Creative Dementia Arts Conference - 16th April 2015

Creative Dementia Arts Network 

Conference 2015

The contribution of creative arts to building dementia friendly communities

I am so please to share that I have been asked to lead a workshop at the Creative Dementia Arts Conference this year, and share my experience in working with dementia sufferers and carers in the community at a one day conference organised by the Creative Dementia Arts Network in collaboration with Eminence Grise.

It is a great way to come together with others who not only work within the field but who also those who have direct experience of dementia, either as a carer or the one being cared for.

It is vitally important that we all arm ourselves with information and tips on how to help those who are affected. More and more people either have first hand knowledge of the effects of dementia as a carer or sufferer or know someone who is dealing with it, and has a dramatic effect on the community as a whole.

Who should attend? The conference will be of particular interest to people with dementia and their carers, artists, musicians, dancers, actors, poets, and staff and volunteers working for arts organisations, museums, galleries, libraries, theatres, local authority social services, the NHS, housing associations, care homes, nursing homes, academics, researchers, students and those working in government agencies and departments.
The conference is being held on

Thursday 16 April 2015 

9am - 4.30pm at

St Hugh’s College, 
Oxford, England, UK

If you want more information check 
out their website HERE

Gratitudes and Celebration Journal - Week 73 - Integrity

It has been a busy week of dealing with services that help with mum and it has not been an easy week.  I have found many people who work in healthcare that don't really care about the service user and the families that support them at all.  The very same people who need the care are the ones who worked every day of their lives and never took a day off sick, and these are the very men and women who are now the octogenarians who are being treated badly and seemingly thrown on the heap.  I have become frustrated at some of the actions and thoughts of the services that I have to deal with on mums behalf as their idea of care means leaving the elderly isolated and on their own.

Who Cares

I was told that it is alright for me to leave a 91 year old woman with severe dementia on her own at night, despite the fact that she cannot do anything for herself or discern when she is in danger.  I know that there are many elderly people who live on their own, but for the ones who are ill or frail appropriate measures need to be considered and put in place so that they can still feel like valued members of the community.  My mums borough has never recognize the need for support for night time care, I asked what would happen if she felt out of bed, which has happened as she wouldn't be found until the morning and I was told I should use the crash mat - which is supposed to be placed beside her bed, or what would happen if she got out of the flat and fell down the stairs - would she have to wait until morning to get help for that as well?

Regardless of how I feel about the role of carer, leaving my mum on her own was something we stopped doing since around 2004.  It has not been easy having to go backwards and forwards and the times that I had to console my son because he was missing me broke my heart.  But knowing that mum could walk out of the house and no one knows where she had gone is something we never want to relive again and my heart goes out to anyone who has been in this situation.

Creating problems and not finding solutions

The fact is regardless of the strides some councils have made it isn't enough.  The way that the elderly are treated and regarded is appalling especially if you happen to be frail or have an illness or disability.  Carers who shoulder a lot of the financial, physical and emotional burdens are not appreciated and those who work in the healthcare field are undervalued.  It would seem that they are brushed under the carpet until someone exposes mistreatment or someone dies then you have the politicians running around saying how shocking it all is and that their party will turn things around.

With millions of pounds of cuts being made in around the country the first services that were affected were the elderly and those with disabilities.  The staff at the center that my mum attends many of whom knew the service users were told they had to leave or face a pay cut, new staff were brought in either fresh out of University so they could pay them peanuts and felt undervalued to those who just didn't have a heart for the role in health care anymore, and didn't seem to like interacting.

The caring role over the years has taken a toll on my health and well-being, but I do it, not because I have to but because I want to.  There are times when exhausted I cry out that I don't want to do it any more, and I know that at some point I am going to have to make a decision about where mum is cared for, but knowing and doing the right thing for mum out weighs anything that I am going through myself. 

I am grateful and celebrate the creative tools that are available to me that enable me to express how I feel, to have a voice and can find a place of peace and comfort.

Share one thing that you are grateful for, stay blessed and be a blessing.

I am on a journey and hope you come along and join me. Why not start your own journal, keep it as simple or complex as you wish, but do something!

Reflections and Understandings - Tips for Carers

When I decided to be part of the Ultimate Blog Challenge I didn't think about what I had on in terms of work and responsibilities, I just jumped in and had to fit things around writing the posts.  

