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.

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.

Graze Box - What are you snacking on?

I saw an advert for a Graze box and though I’d try one for myself  The promotion is a free box with half price on the next box you receive.  Mine arrived in the post which was handy as I didn’t have to wait in. 

Their website was easy to navigate and make the choices of things that i would want in my box. There were two choices the nibble box which is what I brought or the snack box which is a bit larger.

For those of you who like to snack its a great way to eat snack size portions of food that are healthy for you rather than high fat, content foods that will make you feel sluggish and tired for the rest of the day. I had a great selection for my first box which included black pepper pistachios and vanilla mix which was a mixture of vanilla, dried cherries, pumpkin, sunflower and sesame seeds.  These two were my favourites and is the just the thing you need for a mid morning snack!

The only criticism that I found was once you opened a pack if you didn’t want to eat it all at once you couldn’t seal it back, so a lid that seals would have been great and then I could have popped it in my bag!

Making your on line selection is easy and I was able to type the things that I wanted to try or deselect items that I never wanted to try and out of your choices, they send you a different selection each week.  They have a large selection to choose from, my favourites are the seeds, nuts and exotic fruit selection, but there have dips, breads, you name it!

The box and its contents are recyclable so you could try doing a creative project, which is what I will do and let you see the results.  Until then happy grazing!

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.

365 Days of Colour - Flower for the Day 293 - 299

Day 293

 

Reflection 

What is the one thing you always wanted 

Quote 

Art is the flower of life and, as seed, it gives back life. ...Remy de Gourmont 

Scripture 

So that we confidently say, ‘The Lord is my helper; I will not be afraid.  What shall man do to me?’  Hebrews 13:6

Day 294

Reflection 

Do not hold on to anger or bitterness, they will destroy you. 

Quote 

Grace, not will power, is what ultimately empowers us to live loving lives. Creativity, both in what spawns within the artist and the artifact, can be a vital source of that grace. ...Rev. Ron Rolheiser

Scripture 

Righteous are you O Lord, and your laws are right.  Your promises have been thoroughly tested, and your servant loves them.  Psalm 119:137, 140 

Day 295

Reflection 

It’s up to you!  

Quote 

Art must touch our lives, our fears and cares  evoke our dreams and give hope to the darkness...Frederick Hart 

Scripture 

God has not given us a spirit of timidity, but of power an love an discipline.  2 Timothy 1:7 

Day 296

Reflection 

You have the ability to step out, and soar....  

Quote 

Those rare souls whose spirit gets magically into the hearts of men leave behind them something real and warmly personal… the grace of a fine spirit pervades the places through which it has passed, like the haunting loveliness of mignonette....James Thurber  

Scripture 

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort; who comforts us in all our afflictions...

2 Corinthians 1:3-4

Day 297

Reflection 

You light up the room, don’t hide.... 

Quote 

Art is about mystery....Marisol 

Scripture 

All the days ordained for me were written in your book before one of them came to be.  Psalm 139:16 

Day 298

Reflection 

All things are possible.....do you believe? 

Quote 

Sometimes when you finish a painting, you look at it and it looks all right and that’s a touch of grace. ...Jack Tworkov

Scripture 

The effectual fervent prayer of a righteous man availeth much. James 5:16

Day 299

Reflection 

There is a time for everything.... 

Quote 

I don’t see why we ever think of what others think of what we do- no matter who they are. Isn’t it enough just to express yourself? ...Georgia O’Keefe 

Scripture 

For the Lord your God is He that goeth with you, to fight for you against your enemies, to save you.  Deuteronomy 20:4

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