Showing posts with label tips for carers. Show all posts
Showing posts with label tips for carers. Show all posts

Wednesday 19 June 2019

Podcast Episode 96 - Arts and Wellness






In today's show I share with you my work in the field of Arts and Health.

As a mixed media artist I work with a variety of mediums and tools to express myself in my work.  I completed my degree in Complimentary Therapy, at the University of Westminster specializing in Nutrition and Massage Therapy, and saw the benefits of improving diet and the use of different forms of massage and essential oils. I could see clearly the link between diet, health and well-being. Alongside this I painted and wrote about art and creativity, and wanted to further explore the impact of creative activities on our health and well-being.

Inspiration
My journey into Art and Health started to take shape after my mother was diagnosed with Alzheimer’s. I was making the transition to a self-employed artist and I was driven to look at meaningful ways that art could impact on others and enable me to share my passion. By chance I asked my mum if she wanted to do some art she would normally say no, this time asked what I wanted her to draw. I gave her a picture and paper and some art supplies and said, try this and she didn’t look back. I was shocked that an hour and a half later my mother was still engaged and enjoying drawing her version of the image I had given her.

As the years went by I gave my mum more and more creative things to do. I realized that Art could play a big part in working with those who had physical or mental health challenges, including those whose illness caused mental distress for themselves and those who cared for them. Art could impact and benefit people from all walks of life and act as a preventative measure.


My Mother Mavis enjoying her art activity

I started to do my own research and training, looking at ways to develop workshops that could impact on the health and well-being of the participants whether they presented with a health challenge or not. I ran art and creativity workshops for a special Dementia Day Care Center in London for those with varying degrees of Dementia and other conditions for over 3 years and alongside this presented on a local radio show talking about creativity and the positive health benefits that can be gained and I collaborated with other artists and spoke at seminars and conferences on the benefits of creative activity.

The Need for Research

There has been quite a lot of research done on the impact of the arts and health across the board especially in the UK and the USA, and wider afield not only visual art, but dance, theatre, music, storytelling and more;

  • The arts are being used in different health environments hospitals, homes, centers, waiting rooms where both for staff, visitors and patients were being impacted in a positive way, both as active and passive participants;
  • Stroke, Children’s, geriatric and cancer wards found that art and creative activities helped patients deal with the emotional stress that was a result of their illness and the proceeding isolation;
  • Art and colour is often used to design interior and public outdoor health spaces, across communities and there seem to be whole movement of people who could give positive feedback to the work they had been doing in the creative field;
  • It has been identified with providing solutions and as a means of prevention, to those who previously would have been prescribed antidepressants, or it has been shown as an outlet for people who are isolated or feel lonely;
  • Where arts and creative activity were being promoted in the local community it got individuals out of the house, and programs were developed which also impacted on their physical health and nutrition.
Art on Prescription?


I further enhanced my training with a series of courses that led me look at how to setup a social enterprise that supported, engaged and encouraged the community.  I also looked at the ways in which you could to use reminiscence in a creative way, and measure the impact of the work done.

I created a series of creative reminiscence programs that included music, art, and discussion in a relaxed atmosphere, and followed on not only working with those with dementia, but their carers and others working in a health care environment. I also had the opportunity to do a series of training seminars in France and Norway and give presentations on my work with the elderly in the UK. 


I was also involved in a project called Community Health Lab - ‘Art on Prescription’ with a remit to show how effective a creative activity could be on improving the lives of the ‘hard to reach’ communities. Included on the program was dance, movement, horticulture and art therapy. We received funding to work with artists and creatives across the board to deliver a program where individuals could either self-refer or be referred by their GP to take part in a series of 6 workshops.

We were able to show through monitoring their blood pressure, and weight, and a general mental health questionnaire at the beginning and end of the program that taking part in the workshops had a specific impact on the participant’s health and well-being and they also showed improvement in any feelings of isolation. Art Therapists have been recognized by the NHS and work in all areas of health, combined with a large number of artists who use art as a therapeutic tool.

Realityarts – Creativity for Change


I set up Realityarts – Creativity for Change, which seeks to engage, encourage and inspire individuals in the use of art and creativity and bring about change in their health. I feel that it is important that we connect and impact communities with inter-generational arts projects so we get people across generations sharing their experience and learning from each other. I am passionate about creativity, and getting people involved in some way, looking at ways in which we can use art to communicate, tell our stories and share these stories that tell of our own journeys.

