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.

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.

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.

G is for Guilt/Grace

I felt a lot of guilt over the past few years over what I didn’t do to help my mum when dad was sick and died.  Now I am looking after mum I wonder how she coped especially when dad was at his worst.  Between the ages of 18 – 28 years I thought only of myself and my needs.  I can’t quite imagine how a 5ft  woman cared for a 6ft 3 husband all on her own - in those days there were no carers meetings or social service support, respite was something that the wealthy folks did.....a lot has changed....

I remember mum saying "in my day..." and I promised myself that I would never utter the sayings of my parents when I became one - but I also find myself repeating these words to my son, or telling him to "turn the music down" - my ears tuned to a frequency that the doctor wants to lable as 'middle age'!

I must say it’s by Gods grace that I have made it through, some days, especially those ‘I can’t go on like this’ days,  it's his grace that despite mums confusion whatever you do for her she still always says ‘thank you’ or asks how you are.  Mum can still laugh and see the humour in things and I do think that this is attributed to being able to live in her own home with external support.  If she had been in a care home her decline would be quicker.

It’s by grace that when I complained all those years ago about no time for art, not having a studio, that I was able to run art workshops and work with some amazing individuals all suffering from dementia and other conditions who were always present in the moment doing what they could and participating with enthusiam and encouragement, and it has given me an insight into the power of art and creativity on our health and wellbeing. 

When I think back now to those years when mum looked after dad I have come to terms with knowing I did what I knew how to do at the time, there is no point becoming stuck in what I didn’t do as the most import think to do is focus on what I can do now, and the nuggets that present themselves on a daily basis.

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  

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.

F is for Fear

When looking at my family health history I find myself considering my health own and mortality .  Both grandmas had dementia but died of unrelated conditions, My father died from a muscle wasting disease at 63, mum has dementia, there is high blood pressure, diabetes and cancer in other family members.  The older you get there are more muscles that you realise you had - because they all ache!

I understand it doesn’t necessarily mean that I will be beset with ill health, but I do wonder why after 40 years I suddently am intolerant to wheat and dairy.  We can begin to walk around in fear as we wait for something to happen to us.  Fear is such a negative emotion and instead I try and focus on the things that I can do and the impact that I can make today!

I am inspired by those who live independent to a ripe old age, check out Alice Herz Sommer   http://www.youtube.com/watch?v=KTwnlW5lscg  She is 108 years old and has maintained all her faculties, plays the piano and has a good outlook on life.

Even with dementia I have faith that with the right support mum has a good standard of health and well being, and for myself I will make every effort to take the necessary breaks and look after my own health.  We cannot fear what we don’t know or what hasn’t happened.  Life brings so many opportunities and I guess I have the opportunity to spend quality time with mum and cherish these times.

Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, 

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.

E is for Enough

There are distinct stages to mums illness where I’ve thought I can’t take this anymore - I have had enough,  I don’t want to do it.  These have been times where changes have occurred and what worked yesterday doesn't work today and I can't seem to say or do the right thing.  

What has maintained from the outset of the illness is mums enthusiasm and willingness to try and you know there is usually a good reason for her change in mood, you just have to work out what it could be.  More often than not walking away for a few moments and coming back as if there was never an issue and saying 'would you like a cup of tea?' changes her mood.

Sometimes though I have to sit in the feeling of it being enough because it's how I feel and we have to deal with these feelings. It is natural to feel this way and you mustn't feel guilty.  You have to recognise where it's time to ask for help and not try (as tempting as it may be) to carry the weight of it all on your shoulders.

Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant

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.

D is for Dependant

When I used to think of dependant I never thought anyone other than my son would be dependent on me, and then as they grow up they need you less (or that's the idea!)  Sekani was at an age when he really needed me around when my mother became one of my dependants.  As mum’s condition worsened she wasn’t able to be on her own for extended periods of time and I had to make the hard choice of teaching him to become less dependent on me before he was ready. His response would be 'why do you always have to be the one to stay?' my explanations to him went hand in hand with 'we will do something tomorrow' or at the weekend and would more often than not involve doing things around mums needs.  It meant that we would all have quality time together, I've shed a lot of tears, but I think that he has a better relationship with his Gran-gran for it.  

Her needs have increased, and my son's needs have changed he needs me in a different way now.  While we know that mum cannot look after herself we do pray for miracles and I remind myself of all the times she picked me up when I fell, soothed a worried heart, made my favourite food to cheer me up or get me that 'must have' gift that as a teenager!

I often wonder if she thinks as it in terms of what she cannot do, or finds comfort that she is being treated and loved in the same way she would do if the tables were turned.

