Stepping Out Challenge - Day 9 - Dementia A Carers Story

Welcome to today's post, I am taking part in a 31 day blog challenge where I post everyday in October.  I love creating challenges for myself and joining ones by others.  My challenge for the rest of the month is to reflect on some of the series I created for myself and inspiration that I have taken away.

Listen to the Podcast

Today I am going to be talking about Dementia and being a Carer.  I did a series called A - Z of Dementia - A Carers Story

It is funny talking about a challenge within a challenge, but the A-Z Challenge that I did in 2012 was probably the first time I really thought about my situation as a carer and what it meant to me seeing my mother living with Dementia.  I never thought about myself in the midst of it or considered how I felt, but knew I had a job to do and so set to doing it the best way I knew how.

A is for Alzheimer’s, 

There was no emotional manual, the dementia caught us off guard, there was no calling card and preparation, but one day things just seemed different, mum acting weird, not glaringly but saying things that made us wonder briefly, but we never twigged, just brushed it off not daring to thing that there may be something wrong.

B is for Behaviour, 

I remember going up to her local chemist to buy something for mum and the pharmacist handed me a shopping bag that mum had forgotten in there Friday, it was now Tuesday and I looked into the bag I could see among the shopping a pint of milk that had now curdled.  I wondered why he didn't put the milk in the fridge or even get in contact as they had her address.

C is for Carer, 

In hindsight there were many people on the periphery who noted things, saw things that we were too close to see and never alerted the family and just watched things unfold as if watching a reality tv show and we were the unknowing participants.

D is for Dependant,

It was hard to deal with.  My son was around 5 at the time and when we would visit mum would say she wanted us to stay - she lived on her own, I didn't want leave her to but had to do the school run and go to work, I prayed that what ever was happening would just go away and mum would be safe.  But it didn't go away and I started staying with her as she couldn't be left on her own.  Mum lived about 45 minutes away from me.   I think I felt several things, responsible and annoyed, part of me didn't want to take on the carers role.  There were many inner casualties over the years as I tried to navigate being a carer and holding on to me.

E is for Enough, 

I began writing and it was an outlet for me, I had so much to say about things that I learnt that it was good to get things down on paper and begin to process.  What ever your situation is it is so important to find others that you can share your story with, as the inner stresses can lead to outward physical symptoms.

F is for Fear, 

Doing the A - Z challenge help me put things down that I thought not only helped me but could help others as well not just in my local area but from around the world I spoke to people who were in similar situations.

G is for Guilt

Check out some of the posts and think about your own story and experience, how can you share it and be a blessing to others who may learn something from what you share.

H is for Health Professionals, 

I will continue sharing tomorrow, and would love you to come back and spend some time.

I is forIdentity,

Are you or have you been a carer? What has your experience been like?  Are you the sort who will ask for help or do you do it all yourself?  We cannot carry the weight of the world ourselves and sometimes in your stepping out you have to ask for the help that you need. 

J is for Judgement

Tomorrow I will share the second part from my carers story.  I hope during this month you find some time to challenge the way you currently do things, be creative and stretch yourself.

Why not join me each day for the rest of October as we dive into to some exciting challenges and look at ways in which they can impact on your own life. 

I look forward to seeing you tomorrow, it is never too late to start! The main thing is to take one step at a time and do something that you find interesting.

Stay blessed and be a blessing.

Ps:  There are some resources and links below I will be sharing more books that might be able to help.:

Adorn it - http://bit.ly/AdorAT18

Dollar Tree - http://bit.ly/DolAT18

Blick - http://bit.ly/Blick18

Book Outlet - http://bit.ly/BOOKAT18

Stampington - http://bit.ly/STAAT18

C& T Publishing -  http://bit.ly/CNTPAT18

Dover - http://bit.ly/DOVPAT18

Craftsy Kits - http://bit.ly/CrafAT18

Amazon Store -  https://www.amazon.com/shop/realityarts

Craftsy Kits

Saving Yourself - When you feel like your disappearing

Saving Yourself When you feel like your disappearing addresses the need for us to make sure we think about our own health and well-being on a daily basis.

Have you ever found yourself doubting your own feelings and emotions, or that your feelings didn’t matter? Do you even know how you feel right now?  You sometimes hear people talk about how you should be feeling based on their own needs, but they never really ask you, and never seem to have the time to listen to what you might have to say.

It is easy to feel as if 'you' don't matter, you’re not used to shining the light on yourself and you really don't want to make a fuss when people don't acknowledge just how much you have done for them.

Lots of us go through this problem, we've spent years caring for others, whether it is our children, someone else’s children or we've cared for an elderly relative.  We often find it difficult to think of what it is that we do like and it seems as if we have slowly eroded who we thought we were.  Often not being able to answer the question 'what is your favorite......?'

I can totally relate as I found that when I was caring for my mother with dementia and when my son was little I often felt that I didn't know who I was any more.  I spent the majority of my time trying to cater for the needs of another that I didn't know what I wanted, or how I felt and it has been a long journey to rediscover the 'me' I know I can be.

I found that when I didn't have some 'me' time whether it was 5 minutes or 2 hours, this was when I was more likely to feel undervalued emotionally drained and stuck just longing to be rescued somehow!

The easiest way to ensure that this feeling of stuck-ness doesn't happen is finding that much needed time, even if it is 5 minutes you need to schedule it and put it in your diary.  Let others know that you are taking the time, set your watch and go do something creative.

I have 5 easy things that you can incorporate into your day you can do all 5 or just one and this will help you fit creativity into your day and jump start your creativity

1.  Write down your ideas, you know you have them.  Find yourself a set of index cards, or write in a journal and list them, things that you might want to do, try out, go see.  When you start writing things down it helps take you to the next step of putting them into action.  Dust out those corners of your mind and see how many you can come up with in 10 minutes – you can give yourself 10 minutes right?

2.  Identify all the things that you can do in a short space of time say 5 minutes for you, list them, and these are the things that you will take the time out to do when you have shorter pockets of time to spend on yourself.

3.  Take your time – whenever you schedule time for yourself focus on what it is that you are doing, don’t try and do a whole range of things, value you in that space at that moment and really enjoy spending time on you!

4.  Where can you go for inspiration?  Think of places you can go, it could initially be around your neighbourhood, the local park, a garden, you might be able to incorporate a once a week trip to a museum, or gallery.

5.  Try something new! Think about the art supplies that you have and try something different, you might use them in a different way, or try a new technique, just allow yourself to play.

Once you start giving yourself this much needed time you will find that you’re not so stressed, and you can breathe again.  You might even be able to hear the birdsong outside your window!

What one do you think you will try first?

If you would like to have more tips and encouragement sign up for my mailing list

Stay blessed and be a blessing

Amanda

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.