From Gratitude's Journal - Your life deserves your attention

It wasn't easy and every day I had to encourage myself to share a bit more than I was used to, though I am glad I took the step as there were things I needed to encourage within myself and with each post brought me to a greater understanding of my role as a carer.  I have been encouraged to step up in my creativity, to let go of those things that I can't change, and to make room for the blessings that come when you treat yourself and others with kindness.

Time to recharge those batteries!

So many thoughts have come out of sharing, and so many ideas.  I hope at some point to provide suggestion of creative activities that you can do for relaxation for yourself and with the person you care for all very easy to organize and can fit into your daily schedule.  As a mixed media artist I love making things and have been sharing my art and creativity throughout the posts.  

In writing the posts as part of the challenge, I have gained new insights, grown, shed a few tears and dusted myself off and got up again.  The main thing that stands out for me is about choice we always have a choice in the way we respond, whether we accept things the way they are, or if we take steps for a change.

We can choose to be upset about the one we are caring for and what they can’t do and how much they have changed, or we can choose to celebrate that they have a life, they can breathe or that they woke up this morning and are living life the best possible way with a circle of people that love them and only want the best.

Gratitudes and Celebration Journal - Dream

I choose to be true to myself to love myself and give myself space, to know when I need a break and time out, and to know when I need to go at full throttle, to ask for help when I need it and be open about my role as a carer.  I choose to love my mum a best I can and not feel guilty about not being perfect, and I choose to love me and show love to others by trying to be a blessing in their lives.  

You Are....

For now, take a look back over your past week, or month, what lessons, moments for reflection and insights have you come away with.  If you can put it down in a journal, create a piece of art and be encouraged!

Bless you for stopping by, do leave a comment on how the posts have informed and encouraged you.

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC - Day 31 - Celebrate your life

Art Work - Amanda Trought - Realityarts

Welcome to day 31 and the final day of 'Tips for Carers' in the Ultimate Blog Challenge

Each day I have brought you a different aspect of my experience as a carer, to inform you, to bless you and give you some pointers if you are going into the role, or have been in it for a while and just need some new ideas.  There is no ‘one size fits all’ but it is important for us to share our experiences with each other, and share those things about our lives that make us unique.

Each post hopefully allowed you to shine new light into your situation and see it differently.  I hoped you tried to some of the suggestions or altered them to suit your needs.  The one thing I remind myself of is that life is precious and we have been paced here for a purpose. 

As I look after my mum I try not to loose sight of who and I celebrate the life I have knowing that I can make an impact.  In life we have to make the most of what I can do, knowing each day brings along the gifts of life, celebrating those things that we are grateful for.  We each have something that is special within us and whilst we are all in different circumstances and situations we have to find the strength to be more than the role defines. 

I recommend that you make sure that you make the most of your time, eat well, get rid of those things that are toxic in your life, and try and give the best of yourself, enabling your light to shine on those around you, especially the one you are caring for.  Celebrate and love yourself and If you can find the joy, peace, hope and love in your current circumstances, each day will be a miracle.   

As a carer, I don’t allow myself to be defined by the name,  As I work my way through the role   sharing my experiences and building relationships, I seek help, I ask, and manage to get through each day with a story to tell it is not an easy road, but it can be fulfilling.   You are precious, you are loved, and you are appreciated for everything you do.

For now, take a moment to celebrate your life, take time to unearth some of those dreams that were hidden and do one thing that will be a blessing to your life and the one you are caring for.

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC - Day 30 - Give yourself permission to breath - Tips for Carers

Give yourself permission to breath.

It starts with you, from the time you wake up in the morning the hustle and bustle of the day yet to begin.  You make a hundred and one decisions, do the daily chores, look after children and then you have your caring role.  You do whatever needs to be done each and every day, day in and day out and you don’t stop. 

Take a breather....

Sometimes it is hard to see how you can fit anything else into an already busy schedule, but you do.  But along with space and time you cannot fit everything in all at once and once again need to place some strategies for dealing with the load because at some point if you keep going at the same rate you will burn out and then you won’t be any use to anyone.

You have to realistically look at what you have on your plate, setting the tone of your day where possible and look at ways in which some of the burden can be lifted off.  It starts with you taking what seems like a ‘time out’ and begin to breath, to stop and get off the merry go round of appointments, meetings, long nights and take a breath - that thing that we take for granted. 

Take that time out

Taking a breath for some might be that walk, it might be coffee with a friend, or going to an art shop or it might be sitting still 5 minutes letting the sun hit your face as you close your eyes and drift off to that ideal place where everything is alright. 