C is for Carer

There is nothing that really prepares you to be a carer.  I obviously learnt to take care of my son, but another adult is a whole different ball game.  I never saw my grandparents being cared for and by the time my father got ill I had moved home so was never directly involved in his care.  When he got really ill  dad became bed ridden I do wonder what I thought about my mothers experience and why I wasn’t around to help out more, she didn’t have any of the support that I now have she did it on her own for over 5 years. 

Now as mums main carer, my time is spent sorting out every aspect of her life, making sure that she maintains a level of independence and making sure she has balanced meals, medication, appointments, bills and everything in between.  It can be all consuming at times as mum needs 24 hour care and my life fits around her needs.  Sometimes you think you've got it all together and the next all it takes is one small thing that you would probably shake off and it totally devastates you, and you wonder when it will all end.

One thing that has been important is maintaining my own identity in all of this, which can be hard when you’ve not had any sleep, mum has been wandering from room to room, tired but thinking its morning and everyone should be up.  Being a carer really makes you think of your own life and how fragile it can be, not wanting to be dependent on others and maintaining your own health.  I have found that my involvement in art has been the one key activity that allow a means for expression, and gives me the space I need to unwind and in turn get up and face another day.  

Art is very therapeutic and I encourage mum to express her creativity whenever possible, and this in turn helps her mood and overall well-being.

 

Here is mum at an art session at her local day centre

Before you go - Check out the Art Resource Hub for FREE online creative courses that will impact on your health and wellbeing and help you stay creative.

B is for Behaviour

We didn’t notice any changes in mums behaviour to begin with, it came slowly over a period of time.

Dad had passed away in 1992 and after a while everyone just got on with their lives and we assumed that mum got on with her routines without us knowing what they really were.  We assumed that she had a social life and activities that she participating in.  I remember ringing her up several times and asking her if she wanted to come to my house, she said she was busy and had work to do around the house.  In hindsight I think that she may have been depressed and felt more comfortable in familiar surroundings.  When we had our usual Sunday get together she would always make a remark about being on her own when everyone left, and you wanted to stay but the kids had to go to school the next day, so you parked those uneasy feelings that would creep up on you...

It was hard to understand why mum couldn’t remember certain things or that she had mislaid things and in the beginning it felt like she was putting it on for attention.   As the time passed we realised that something was wrong.  We have had to adjust to increase in decline that mum deals with on a daily basis and make room enabling her to have as good a quality of life as possible.  My mother’s behaviour is being changed by the disease we are being changed as we learn how to best communicate, and also find new levels of the relationship.

How do we relate to those who have differences, do we accept, ignore or try to accommodate these differences?  Sometimes we need to also look at our own behaviour and see if it allows others to really express who they were called to be.  

A is for Alzheimers

Today begins the month long A-Z blog challenge,  I will be writing about something that has been very close to my heart and in some cases still raw as it is an experience I face every day.

My topic for the challenge is Alzheimers and my experience being a carer for my mother Mavis who is 88 years and you will get to know more about her over the month.  She was diagnosed with having Alzheimers over 12 years ago and it is now in the severe stages.  When I first started my blog I shared in my post 'Journey of a Carer'

Alzheimers is the most commonly diagnosed form of dementia and the illness gets worse over time. Dementia describes a collection of symptoms including memory loss, loss of reasoning and communication skills and is an umbrella term to describe many other symptoms that occur when there is damage to particular parts of the brain.

There are so many emotions that you go through as a carer, and I believe the more we share our experiences the better placed those that want to be supportive and the healthcare professionals will be able to relate.  There needs to be an understanding of the impact that it can have on the life of the family as a whole and what it means to a generation of people increasingly suffering with the condition.  We also have to be aware of the individual suffering with the disease and how isolating it can become.  Statistics show that 1 in 3 of us either know someone who is directly effected by dementia or who is a carer.

As an artist I see the benefits that a creative activity can have on our health and wellbeing.  I currently use creativity in my role as a carer and share my experiences with those in healthcare settings.  I also run an Arts in Health network for anyone interested in finding out information about initiatives that are available, or want to connect with other artists in the healthcare setting. If you currently engaged in creative activities that impact on health it would be great to feature you in the network, so do let me know.

Over the course of the month you will gain an insight to my world as a carer, the one thing that has given clarity, peace and understanding is my faith and my creativity.  I do hope you join me for the rest of the month and over 1,400 other people as we take part in the A-Z Challenge it would be great to get your comments and feedback and I hope that you are inspired, encouraged on your virtual tour as you meet some great people.

Also check out the Art Resource Hub for a series of FREE courses and resources