K is for Knowledge

What do they really know about dementia?...., The carers are becoming the professionals dealing not only with the emotional aspects but the physical, and psychological day in and out of the role, their knowledge and understanding increases, but they don't have the space to share...

I have come across many service providers whose work impacts on the elderly and carers that haven’t had any training in dementia care.  In my own role I have had to learn to interpret my mothers every action from why she is doing something that seems irrational to what she could possibly be trying to communicate, on top of ensuring she has a good quality of life. This has taken time, a lot of reflection and asking myself how would I feel if it were me in her position..!.

More and more organisations are consulting with carers getting them to share their experience with health care professionals.  I am currently involved in delivering workshops to students who are training to be social workers and helping them to not only understand but relate to the role of the carer - I have been able to develop a series of talks using creative activities. I think that it is vital for the carer as well as those who have to interact with them to have a basis for understanding just how complex the role can be, and ensure that there are opportunities for sharing experiences and increased dialogue that can only bring about positive change.

Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

J is for Judgement

I hated the thought of admitting I was finding hard to cope with my mums increasing memory loss, with a young son who didn’t understand why his mum had to stay at Grans practically 5 nights a week and the stress that it put on my own health.  I felt if I really admitted that I needed help that it was a sign of weakness...I should be able to look after my family after all!

What I realised as my experience of the illness grew was that despite what anyone thought  it wasn’t a sign of weakness admitting that I was finding it hard to carry on as it was.  The help was there you had to know how to shout loud enough and often enough and then it came in drips and drabs, but you had to keep shouting to let your voice be heard.

You also had to deal with the 'one label fits all' – as a carer it is hard to have a life outside of your role, your role defines you and when health professionals see you they don’t often have the time to see the life behind the tag of  'carer', what the person did or the life they had before they had to take on the role.  It's one of the things we have to guard against judging the situation without finding out all the facts and most of all we have to guard against the judgements we can make against ourselves.

Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is for Identity

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

I is for Identity

Holding on to your identity is important when you become a carer otherwise you can loose yourself in the role. We have so many lables within society that the true essence of who you are becomes a distant memory. There was a time in the early years of mums illness that I felt like the more I did for my mum the more I lost a piece of myself,  and was totally consumed.  It reminded me of the fragility of life, I knew that I had to hold on to who I was.

Growing up I was looking forward to relating to my mum as a mother myself, going to her for advice and sharing the joy of watching my children – her grandchildren grow up.  As a carer you loose your identity in society, the cared for have carers - an entity in themselves and many no longer have family members around.  Communities fragmented and the extended family becomes devalued and a thing of the past as the elderly are seen as a burdon, rather than filled with wisdom, memories and insight.

I found separating the roles helps and enables me to still enjoy my mothers company despite how dependant she becomes.

Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

H is for Health Professionals

Since becoming a carer I deal with a wide variety of health professionals.  The journey has been like a walking through a maze with different routes and hoops to jump and never ending forms to complete whenever you need to make a request.  Every year the policies change and new procedures developed - new roads to venture down, mountains to climb and further cuts to services that impact on carers and those they care for.

I have met those who really want to assist you but their hands are tied by beaurocracy and according the form that took two hours to complete you didn’t score enough points even though they can see that there is a need.  They will actively look for solutions to the problems.

I have also come across those who as far as they are concerned putting mum in a home is the best option giving them one less client to worry about.  I gave up trying to convince the social worker who suggested this. I asked her how mum could be better off in an environment where there were 15 - 20 residents to 1 or 2 members of staff as opposed to the 1:1 care in her own home she persisted in her suggestions telling me how well the homes were monitored.  That very week in the papers was a scandal that identified how many residents had been mistreated in a home in the same borough that my mum lived.  - "Ok" I said "I will give it some thought", worried about the recommendations she would put on mums file if I was totally honest with what I thought of her idea.  Obviously if a care home is a choice that you have to make after research and weighing up your situation then you do it without feeling badgered into the decision.

You need to make sure you get as much information as possible about services available so that you can access them.  When mum first went to the day care centre she hated it, saying it was full of old people who weren't well, after a while it became an outlet for her rather than being stuck in the house, as far as she is concerned now she is going to work and helping others!

Sometimes we can get so bogged down with the role and what people might think of us not coping that we are frightened to let others in. I used to wonder if anyone else could look after mum the way I could - I became the expert.  Know that you can make room despite the circumstances, and the appearance of things, you have to learn how to ask, and ask again and, and keep asking because the help and the answers are out there!

Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, 

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

G is for Guilt/Grace

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

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

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

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

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

Words so far....

