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.

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....

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

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.

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....

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 

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.

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....

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

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.

365 Days of Colour - Flower of the Day - 307 - 313

Growth

If we don’t grow we stand still, wither and fade away.  When we don’t use our mustles they become weak, if we don’t continue to learn and use our brain our cells die off.  A child grows up to be an adult and has responsibilities.  What area in your life do you need to turn the spotlight on to encourage growth?

Day 307

Reflection 

You have blessings waiting for you!

Quote 

Art is not to do with the practical side of making a living. It’s to live a fuller human life. ...Henry Moore 

Scripture 

Delight yourself in the Lord; an He will give you the desires of your heart. Psalm 37:4

Day 308

Reflection 

Today matters!

Quote 

Art is an experience, not an object....Robert Motherwell

Scripture 

The Lord isgood, a refuge in times of trouble.  He cares for those who trust in Him. Nahum 1:7

Day 309

Reflection 

Miracles are waiting to happen – open your eyes!

Quote 

Wander a whole summer if you can. Thousands of God’s blessings will search you and soak you as if you were a sponge, and the big days will go by uncounted....John Muir

Scripture 

I am the vine, and you are the branches; he who abides in Me, and I in him, he bears much fruit. John 15:5

Day 310

Reflection 

You have wonderful things happening in your life.. 

Quote 

The key is to trust your heart to move where your talents can flourish. This old world will really spin when work becomes a joyous expression of the soul.....Al Sacharov

Scripture 

A joyful heart is good medicine, but a broken spirit dries up the bones. Proverbs 17:22

Day 311

Reflection

There is a time and a place for everything, and everything in its season

Quote 

Every day I discover more and more beautiful things. It’s enough to drive one mad. I have

such a desire to do everything, my head is bursting with it.......Claude Monet as a young painter 

Scripture 

Do not repay evil with evil or insult with insult, but with blessing, because to this you were called so that you may inherit a blessing 1 Peter 3:9 

Day 312

Reflection 

There are blessings waiting just for you

Quote 

Art is a language. It’s not a skill. It’s not a stunt. It’s not something that you just learn to do and put it down. It comes from the heart. ...Wynona Mulcaster

Scripture 

Unless the Lord builds the house, they labour in vain who build it; unless the Lord guards the city, the watchman keeps awake in vain. Psalm 127:1

Day 313

Reflection 

Everyone who truely knows you believes in you, do you believe in yourself?

Quote 

Good art speaks truth, indeed is truth, perhaps the only truth...Iris Murdoch

Scripture 

The Lord longs to be gracious to you....He waits on high to have compassion on you.  Isaiah 30:18

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....

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

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.

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....

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, 

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.

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....

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

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.

K is for Knowledge

What do they really know about dementia?...., The carers are becoming the professionals dealing not only with the emotional aspects but the physical, and psychological day in and out of the role, their knowledge and understanding increases, but they don't have the space to share...

I have come across many service providers whose work impacts on the elderly and carers that haven’t had any training in dementia care.  In my own role I have had to learn to interpret my mothers every action from why she is doing something that seems irrational to what she could possibly be trying to communicate, on top of ensuring she has a good quality of life. This has taken time, a lot of reflection and asking myself how would I feel if it were me in her position..!.

More and more organisations are consulting with carers getting them to share their experience with health care professionals.  I am currently involved in delivering workshops to students who are training to be social workers and helping them to not only understand but relate to the role of the carer - I have been able to develop a series of talks using creative activities. I think that it is vital for the carer as well as those who have to interact with them to have a basis for understanding just how complex the role can be, and ensure that there are opportunities for sharing experiences and increased dialogue that can only bring about positive change.

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

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.

365 Days of Colour - Flower of the Day 300 - 306

Development

Continuous development ensures growth.  The way in which you choose can be varied and can take on many forms.  Making sure you have a plan for the development will enable you to keep an eye on whats going on and what you need to do next....

Day 300

Reflection 

Keep going, your getting close, doors are opening.. 

Quote 

Enthusiasm is not an emotional state. It is a spiritual commitment, a loving surrender to our creative process. Enthusiasm (from the Greek, “filled with God”) is an ongoing energy supply tapped into the flow of life itself.  – Unknown 

Scripture 

Those who trust in the Lord are like Mount Zion, which cannot be shaken but endures forever. Psalm 125:1

Day 301

Reflection 

You are blessed more than you know... 

Quote 

Art enables us to find ourselves and lose ourselves at the same time....Thomas Merton 

Scripture 

Blessed are the pure in heart; for they shall see God. Matthew 5:8

Day 302

Reflection 

You are a blessing to many 

Quote 

It’s kind of fun to do the impossible....Walt Disney 

Scripture 

The Lord is near to all who call upon Him, to all who call upon Him in truth. Psalm 145:18

Day 303

Reflection  

Rejection is a part of life, don’t dwell in it, move on, don’t give up.. 

