Realityarts - Inspiration, Art and Creativity: A-Z Challenge

Showing posts with label A-Z Challenge. Show all posts

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 r;e-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 organisations 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.

I also write and create resources that link the arts and health - through art journals, art work, images, and a patreon network you can also check them out:

Art and Creativity website

I am a mixed media artist and create art sculptures and wall hangings

Art Patreon
Creative videos art journal video tutorials, rewards and more

Gardening Patreon
Horticultural therapy, gardening in the caribbean

Realityarts on Amazon
Hints and tools, books and more as you journey into creativity

Words so far....

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....

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....

Monday 23 April 2012

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....

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 meantime 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 for Identity, 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

Before You Go - Check out the Art Resource Hub for creative resources and free digital art backgrounds for your creative projects. Learn More

Friday 20 April 2012

R is for Regret

We all know what it is like to have regret in our lives, something we wished we said or something we wish we did or didn't do as the case may be. Regret can keep us locked in the past of never being enough.

When I think back to when my mother looked after my dad until he died, she was on her own. I used to come and visit but didn’t understand what it took her to get though those days. I realise now how hard it was for her. Is it regret that motivates me now?....I sometimes wonder, ashamed of my 26 year old self who could have done more.

Regret can stop you in your tracks as you burden yourself with all the things that you could have done. When illness strikes do you wish you spent more time at the office working or worrying about who didn't wash the dishes? You can’t dwell in regret and have to accept you have the choice to either make changes or stay as you are.

As I reflect I allow it to motivate me, knowing that I am enough and I will do what I can while enjoying the processes in between. It is important to make the most of relationships and even in illness create positive memories to be able to look back on without any regrets.

How has regret impacted on your life?

Words so far....

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 month 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 18 April 2012

Q is for Quietness

Sometimes in the midst of everything mum goes quiet, there is a stillness about her as if she is listening to her own thoughts and seeing her own insights. She is captivated by the moment and moves her head as if she has gained a revelation.

When I ask her what she was thinking and she looks at me with an amused look on her face, an expression that seems to be saying "there is so much for you to understand about life". Those moments sometimes makes me sad because I imagine she is confused, it is something I can’t share with her and she can’t explain her thoughts, but at other times I realise that these moments of stillness can also be her way of gaining understanding and reflecting - bringing clarity, maybe it is an aha moment!

Words so far....

Tuesday 17 April 2012

P is for Purpose

We often wonder what our purpose is and want our lives to have meaning. I never once imagined that I would be a carer, having to make the decisions for my mums life and dealing with the responsibility.

I have always been an organised person, loving lists and order. I love organising the lives of others and my previous job as an Executive PA addressed the need for these skills in making sure my boss was where he needed to be at the right time or the conference went smoothly.

I saw the skills transferring to my own business when I was made redundant. What I also had to do was transfer the skills I used in all my jobs and refit them making them fit for purpose as a carer and constantly remind myself how far I have come. As we gather new experiences to deal with the tasks at hand we are equiped with additional skills for the next challenge that will come.

What challenges have you faced and found you were able to deal with when you really got down to it?

Words so far....

Monday 16 April 2012

O is for Opportunities

Mum on holiday in Portugal

In life stuff happens and we have to look for the opportunities that can present themselves, and these are often disguised under all the rubble and the dust. There were times during the early stages of mum’s dementia that I really didn’t know what to do and felt lost and alone, I just wanted it all to stop. I didn’t think that I could get through it, and certainly couldn’t or didn’t feel that I could look forward to anything but increased stress, it is not to say that the stress of it has all disappeared, I have just had to learn to deal with things differently.

The thing that helps me through is to focus on the things that mum can do and celebrating this. She loves to dance and sing, she became enthusiastic about going out so this calls for new adventures and she is willing to come along. It is my opportunity to create new memories that we will all be able to look back on and smile, show the grand kids and great grand kids what she was like despite the illness, and for us to enjoy the time we do have with her.

Life’s opportunities don’t always come packaged the way we would like, but very often these are the most memorable ones.

Words so far....

Sunday 15 April 2012

N is for Neighbourhoods

A view from Parliament Hill Fields, over looking the City of London

When we were growing up as kids you knew all your neighbours and they looked out for you. We were always scared of doing something wrong as dad seemed to know everyone and it might get back to him and then we would get in big trouble. I remember riding with my brother on our pale blue scooters, doing wheelies, feeling free - not the slightest idea of what changes were to come. Defying the ‘NO BALL GAMES' sign and playing football, climbing walls, laughing out loud with the other kids on the adventure playground, flying kites and so many adventures on Parliament Hill Fields. It is very different now, as we have grown older, some grey hairs are peeping and the knees are not quite what they used to be. The neighbours have passed away and the new families now living in isolation, a quick hello then they rush behind closed doors to find sanctuary.

Last year, one Saturday afternoon mum was dropped off early from her day centre and before anyone could get there she decided to go for a wander with a 'new' neighbour holding the door open for her. When the police arrived I felt annoyed by what seemed like pleasantries, and routine reassurance, we just wanted her back. We scoured the streets for hours and paced the floor wondering how she would cope when it got dark - we were sick with worry. The doorbell rang, and mum waltzed in with two strapping police men laughing and joking "hope to see you again" she said .....She was found 5 miles away, having crossed several large roads and taking a bus ride.....What can I say!! She never has told of her own adventure but we were thankful that the people she talked to on the way had the foresight to realise she was lost and call the police.

Words so far....

Friday 13 April 2012

M is for Motherhood

Limosine ride in Florida

As a mother there is a perception that you would automatically be able to care, you nurture and grow your young and care for the elderly - sometimes you want to switch the button off and care about yourself. As I adapt to the growing maturity of my 16 soon to be 17 year old son who at times thinks that he knows everything and wants to do it all himself and be independent with his talk of learning to drive, university, living abroad etc.... I know I have to let go in order for him to grow.

I don't always see myself as a carer, the term can be so impersonal aren't we all supposed to care? I understand the term carer attempts to represent the variety of roles that are undertaken, but it still falls short, all the books in the world still can't prepare you for the emotional rollercoster ride you experience. What has been helpful has been sharing with those who have been in a caring role who can speak frankly about their experience.

It can sometimes feels like I have been given responsibility for a fully grown 'child' like in the Curious Case of Benjamin Button. I battle with knowing the 88 year old woman who use to be independent wants to do everything for herself but can't. I watch her drift off in thought and wonder if she contemplates about those unfulfilled dreams she had when she was younger.

Mum talking on the radio about Mothers day

My overriding joy I have as a mother looking after my mother is that I may not be able to give her the dreams of things she wanted to do when she was younger, perhaps I can help her achieve those things that she never dreamt she would be doing.

Words so far....

Thursday 12 April 2012

L is for Love

A trip to Portugal 2008, mum decides to show everyone how it's done!

I have grown to accept the changes that happened and will continue to happen in regards to my mothers health. Before I understood how dementia affected the brain I thought mum was doing things on purpose – moving and mislaying things, or saying insensitive things to hurt. I realised that her love for me had not changed and neither should mine for her. You can’t see the dementia but only experience the effects of the illness and so it's harder to come to terms with the person that you love changing. You have to learn to put all that aside.

I feel the child in me wanting to be loved in the way mum used to express it, with hugs and caring words, or a soothing song at bedtime. We have to now embrace the children we are inside remember to nurture the hurt we feel at the loss of those we love.

Words so far....