Listen

I regularly spend time meditating and praying, thinking about a space where my mind can be still, where I can think and just listen to my breath, to the sound of the birds or the sound of children’s laughter in the distance.  I am giving myself permission to take time out just to breath.

For now, every day spend 5 minutes with your eyes closed listening to your own breath, hearing the sound of your home, the noises outside to that place where all is well and just listen.

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC Day 29 - Long Term Plans, Tips for Carers

Thinking about the future – Long term plans

Every now and then, I think about what is going to happen to mum as the dementia worsens.  You can’t help think about it, and at some stage you have to address it.   I wonder how long she has with us, ashamed at the very thought and feeling guilty thinking about myself and how long I would be in this role.  I think about the other ailments that silent creep up and one day we find out that we have to make adjustments for them as well. 

Adaptations

I recently moved mum into a flat that has been adapted for someone who uses a wheelchair, we were struggling at her old home with the bathroom and getting in and out with her, and the new flat has a wet room with shower so it has eased the stress that we used to have in the morning.  Additionally with the wheelchair we were having carry it up and down the stairs every day, and with the new flat there is a lift.  I have been mindful to start to anticipate some of her needs that will arise.  Rather than wait for things to happen, I have tried to put things in place before they are needed, but also I have been trying to maintain mums health by giving her nutrient rich foods, she has been enjoying the smoothies that I have made from the nutri bullet.

That said, some hard questions will need to be answered even asked and there are things that we are going to have to face.  It helps if you can where possible put things in place that will benefit your loved one.  With mum, using a wheel chair doesn't mean that we don’t encourage her to walk, and we are trying to maintain her health as much as possible.  For some, as their loved ones get sicker they are faced with 

the question ‘do we put them into a home’  I have thought about it but knowing what I’ve seen from exposes of homes and what you have read in the paper, I don’t think that mum would survive longer than 6 months if that.  When mum went into a respite home while I was away on holiday she walked in when I took her in and had to have a wheel chair out, she could barely hold herself up and that was just after a 2 week stay.  I am sure not all homes have the same effect on its clients, but that is my experience.

 

Essentially you have to start to think about how their illness will progress and what will happen if you were no longer able to physically care for your loved one.  This is where the support network, family and friends come in.  What you do today will have an impact on the outcome of tomorrow.

For now take a moment to think about your current situation, and what additional things could be put in place to further support you in the long term before they happen.

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC - Day 28 - Each Day is a Gift - Make it special, Tips for Carers

Make each day special, each day is a gift

Each and every day that we can get up and breathe in fresh air, see another sunrise and sunset is special, as well as connecting with loved ones and exploring the life we have been given this is special.  Whatever our current circumstances, we are able to enjoy at least one thing in our lives, and even if you are not grateful for what you currently have remember that there is always someone worse off than you.

When you give it some thought and think about what you do have you will see that there is someone who doesn't have all the resources that you have or the opportunities and probably a host of other things, and if you go wider, there are a large proportion of the world that don’t have access to clean running water, or food or a place to lay their head.  They don’t have and will never have most of the other things that you have and will on a daily basis take for granted and even get complacent over.  Yet those that do not have are making the most of what they do have, they are struggling and living from day to day, and we have a responsibility to help and impact the lives of so many around the world in the simplest of ways – but that is for another post. 

I often worry that mum is hating her life right now, thinking about all the things that she use to do that she now can’t do.  At times I find myself going into automatic mode when helping her to do something, of course I will help her cause she can’t do it for herself, of course I will because she is my mum, but then in the midst of me helping her do something you would expect to do yourself she says ‘Thank you’.

She says it with gratitude, she says it because she is grateful for the help, and I think even more so grateful for being alive and able to enjoy what may seem limited to others, but to her it’s a life worth living.  She may not feel that way all the time, who does, but generally she has found a way to still smile and laugh at life.  There are still things that make her chuckle, and what I try not to forget is how precious this moment is.  This day that we have been given is unique and I have the choice to celebrate it and try and be all that I can be today, for tomorrow is another day.  I can choose to be present in my life or I can choose to worry about all the things that are not happening or that I do not have. 

I choose to bring joy into my home and see the wonders that are around me, and the opportunity to be able to make a difference today.

For now think about those little things that bring joy into your home.  Look at the gifts that you have been blessed with among what look like ashes and celebrate those gifts.