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

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

F is for Fear

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

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

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

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

Words so far....

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

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

E is for Enough

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

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

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

Words so far....

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

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a month with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.

D is for Dependant

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

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

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

C is for Carer

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

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

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

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

 

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

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

B is for Behaviour

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

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

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

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

A is for Alzheimers

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

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

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

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

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

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

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

A - Z April 2012 Challenge - Get on Board!

I decided to take part in the April AtoZ Challenge again this year, it feels like only yesterday that I completed the last post in April 2011 and I thoroughly enjoyed it, met some really great individuals through their blogs and felt that I had grown somewhat from the experience.  See my post reflections.

As a newbie you should definitely check out the Sommer's hints and tips for preparing and pace yourself, writing as much before hand as you can to give you the opportunity to visit as many blogs as possible.  As you can see there are over 1100 people taking part and you will connect with some very inspiring individual, it was an online feast!   All you have to do is add your name to the list!

Think out of the box as to what you will write about, maybe choose something that your interested in.  Over the next week I will be sharing my topic and try to get myself physically as well as mentally prepared for the challenge

You will definitely have an amazing amount of fun taking part and you might even surprise yourself in the process.  Check out the FAQs page.  You can go see some of the participants and check out their pages and their advice.  I definitely recommend that you step out of the boat and dip your feet in, you will definitely come out the other end with a different perspective on things!  Sign up below and start thinking about what you might blog about!

Stay Blessed and be a blessing!  Amanda

Some more useful information.....

2012 A to Z Challenge Sign Up List

The brainchild of Arlee Bird, at Tossing it Out, the A to Z Challenges to post the 

letter of the alphabet every day during the month of April, with Sundays off 

for good behavior. Since April 1 falls on a Sunday, that will be the day we 

start with A. Whether you go with a theme or freestyle, your post must match 

the letter of the alphabet for that day. Add your name to the list, grab the badge 

, and when the Challenge begins, start by visiting the blog immediately after 

your own. Set a goal – we recommend five blogs a day, more if you are able. 

For more information and to stay on top of developments, we recommend you 

follow the A to Z Challenge Blog and the hosts: Arlee Bird at Tossing it Out, 

Alex J. Cavanaugh, Stephen Tremp at Breakthrough Blogs, Jenny Pearson at

 Pearson Report, Matthew McNish at The QQQE, Tina Downey at Life is Good,

Jeremy Hawkins at Retro-Zombie, DL Hammons at Cruising Altitude, Shannon

Lawrence at The Warrior Muse, Elizabeth Mueller,Damyanti Biswas at Amlokiblogs, 

Karen Gowen at Coming Down the Mountain, and Konstanz Silverbow at

No Thought 2 Small. We also have a Facebook page,, email address 

2012azinfo@gmail.com, and the Twitter hashtag is #AtoZChallenge. 

This is a great opportunity to discipline yourself, grow as a blogger, and make 

new friends – come join us! 

Please enter code carefully so that it is accurate.  If you enter your link incorrectly please 

notify us so we can correct it.  You can find our emails in the CONTACT US tab on the 

A to Z Blog.  If you do not plan to participate in the Challenge during April or your purpose 

is to lure visitors to an advertising site, please do not enter a link as it will be removed

April Reflections

April has come and gone and now a new month is upon us with promises of the unexpected, new opportunities, revelation and understanding.

Looking back on April saw my participation of the A-Z challenge on both of my blog sites. After I had committed to the challenge I wondered just exactly what I was thinking to commit myself to writing 52 posts!  It was a struggle and part way through I wanted to give up, especially when life threw some unexpected curve balls!

Moving onwards, I decided to focus on what I wanted to get out of my participation in the challenge and this included improving and being more consistent in my posts, find interesting creatives and blogs, and most of all I wanted to finish!  I dug deep, kept my eye on the finish line and persevered posting 2 and 3 posts when I fell behind, and appreciated all the comments that I got with my posts.  I have connected with some amazing writers and artists, and feel more confident in my writing and more focused in the things I want to achieve with my creativity.  I also was given award above by Elizabeth 

Since completing the challenge I took a break from blogging and just spent time with family and painting. I have been going for long walks which is especially nice since we have had some lovely weather. 

Took a trip to Regents Park and also used it as an opportunity to take some photographs; it was a sunny but breezy day, when we came back I was exhausted.  I’ve also spent the time creating a supply of handmade books among other things. It’s great to get back to the supplies and reacquaint myself.

