Sunday, 29 April 2012

365 Days of Colour - Flower of the Day 321 - 327


A straight path
Sometimes it isn’t the winding road which leads to mystery and surprise.  At times the straight path unfolds and brings us treasures beyond our comprehension.

Day 321
  
Reflection 
The hard times in your life will develop the pearls of wisdom... 

Quote 
If art is not to be life-enhancing, what is it to be? ...May Sarton 

Scripture But now, thus say the Lord ‘Do not fear, for I have redeemed you; I have called you by name; you are Mine!’ Isaiah 43:1


Day 322
 
Reflection 
Time to start over 

Quote 
Art and works of art do not make an artist; sense and enthusiasm and instinct do. ...Friedrich Von Schlegel  

Scripture 
The Lord’s hand is not so short that it cannot save; neither is His ear so dull that it cannot hear.  Isaiah 59:1


Day 323
 
Reflection 
Be brave, all things are possible 

Quote 
Expose yourself to your deepest fear; after that, fear has no power, and the fear of freedom shrinks and vanishes. You are free. ...Jim Morrison 

Scripture 
The one who sows to please the Spirit, from the Spirit will reap eternal life. Galatians 6:8


Day 324
 
Reflection 
Don’t worry, it will be alright 

Quote 
Art thaws even the frozen, darkened soul, opening it to lofty spiritual experience. ...Aleksandr Solzhenitsyn 

Scripture
I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ.  Ephesians 3:17-18


Day 325
 
Reflection 
As a work in progress, go easier on yourself 

Quote 
Fear is the reason for making art. It is a means to freedom. ...Ilya Kabakov 

Scripture 
The needy will not always be forgotten, nor the hope of the afflicted perish forever. Psalm 9:18


Day 326
 
Reflection 
There is always tomorrow, you have a chance to start over! 

Quote
Art is the only way to run away, without leaving home. ...Twyla Tharp 

Scripture 
For whatever was written in earlier time was written for our instruction, that through perseverance and the  encouragement of the Scriptures we might have hope. Romans 15:4


Day 327
 
Reflection 
You are able to do all that you set your mind to! 

Quote 
Sufficient to today are the duties of today. Don’t waste life in doubts and fears, spend yourself on the work before you; well assured that the right performance of this hour’s duties will be the best preparation for the hours or ages that follow it. ...Ralph Waldo Emerson 

Scripture 
The Lord is faithful, and He will strengthen and protect you from the evil one. 2 Thessalonians 3:3


Z is for Zephyr


Zephyr - a soft gentle breeze of change 

It came on without warning, there were no loud noises a fanfare just a few tell tale signs.  It blew in as if on a gentle breeze, we all felt it as it brushed past us, noticing slight things but not really seeing as it settled at mums door.  Mum embraced all that she is and met it head on, and defines the world to mean something for her despite the situation.

She dances as it breezes through her memory, some became distant and others drifted in and out like the fallen leaves of autumn, yet, holding no regret she faces each day as new.  She has been a comfort and support as she still holds on to her humour and grace - she is all that she needs to be.

The dementia almost forces us to learn to use our senses in a very different way, learn a new language, see our lives differently.  We have each been called for a purpose, to touch each others lives, dig deeper make more effort, and go that extra mile as the lives of generations are changed.



Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret, S is for Strategies, T is forTradition, U is for Understanding, V is for Value, W is for Websites, X is for Xerox, Y is for Yearn

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

Saturday, 28 April 2012

Y is for Yearn



I do sometimes long for things to go back to how they used to when mum didn’t have dementia, to have a bit of what I think is normality.  But if it did, perhaps I wouldn’t have seen so much of her, wouldn’t have got to know her like I have, to listen to her stories as she tells them over and over again of how she met my dad. 

Those stories some how brings his memory to life even though he has been gone for over 20 years but also brings me comfort.  There came a point where it didn’t matter how many times mum told the story as she became animated -  she remembered him calling out to her as she walked by and she turned coyly and asked ‘who me’ – she had actually noticed him before and wanted to catch his attention. We never heard the stories before the dementia and she never danced, but now she loves to sing and dance and calls herself ‘the dancing queen’ after the Abba song.
video

Yes I do sometimes yearn for a good night undisturbed sleep when I am there, but also I appreciate my life more and it is most certainly richer despite all the ups and downs.


Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret, S is for Strategies, T is forTradition, U is for Understanding, V is for Value, W is for Websites, X is for Xerox

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

Friday, 27 April 2012

X is for Xerox (copy)


Living with dementia some times reminds me of a Xerox.  It can feel as if you don’t have the original person you grew up with but the copy of the person who is unable to do all those things you took for granted.  I always thought mum would still be giving me advice and our relationship would move on to the next stage of mother/adult daughter relationship. When I was ready to listen she was slowly retreating....

