Preparing for Alzheimers

Happy New Year!

How would you prepare for Alzheimer's, is it possible?  I recently saw a video that got me thinking about my life and as we make our way through another year I am sure new challenges and miracles will present themselves.

I have been writing about my journey as a carer to a mother who has dementia and also feelings that arise that I have been dealing with when I did the A-Z challenge.  More recently I put together a video called creative interventions which looked at taking art therapy and remaining creative, which have all contributed in enabling me to look at my role in a positive way.

While on the TED website I came across Alanna Shaikh who talked about her father who has Alzheimer's. I had always kept at the back of my mind the statistics that show dementia running in families and I began to think of ways that I too could avoid it in my later years, the possible implications of my son being put in the same position. 

Alanna mentioned the type of person that her father was before the dementia, he was very caring and loving to others and this magnified as the dementia got worse.  This resonated in me as mums personality became not only outgoing with a great sense of humour, but she was even more caring. 

As I look at my mother I definitely see the warmth in her, and she is still someone you enjoy being around. She cared for her family selflessly and that care and love shines through despite the circumstances.  So as I go through this journey with her I will ensure that I do all that is necessary to keep myself healthy, taking the necessary exercise, keeping my mind active and stimulated but more importantly will also try and be a better person, loving unconditionally, living fearlessly, valuing the relationships of family and friends while treating myself with kindness and compassion and living life to the full and being that blessing that we are all called on to be. 

I'd love to hear what insights you have realised about your lives.  Blessings

Join me every day this month for the Ultimate blog challenge 

A - Z Challenge Reflection 2012

This was my 2nd year taking part in the A- Z Challenge, and it seems to have come and gone really quickly. We had over a thousand people taking part in the challenge and it was run by founder Arlee Bird and his A-Z Team, a big thanks goes out to them! 

Alex J. Cavanaugh (Alex J. Cavanaugh), Amlokiblogs (Damyanti Biswas), Coming Down The Mountain (Karen Jones Gowen), Life is Good (Tina Downey), Retro-Zombie (Jeremy Hawkins), Cruising Altitude 2.0 (DL Hammons), The Warrior Muse (Shannon Lawrence), The QQQE (Matthew MacNish), Author Elizabeth Mueller (Elizabeth Mueller), No Thought 2 Small (Konstanz Silverbow), Pearson Report (Jenny Pearson), Breakthrough Blogs (Stephen Tremp).


This year I decided to write about my experience with Dementia and caring for my mother. It was something I really wanted to do as I often find it difficult to express how I feel without a lump coming to my throat, even more so trying to imagine how my mother feels.  I often swiftly put my thoughts to the back of my mind while I get on with the practical tasks of her care.

What really helped in writing for the challenge was to be able to put things in perspective and face up to how I felt about my situation, show the person behind the label and give you a glimpse into our world. 

There was much love and support from those who commented which helped you to feel that you were not on your own. I would like to thank all those who visited, commented and decided to follow my blog. Its always great to make new connections and form friendships.

It was especially great to visit new blogs and get to read so many interesting posts. I didn't get to visit everyone, but will attempt to this month - looks like another challenge....!  If you didn't get to participate I encourage you to dive in next year, it's great fun and once you start you will be hooked.

Next steps for me....I find these monthly challenges really do encourage you to step out of the box,  stretch yourself and grow while interacting with people from all over the world. In June I will be resuming my Try something new for 30 days - and possibly try some new art techniques. Do let me know what your next steps are and I will come and be your cheer leader....Blessings!

What a Challenge!

If you missed any of the posts for the A-Z Challenge you can see them below.  I will be sharing about the journey with the topic being so close to me about my mother with dementia on the 7th May.   I will let the dust settle and reflect on all the things that came up.  I hope you have been blessed with the posts as much as it has blessed me to write, and your comments have really been encouraging.  Over the next few weeks I will also be sharing some news, I am quite excited about and its been a long time coming....for now blessings and hope you are having a blessed week.

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, W is for Websites, X is for Xerox, Y is for Yearn Z is for Zephyr

These posts were part of the A-Z Challenge which took part 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. Do check back for a reflection post taking place on the 7th May 2012.

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.

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.

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.

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.

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....

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.

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.

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.

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

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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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....

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

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.