Art as a therapeutic tool

I believe that the creative process is very important and everyone one can get involved in some way – even if it is just to visit an art exhibition or go and see a play or open air event. When we have access to the arts across all levels of society we can see the positive impact on communities and lives, we hear about the stories and traditions, the old wives tales and the ‘stories ‘granny’ used to tell’. It helps bring together the different generations of a community, it passes on the history and is captured through the creative activity.

Developing art programs can have several benefits:

· Arts programs have powerful results that can have a positive effect on physical health, mental health, and it also helps improve social functioning.

· Arts and Creativity activity is important for our development. For the older adults it is vitally important that there is a continued emphasis on helping them to keep active and mentally stimulated.

· Involvement in programs that calls on older adults to participate, sharing their knowledge, wisdom and stories has been shown to impact on their health and encourages older adults in maintaining their independence and decrease feelings of depression and loneliness. 

Reminiscence is a way of calling the past to mind, particularly positive events, people, or places, to improve older adults' outlook on the present by increasing socialization and self-esteem, improving communication skills, and reducing isolation and anxiety. Listening to music and telling stories stimulate participants to resurrect these memories and focus on what remains. 

The arts contribute to communicating, building a sense of identity, and strengthening social networks in communities.
The arts help create elder-friendly communities in which older adults are able to thrive and function regardless of their ability.

Art in the Environment

There are so many ways in which art and creativity can impact on the health of an individual not just in an art session, but also within the environment. Health organisations and departments in the UK continually look at ways to improve the working environment that also benefits the patients with initiatives such as Paintings in Hospitals, Hospital waiting area exhibitions, and music recitals all which go to lifting up the spirits of those who work or who are being treated. There are many other initiatives that have been promoted.

I currently run an online network for NHS organisations who want to connect with other like-minded organisations developing work in Arts and Health. I work online with other artists creating and developing art workshops which look at the way in which we can encourage the community, using art, art journalling, and art as a therapeutic tool to working on a deeper level that will improve health and well-being. I also run art and creativity workshops and seminars helping organisation’s develop their own programs for staff and the local community and look at the impact of art and creativity on our health. I also create videos of art processes, health, gardening on my YouTube channel. This has also extended over social media where I work with artists and small businesses and offer consultations helping them to develop creative ways to improve their social media presence. 


I have worked with the the Barbados Alzheimer’s Association, giving talks at their conferences, Seminars and Participation program about my role as a carer to those affected by dementia and those working in health care and how you can use creative activities.  You need to equip yourself with information and knowledge, more and more people are affected - the whole community, and it is important to attend some of the sessions that are run and get involved in the work they are doing.

I would love you to be able to access more things without breaking the bank that you can use as a creative activity.  If you would like to work with me or looking for some encouragement to undertake your creative activity you can schedule 2 Free Sessions of  Creative Encouragement


Creative Encourager 
I would love to hear from you, what are you working on at the moment, where do you get your creative inspiration from.

Check out some of the links - Arts and Health NHS Network
Remember to book your free sessions for some Creative Encouragement and be on your way to an amazing creative adventure!
Stay blessed and be a blessing.

Tuesday 12 June 2018

Caring in Dementia - Part of you has to shut down


As I cared for my mother who is living with Dementia and is unable to look after herself I went through a range of emotions to deal with the situation.  The emotions included sadness, loss, guilt, anger and more.  There was no manual that could help me identify or avoid them and over the years I had to find ways to navigate the onslaught of emotions that at times came solo, but very often alternated at a moments notice and came all at once.  In the video below I share my thoughts on dealing with the emotions.




As I cared for my mother who is living with Dementia and is unable to look after herself I went through a range of emotions to deal with the situation.  The emotions included sadness, loss, guilt, anger and more.  There was no manual that could help me identify or avoid them and over the years I had to find ways to navigate the onslaught of emotions that at times came solo, but very often alternated at a moments notice and came all at once.

I think that most people have this 'emotional off switch' when dealing with stress on a recurring basis.  The switch becomes activated to enable them to cope with difficult situations and circumstances. 

What emotional areas have you shut down?

I found that over the 17 years of looking after mum and more recently since she has been in a home that I develop ways to deal with the situation to help me get through the day to day.  When you work in the care profession it is natural to access this 'emotional off switch' as they deal with sickness and death as a regular occurrence and it can sometimes come across as if they are cold and uncaring when dealing with a sensitive situation.