I often imagine how she would express what it is like to have this unknown dancing partner I try and put myself in her well worn shoes, which is not often as looking after the practicalities can be a welcome release from the emotional side.  Thinking about what she is thinking can bring up a whole different set of dialogues that sometimes go like this:
"People suddenly don't seem to understand they repeat themselves, ignore you or get annoyed at the things that you do.  You don’t quite do it quickly enough or the right way they sigh and breath heavily.  Their words jumbling up and they expect you to understand or they speak slowly as if you can't catch their words.  A world where sound is different, sometimes things are loud, magnified and distorted.  They can’t see those things that crawl on the floor, so you pretend they don’t exist, nor can they see the others that often meet us in what they keep saying is my house.  It looks different and smells different and there are new people there who wander from room to room sitting and staring as if lost.
Amanda sometimes speaks in a tone like I’m her child, I never thought the tables would turn I never used to rely on anyone to help me, I tell her not to use that tone with me and I play along for a quiet life, but I do miss my mum.  These bones not quite what they used to be.  I ache as I get out of bed and then the alarm goes off, and they rush in your room - you sometimes don’t get a chance to breath, there is always someone there telling me what I should do, it is very different to how it use to be...."
It is different, I struggle to remember what it was like before, I've adapted as she changes and when I think about how she must feel I give her a bit of space.....so much has changed.  I cannot pretend I've got it all together or know all the ins and outs, but what I will try and do is face them head on and grab them with both hands and deal with each day as it comes.

Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret, S is for Strategies, T is forTradition, U is for Understanding, V is for Value, W is for Websites


These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

Wednesday, 25 April 2012

W is for Websites



I thought I would list some of the great resources that I have come across over the years that have really helped not only for people who have dementia, but for those who are carers.  There are a range of websites that have provided information and encouragement. 

Arts in Health - NHS Network
Arts in Healthcare aims to promote, share and encourage the use of art and creativity in the healthcare environment. - This is a network that I started to encourage those involved with the arts to collaborate and share information. 

Arts 4 Dementia
To work in partnership with existing agencies to inspire and re-energise people living with dementia in the community, to bring fulfilment to their lives - and provide opportunities for quality time with their carers and loved ones - through engagement with their chosen art form. 

Arts and Dementia Network 
is a forum for the North East of England which aims to bring together and support professionals working in the arts, health and social care, who are interested in providing opportunities for people with dementia to engage in arts activity.

Culture and Wellbeing
Resources for creativity and health

London Arts in Health Forum
London Arts in Health Forum is a membership organisation which aims to develop the role of culture in wellbeing and to promote and support arts in health activity across London and nationally. 


There are so many more organsiations out there, if you have come across any or you are an artist interested in sharing information join the Arts in Health Network and leave your details, from time to time we would like to feature any work of artists that involves creativity and health.




Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret, S is for Strategies, T is for Tradition, U is for Understanding, V is for Value

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

Tuesday, 24 April 2012

V is for Value


As I look at my mother I truely value our relationship and I still see hope.  I know that if we focus on the things that she can do we will have a much more rewarding encounter.  She can still communicate, laugh, and in some instances learn.  She still has a kind word to say to those she meets and asks you if you are alright.

When encouraged she can also make you laugh and you forget that it is she that is dependant on you. I sometimes look at my mother and wonder when I reach her age if my son will find qualities in me to celebrate and I hope I impart to him the importance of valuing relationships.



Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret, S is for Strategies, T is for Tradition, U is for Understanding

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

U is for Understanding



Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge him and he will make your paths straight...Proverbs 3:5-6

I have tried to understand why and how mum has dementia, why our family, why now, why after looking after my dad did she then go on to develop it and what other factors played a hand - was it the isolation, being consumed by dads illness?, loosing a support network?, could it have been her high blood pressure, depression, food or environmental?  What was the trigger...

With so much people being affected it makes you wonder why a cure cannot yet be found, we hear so much information - suggestions and solutions in the news papers every other day.   In undersanding the frailty of the life we sometimes take for granted things that we can do now.  I know that in my own understanding I do not hold the answers but we can often miss the now as we focus on what we can no longer do.....


Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret, S is for Strategies, T is for Tradition

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

Monday, 23 April 2012

365 Days of Colour - Flower of the Day 314 - 320

Peace
In the peace and stillness we are able to think, to gather our thought for the day, solve a problem come up with the answer to the mystery, we can heal.  In the peace we really get to listen to our surroundings and find the beauty around us. 

Day 314
 
Reflection 
Pay more attention to want matters most.. 

