementia is always there, waiting to pounce.
It is unpredictable.
This has not been a good day.... nor in fact was yesterday.
I keep trying to fill my life in the hope that I can escape it - but nothing masks it at its worst.
Huh? call this the worst, Paula?
And we have filled the days......I have enjoyed some memorable things.
But for Bill they cannot be memorable, there is no memory.
Yesterday I dragged him into town. I needed shopping and I thought he would enjoy eating out.
The green stuff (rocket on the side) and that wonderful looking red garnish is handed to me.
Leaves seem to be alien to Bill's world.
That's egg benedict La Rusta style.
Maybe I would do best to leave him with his bowl of cornflakes.
But I am used to company and it is always a shock to the system to remember that although I have a person with me, it is not the man I knew.
We also called on an old friend. Tony Killick is an 80 year old, old friend. Old and frail, but still the man we have known for 50 years and much more.
We must go back soon - he so wants to share his world with us.
Tony's world is the culmination of 80 years of hunting and hording.
Anything connected with bikes, steam trains, traction engines and Charlwood - that's his world.
Every room - upstairs and downstairs - is home to his life time's collecting.
Beyond is the path to the back garden - now a covered way, where a mass of railway locomotives, gadgets and signs and ephemera are housed.
We also had a cup of tea with a brother in law. We missed Bill's sister, Sheila.
Bill played with their dog.
Despite everything the Christmas socialising is happening.
In the evening we were at The Hawth for Maypole to Mistletoe.
It was an evening of folk song and dance, poetry and the Mummer's Play.
I think Bill liked the bouncy music.
But if things were hard for him to concentrate on he would turn and stare at me. He stares often.
But I was absorbed.
Eventually I would turn my head to ask him to stop and he pipes up "peeb bo!"
Ouch, ouch!
But I continued to play the part of feeling content....and I was really. The entertainment was great.
And let us continue to act spontaneously and full of fun.
I asked a complete stranger to take a photo of us with our mistletoe.
This morning, with the storms of the night over, we went to Ford.
I wasn't sure if Bill would come.
I bought books and handkerchief vases.
There are many colours and patterns. This was one I bought - like a gingham handkerchief!
Over breakfast I told Bill that lots of people had been commenting on the picture of us and the mistletoe which I had put on facebook.
"What mistletoe?"
"You remember......the mistletoe we were given at the end of the concert"
"What concert?"
"The concert we went to yesterday evening."
After lots of prompting about the songs and the dancing he seemed to remember - but not where we went.
It had been lovely - put me back in touch with my Pagan side!
We couldn't stay long in Littlehampton.
I had to deal with that wee problem that crops up in my life now and again.
This afternoon I needed to go to town - a parcel to collect and a parcel to post.
"Do you want me to come with you?"
If Bill wanted to stir himself into action, I shouldn't stop him.
But already feeling stressed, I found it hard to cope with marching round the town with a loud exhaling of breath from his mouth with every right foot forward.
"I am a marching soldier".
How could I restrain myself from tutting?
So he laughed at me - like he so often does.
It is a false, loud laugh which builds up into coughing.
Something else to tut about!
This evening he was watching TV as I played with photos
. I felt a little calmer - peaceful and alone.
Then he came out to kitchen loudly huffing and puffing and clapping hands.
"Go to bed!"
So much has changed in the last year.....and the rate of change seems to be quickening all the time.
I don't like the days when I cope badly. I don't like the knotty feeling inside as my anxiety builds up.
What happens when every day feel like this?
Do I turn to drink? That's not wise - but I have opened a bottle of wine this evening to help relax me before my own bedtime.
Tomorrow is another day. We have planned to go and see the old couple who were Bill's neighbours when he was growing up.
I need this outside contact as often as possible.
And, as it is the day before the Winter Solstice I will decorate the house a little - ready for that special day.