Flipping the Emotion Switch

I flipped the emotion switch when I began to care for mum and couldn't think about the impact of caring for her as her daughter or to the family while I cared for her.  I made sure that all her physical, and emotional needs were taken care of and didn't think about how I felt as her daughter as there were things to be done, I just got on with it.

Now she is in a home, my thoughts only rest on how she is being looked after, what I observe in the interactions with the staff and the residents and making sure that I notice any changes that may be taking place.  One of the worst emotions I had ever felt was walking away knowing that she couldn't do the same when she was ready and despite feeling sad I had to put on the brave, upbeat and cheerful face, but I wondered if I was able to fool mum.

Sharing your experience can really help


You don't really hear people talk about it, and two years ago I kept my feelings tightly on lock down.   The reality of it is that whilst I don't want mum to be in a home there isn't anything I can do at the moment to change this reality, so you have to decide how you come to terms with the thoughts of   abandonment, and all the other things that call you to trust that those who work in the care profession are there because they want to be, not just trying to make money. It calls for a certain level of trust and faith that she is surrounded by people who value life and are treating the elderly residents with love and care.

In the filing cabinet of the mind you put the emotions in a hidden file, and you don't ever call the file up to review, though you know you will have to some day, but for now you lock the door and swallow the key, otherwise you would cry every time you leave.  


How to open up?

How do you press the reset button?


Once you have flipped the switch and shut down those areas emotionally how to you reset?  This has been a question that I pondered on quite a bit.  For a long while I didn't want to think about it, let alone write about it, but at some point you have to acknowledge it and deal with it for your loved ones sake as well as your own.  I found recently that when I acknowledge the emotions and shared them that I heard from so many others who were going through or had gone through the same situation, I wasn't alone.   Some people shared their heart and thanked me for sharing mine, others felt I shouldn't be talking about the emotions in an open way.  I understand that some people are not comfortable discussing these things, and they may have to look at other ways they can come to terms with the issues they face.  


 You often feel isolated as a carer and you go it alone, soldiering along without realizing that when you shut down these areas it very so subtly begins to effect other areas of your life.  I felt as if my voice was being effected, like there was a giant lump in my throat and I couldn't express myself, and that is where you then begin to isolate yourself even more.  

Over the years gathering first hand experience I have been able to share what I have learnt and presented at conferences, seminars and workshops in England, France, Norway, Montserrat and Barbados about the Effects of Care on the Carer and the use of the Arts in Care.  I have spoken on the radio, barbados tv and had work in magazines  It has been a great honor to see that sharing my experience can help so many others in their walk.

Talking at the Allioagana Festival of the Word - Montserrat 

Barbados Alzheimer's Association Conference

The more I shared the practical side, the more people expressed support because it helped them talk about their situation.  It also helped non carers relate and empathize with those who are carers, finding ways that they too could offer help and look at strategies for creating a support network.

Carers Support Services

It is absolutely vital that carers have support systems in place that they can access to discuss what they are going through alongside meeting others who may have different methods for coping, there needs to be recognition of cultural differences and reaching those carers who would not normally use the services on offer.  Sharing your experience with those who relate stops you from permanently locking down the negative emotions that if internalized for an extended period will affect your health and well-being, so finding out about your local carers groups and activities for support is important.

Spending as much quality time as possible is the key

The Arts and Alternative therapies and more recently Garden Therapy have always been a go-to for me, and I have spent my time researching and developing different ways to not only help me but to give my mum a better quality of interaction, whether it be through massage, singing or playing music that she can relate to down to creating simple instruments and age appropriate toys and activities that she can relate to as she appreciates the interaction as well.

While shutting down certain emotions might help you in the short term you have to realize that it cannot be a permanent solution and will impact negatively on your health and well being over time.  Making sure that you have things in place along the way will help you find more balance to your situation.  Check out some of my previous posts HERE and HERE that might encourage you on your journey, and some creative activities HERE and HERE that you can check out.

If you want to support some of my initiatives to provide free online creative resources for those who are carers, perhaps you will consider joining me on Patreon, details to follow next week.

Stay blessed and be a blessing.

Listen to the podcast


Sunday 5 April 2015

Creative Dementia Arts Conference - 16th April 2015

Creative Dementia Arts, click for home.

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


Friday 31 October 2014

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.

Thursday 30 October 2014

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.

Wednesday 29 October 2014

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.

Tuesday 28 October 2014

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.

Monday 27 October 2014

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.

Saturday 25 October 2014

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.
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