Quote 
Art is the journey of a free soul. ...Alev Oguz 

Scripture 
Not that we are competent in ourselves to claim anything for ourselves, but our competence comes from God. 2 Corinthians 3:5

Day 315
Reflection 
You will soar like the eagle

Quote 
Art is the demonstration that the ordinary is extraordinary. ...Amedee Ozenfant 

Scripture 
And Jesus said unto them, ‘I am the bread of life; he that cometh to Me shall never hunger; and he that believeth on Me shall never thirst.’ John 6:35

Day 316
Reflection 
You always have a choice, don’t settle for what makes you feel small! 

Quote
I have accepted fear as a part of life- specifically the fear of change… I have gone ahead despite the pounding in my heart that says: turn back....
Erica Jong 

Scripture 
He gives strength to the weary, and to him who lacks might He increases power. Isaiah 40:29

Day 317
Reflection 
Time to be still..... 

Quote 
Art is not the bread, but the wine of life. ...Jean Paul Richter 

Scripture 
No discipline seems pleasant at the time, but painful.  Later on, however; it produces a harvest of righteousness and peace for those who have been trained by it.  Hebrews 12:11

Day 318
Reflection 
Enjoy the life you currently lead don’t just endure it 

Quote 
When you have confidence, you can have a lot of fun. And when you have fun, you can do amazing things. ...Joe Namath 

Scripture 
...Jesus said, ‘If you hold to my teaching, you are really My disciples.  Then you will know the truth, and the truth will set you free.’ John 8 31-32

Day 319
Reflection 
Stand up for what you believe in and you won’t regret it 

Quote 
It’s easy to get bogged down in the circumstantial and mundane, but if we connect to our passion, that in itself will be regenerative; we won’t have to wait for the energy, it will be there. ...Nina Simonos 

Scripture 
The world is passing away, but also its lusts; but the one who does the will of God abides forever. 1 John 2:17

Day 320
Reflection 
Be honest with yourself 

Quote 
I could never convince the financiers that  Disneyland was feasible because dreams offer too little collateral. ...Walt Disney 

Scripture 
And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus. Philippians 4:7

T is for Tradition


We grew up without seeing our grandparents often, they lived in Jamaica.  We use to watch our parents write and send money back to help them get much needed things, and make the trips to the post office for them.  We looked forward to returned letters of thanks and what was happening back in Jamaica.  I didn’t meet my grandmothers until I was 18 years and took our first family holiday. My paternal grandmother had a playful character, she loved to laugh, I wanted to spend hours listening to her talk.  My maternal grandmother was quieter but had a peaceful spirit and you immediately felt comfortable in her presence.

Being in the UK we were not there when they got sick and our parents would send money back for siblings who lived in Jamaica to help get the care they needed.  I never saw or imagined what it could be like to care for your parent as they got older, in my mind our parents would stay exactly as they were forever and never grow old.  But we did, we grew old and our parents grew frail and we wondered where the time went.

My son has grown up with his grandmothers and has seen the impact on the family as they got ill, with his paternal grandmother passing when he was 7years old.  For my mum the once family traditions of meeting for dinner with the grandchildren playing each weekend has been replaced with schedules of care and who is on that weekend.  We try and continue the many traditions knowing that as they get older the kids will be developing traditions of their own..  What kind of traditions do you still keep from your childhood days?


Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret, S is for Strategies

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

Saturday, 21 April 2012

S is for Strategies

Studies have shown that the less sleep you get the more it impacts on your mental health and well being.  Sometimes mum gets confused between night and day, you could be up till all hours convincing her that it is time for bed, I have had to develop strategies to cope with her understanding of time and can sometimes operate in the twilight zone myself!

I had to learn over the years among other things to alter the tone of my voice and find different ways of communicating that sometimes works and other times won't.  In my moments of frustration too tired to find a different strategy to convince her back to bed she tells me not to use a particular tone or remind me that I too sometimes forget.  

A different strategy is called for when dealing with some health service workers.  In their efforts to deal with what 'current policy' says some can get defensive when you question the practicalities. Recently in asking for a few weeks respite break they ask me why I need it, (even though I have to pay for it, they determine if it is justified!)....on top of that some of mums information is missing.  I take a deep breath and smile as I respond to their questioning mentioning my surprise that the information is missing after 3 years on the system and how frustrating for the carer this can be.  I am told nothing has been decided and to call back the following week.  The next person I speak to tells me that the notes on mums file say I was "agitated", he is less defensive, and cheerful and so I explain to him that I was concerned and worried that important information could go missing especially when it was time sensitive.  He says he understands, but my request has not yet become a priority, I should ring back the following week.  Yes...strategies....... in the mean time I've found hot chocolate and camomile works a treat....I will see if I can get 40 winks! 


Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.
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