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC - Day 27, Don't Sweat the Small Stuff (keeping your perspective) - Tips for Carers

Don’t sweat the small stuff, keep your perspective

Throughout the weeks we have been looking at different areas of the carer’s role and things you can do to make it work better for your health and well-being, I hope that you have found some of the ideas helpful and it would be great to hear what you are putting into practice in your own life.

Where has the time gone?

‘If it is not broke, then don’t fix it’ or ‘don’t try to reinvent the wheel’ are two sayings that I remind myself of daily because there are so many things out of our control and that can send you on a spiral of self-doubt, when you finally come back to yourself and out of the rabbit hole you find that you’ve missed out on a large chunk of your life.

In your caring role you will also come across situations and events that arise and impact negatively on your role, or you might meet people who are difficult and unhelpful, you have got to keep going. The bureaucracy that you will face as a carer can be hard, but for every 2 unhelpful people, there is someone who genuinely wants to be of assistance or give you the correct information. I found that many times over the years and at times I just had to come at it from a different point of view, wait a few days and then approach it again.

Dealing with the day to day

Even dealing with the day to day things could be an issue where your loved one refuses to do something quite simple like change their clothes for bed at night time. If you have been used to doing things in a set way then for them to decided not to change their clothes can be an issue. When it happened with my mum she just point blankly refused to change into her night clothes and no cajoling or persuading would make her change her might. I began to get upset as this was totally unheard of - sleeping in your day clothes! I couldn’t work out why she would do this to me. 

Then something clicked, it had meant more to me than it did to her, the clothes were just clothes to her, she felt comfortable in the clothes she had on and didn’t want to take them off for her it represented making her own decisions and being independent, and here was her daughter ordering her about in her own home. I realised that even though I was trying and keep to a system, changing the clothes and doing things that she normally would do helped me to feel that we were in control of dementia, and represented order to me, dementia is not a disease of order. 

Taking a step back

I had to step back and stop stressing both her and myself out at night and just let her sleep in the clothes if she wished knowing that she would be changing her clothes come morning. This gave a sense of peace and it was no longer an issue, but it also meant that possible changes in the way she perceived things were taking place and there would be other things that would come up that needed to be dealt with from a different perspective, I had to let it go of how I thought things should go, and make room for the things that really mattered.

For now what areas of your life and your role as a carer could be rearrange to remove the stress that can sometimes crop up and what can you let go of?

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC Day 26 - Dealing with the loss - Tips for Carers

Dealing with the Loss

Welcome to day 26, How do you or have you dealt with loss, and what understanding can come from it?  

When we lose a loved one, it is hard to believe that they are gone, they were there one day and then the next they are not.  They go suddenly or they could go after having been ill for a while and you watch them drift away from you.  I experienced both types, an emptiness resides within you and there isn't a day that goes by when you don’t think of them, you go over thoughts, things you could have said, memories, laughter, I would trade it for another day spent with them.

In the space of 3 years, I lost my best friend, Barbara to a brain hemorrhage, and my brother Robert to Myeloma Cancer.  I often feel that in both relationships with them there were so many things that I took for granted never giving a thought that I would possibly go through days like this.

At times I get that feeling of loss when I am with my mum, because she no longer quite remembers who I am.  She says my name as if she is referring to someone else that she knows and never addresses me as Amanda.  She can’t tell me of her memories of me as a child or the motherhood pearls of wisdom gained through experience.  This loss is different isn't it, she is still here, still breathing, interacting in her own way.

As I watched videos of mum in the early days of the dementia, I see that she was be so outgoing – much more than when we were children and we gained a different side to her personality.  She was always up for doing something new and had an adventurous spirit.  She laughed more, danced more and during this time she talked a lot about dad, sharing those tales of their first meeting.  Mum helped me deal with the loss of my dad passing even after all those years, and she talked about him all the time, talking about where and when they met and her eyes would light up as she told the story, it was great to see, this kept the memories alive and helped to focus on the good times. I realized that I took her for granted even then, thinking that she would never get any worse not seeing the corners that she was turning in her mind as the dementia took hold.

The biggest lesson that I learn about loss is that you must make the most of all the relationships you have, don’t wait another day to tell someone that you love them, or call someone up that you were thinking about.  We never know when we will lose those nearest and dearest to us and we have to make the most of them while they are around.