Quote 

Art should be something like a good armchair in which to rest from physical fatigue...Henri Matisse 

Scripture 

Therefore being justified by faith, we have peace with God through our Lord Jesus Christ. Romans 5:1

Day 304

Reflection 

You inspire others by being you... 

Quote 

To love what you do and feel that it matters- how could anything be more fun? Katherine Graham 

Scripture 

I am still confident of this; I will see the goodness of the Lord in the land of the living. Psalm 27:13

Day 305

Reflection 

The answers are there, you need to ask the right questions.... 

Quote 

These then are my last words to you: be not afraid of life. Believe that life is worth living, and your belief will help create the fact. ...William James 

Scripture 

No one who is born of God practices sin, because His seed abides in him; and he cannot sin, because he is born of God  1 John 3:9

Day 306

Reflection 

Take time to renew and recharge your batteries 

Quote 

Art is like singing. Some do it better than others, but everyone can and should be doing it for their soul. ...Barbara Mason 

Scripture 

He is the Rock, His works are perfect, and all His ways are just.  A faithful God who does no wrong, upright and just is He. Deuteronomy 32:4

J is for Judgement

I hated the thought of admitting I was finding hard to cope with my mums increasing memory loss, with a young son who didn’t understand why his mum had to stay at Grans practically 5 nights a week and the stress that it put on my own health.  I felt if I really admitted that I needed help that it was a sign of weakness...I should be able to look after my family after all!

What I realised as my experience of the illness grew was that despite what anyone thought  it wasn’t a sign of weakness admitting that I was finding it hard to carry on as it was.  The help was there you had to know how to shout loud enough and often enough and then it came in drips and drabs, but you had to keep shouting to let your voice be heard.

You also had to deal with the 'one label fits all' – as a carer it is hard to have a life outside of your role, your role defines you and when health professionals see you they don’t often have the time to see the life behind the tag of  'carer', what the person did or the life they had before they had to take on the role.  It's one of the things we have to guard against judging the situation without finding out all the facts and most of all we have to guard against the judgements we can make against ourselves.

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

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.

I is for Identity

Holding on to your identity is important when you become a carer otherwise you can loose yourself in the role. We have so many lables within society that the true essence of who you are becomes a distant memory. There was a time in the early years of mums illness that I felt like the more I did for my mum the more I lost a piece of myself,  and was totally consumed.  It reminded me of the fragility of life, I knew that I had to hold on to who I was.

Growing up I was looking forward to relating to my mum as a mother myself, going to her for advice and sharing the joy of watching my children – her grandchildren grow up.  As a carer you loose your identity in society, the cared for have carers - an entity in themselves and many no longer have family members around.  Communities fragmented and the extended family becomes devalued and a thing of the past as the elderly are seen as a burdon, rather than filled with wisdom, memories and insight.

I found separating the roles helps and enables me to still enjoy my mothers company despite how dependant she becomes.

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

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.

H is for Health Professionals

Since becoming a carer I deal with a wide variety of health professionals.  The journey has been like a walking through a maze with different routes and hoops to jump and never ending forms to complete whenever you need to make a request.  Every year the policies change and new procedures developed - new roads to venture down, mountains to climb and further cuts to services that impact on carers and those they care for.

I have met those who really want to assist you but their hands are tied by beaurocracy and according the form that took two hours to complete you didn’t score enough points even though they can see that there is a need.  They will actively look for solutions to the problems.

I have also come across those who as far as they are concerned putting mum in a home is the best option giving them one less client to worry about.  I gave up trying to convince the social worker who suggested this. I asked her how mum could be better off in an environment where there were 15 - 20 residents to 1 or 2 members of staff as opposed to the 1:1 care in her own home she persisted in her suggestions telling me how well the homes were monitored.  That very week in the papers was a scandal that identified how many residents had been mistreated in a home in the same borough that my mum lived.  - "Ok" I said "I will give it some thought", worried about the recommendations she would put on mums file if I was totally honest with what I thought of her idea.  Obviously if a care home is a choice that you have to make after research and weighing up your situation then you do it without feeling badgered into the decision.

You need to make sure you get as much information as possible about services available so that you can access them.  When mum first went to the day care centre she hated it, saying it was full of old people who weren't well, after a while it became an outlet for her rather than being stuck in the house, as far as she is concerned now she is going to work and helping others!

Sometimes we can get so bogged down with the role and what people might think of us not coping that we are frightened to let others in. I used to wonder if anyone else could look after mum the way I could - I became the expert.  Know that you can make room despite the circumstances, and the appearance of things, you have to learn how to ask, and ask again and, and keep asking because the help and the answers are out there!

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, 

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.