For now, recognize that there will be many stages that you will need to deal with and you need to take it one day at a time valuing each and every moment.  Don’t take any of your relationships for granted.

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC - Day 25 - When Fear Strikes - Tips for Carers

Welcome to today's post, I have been stretching myself with writing these posts as I am still in some of the situations and the writing has not only been therapeutic but it is helping me to see different sides to my role as a carer.

Art from my Art Journals

When I look back I am amazed I have come this far, and that mum is a well as she can be.  I had many times when I wondered how long she actually had left and would start to stress over what needed to be done and how I felt about the matter.  Sometimes it can feels as if my whole life as been taken over by my role as her carer, and then when it stops there will be a big whole waiting to be filled.  

Fear of what is going to happen, what might happen and what could happen are all things that at some time go through your mind and you worry about.  For a long time I didn't want to ask for help as I thought I would be seen as weak and unable to cope 'I should be able to do this on my own' I thought, I was upset that I couldn't do it all, and then when I began to show the signs of stress the fear focused around whether the social workers would come and take mum and put her into a home against our wishes.  I worried about my own health and the long term affect of caring in isolation, If you don't have that support network and outlets that I talked about in previous posts, you are at risk yourself and your health could suffer.

Fear is something that can immobilize you and can cause you to spin round in despair, or it can launch you in the direction of taking action, you have to identify the source of the fear and then take steps so that the fear does not manipulate you.

I learnt over time to take things in my stride, deciding that there were going to be many things that were out of my control and the only thing that I could control was my response.  I can make decisions about what I do based on the situation presented in front of me.  If I acted out of fear then I would be tossed around from one decision to the next not knowing which solution would be for the best.  When I let go of the fear I was able to see the situation and options from more than one side.  So while you might not always able to make a difference to the consequence, you can be in control of how you get there though your actions and your own strengths and limitations.  

I constantly lean on my faith and pressing in, reach for the finish line.  I know that what presents itself isn't necessarily what it really looked like and the saying FEAR = False Expectations Appearing Real is so true.  If I show fear in my role as a carer and what I have to do, then I have to imagine what my mum must be feeling and then that is a whole different spiral.  The thing that I always come back to is looking at how I can express what I am feeling, learn to articulate it and by holding the mirror up to fear calling it out by its name and sending it on its way!

For now recognize that you will be afraid at times but identify where those fears come from and work through them, you are already doing a good job.

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.

UBC - Day 24 - Support Network - Tips for Carers

Thank you for joining me for another day of Tips for Carers we welcome day 24.

Valerie and Laura help me celebrate my birthday

When caring for a loved one it is important to build a support network that you can call on, a group of people that can be there for you each with their different functions depending on how much time they can give.  No man is an island and not meant to go through this alone,  they say it takes a village to raise a child and I think that it takes a community to care for their elders.

Mum beats Sekani at table tennis

My good friend Valerie reminded me recently that friendship means that you can call on each other in the difficult times and as a friend if I needed her to sit with mum then she would gladly be there for me as should all friends and the feeling is mutual.  Both Valerie and Laura have been there for me and mum.

The problems arise when you are afraid to ask for help for someone to give you a break or a night to catch up with some sleep.  If you don't ask, you will never know, they might even say yes!  I think that generally most people want to help but don't know what to do, They look at you and think you have it all together, and you therefore just have to be specific about the help you need.  People cannot yet mind read and don't want to assume what type of help you need, which can sometimes be as simple as just sitting with your loved one for an hour to give you a break or stopping to have a coffee with you so that you can get some conversation.

Mum at a local church function

As you connect with a local carers group you will find a network of people that know what emotions and difficulties you go through in your caring role, and is a resource that you should make sure you use.  What are the kids doing? You can also get the children involved by sharing your memories with them and in turn get them to talk about their day or time at school with the one you are caring for, there may be something that you used to do as a child that the kids can relate to.  There are many activities that you can have ready for those who come round to visit and have some interaction with the one you are caring for, such as looking through photos, organising draws, and working together on a craft activity.  These types of activities are great for those times when people come to visit, and for some they need to feel that they are doing something practical when they visit.

Having that support network prevents feeling isolated for both you and the one you are caring for.

For now, think of 5 people friends, family and neighbors you can ask for assistance and who can be part of your support network.  If we all try and help each other we can bring back a sense of a community. 

You can also click on the 'Celebrating life' image to be taken to the rest of the posts from the Journey of a Carer.