If ever there was a challenge needed it's now, we need to shake ourselves up a bit and look outside our window. Outside your front door there are amazing things happening, people getting involved in a range of things some that you would never even imagine. Taking part in challenges allows you to stretch and grow and see your situation and life in ways that you may never have dreamed of. It gets you connecting with people from all walks of life and you come out with a renewed outlook...Whats your next challenge going to be?

Zenith

Zenith.... the highest point; peak; acme: the zenith of someones achievements

I did it! finished, got to the end. 

For the whole of April I have been taking part in the A-Z Blogging Challenge with over 1000 other bloggers - a big thank you goes out to Arlee Bird and the team.  Our challenge was to blog the letters of the alphabet daily except Sundays.  I chose to give myself the additional challenge of posting to my art blog which meant that I had to do 52 posts altogether.  While doing the challenge I was also grieving the loss of a friend and fellow artist, Barbara Noel, and attend her Home going service.  We are in the process of adding images of her art work to a blog, if you click on her name it will take you straight there to see some of her work, and watch a video about her talking at her degree show in 2010.

After the first few posts I realised I should have done some in advance as life seemed to be getting in the way, but I was determined not to drop out.  I had wanted to develop my writing and my discipline in producing work and being more creative.  It got to a stage where I had to do 3 posts a day, the thoughts of leaving out some letters came to mind but then I felt I would only be cheating myself so I got on with it.  It is a big relief to be at the end but I am also glad that I did take the time, that I did persevere, that I disciplined myself and showed up when I needed to and made it to the end.  I can look back and be proud of myself. 

In anything we do we have to put our all into it, for we don't know who we will be blessing by our words, actions and creativity. 

I hope that my actions have been a blessing in the same way that I have been blessed by many supportive words from people who have commented and those who have signed up to my blogs, and the many blogs that I have been able to visit, and will continue to visit.

You Tube Video

I uploaded a video I created using Stupeflix a video editing online package, it's only a short thing and doesn't contain my newer pieces of work..  It's really useful resource if your ever thinking of creating your own. With anything if you want to do more you will need to pay for one of the other packages.  One more letter to go in the A-Z blogging April Challenge, there is a reflection mega post on Monday to wind everything up and get feedback of bloggers experience.

x-rayography

Came across a really interesting site about the work of artist Albert Koetsier and his use of X-rays in art, whilst not new, it is part of the history of photography that started almost two hundred years ago.  There are some beautiful images in the gallery, definitely worth a look.

Wall Art

Every now and then you can come across some really inspiring work by other artists that brighten the local area.  Not sure of their names as I couldn't find it on the art.  They can be found in Chalk farm, London, and in Brent

Local artists at Respect Festival in Brent

Victory

We are coming to the end of the A-Z April Blogging challenge, with the last day being on Saturday.  I feel like I have done a marathan twice and the finish line is in front of me.  I wanted to give myself the additional challenge by writing to two blogs this and my art blog and can safely say it has been a great experience.  Only two more days to go!  If you took part, how did you get on?

I know what it is to be in need, and I know what it is to have plenty.

I have learned the secret of being content in any and every situation,

whether well fed or hungry, whether living in plenty or in want.

I can do all this through him who gives me strength.

Philippians 4:12-13

Understanding

Trust in the LORD with all your heart and lean not on your own understanding;

in all your ways acknowledge him,

and he will make your paths straight. – Proverbs 3:5-6

Tea Set

When we were small my mother would make tea using a tea pot.  She would rinse the tea pot using boiling hot water before she added the tea bag and more water (one tea bag for 2 people), and then place the tea cosy on top to keep it warm while the tea brewed.  This I was told was how you made a good cup of tea!  I continued the tradition when I left home for a few years until the one-cup bags became the fashion.

This tea set belonged to my mother-in-law, and it got me thinking about the many other traditions that we had as children that for one reason or the other have now become a distant memory.  Every other week and for all of our birthdays mum would make cakes, pies and buns.  Her fruit cakes were mouth watering and we would wait to lick out left over mixture from the bowl (before the salmonella scare!).  Any ingredient that she put her hand to would turn out delicious - sweet or savoury.  I don't have time to bake cakes except when the mood takes me but my son has learnt to make a mean Arroz Doce (Portuguese Traditional Rice Pudding).

Another tradition is the glass cabinet...Mum still has a glass cabinet that shows off all the 'best' glasses and plates that were only used on a special occasions - at Christmas or when you had guests.  I have a version of the cabinet but the special occasions are more freqent and we don't need to have guests to use them. There are many other traditions.. but that's for another post.

Times change and our kids are growing up so fast, you almost want to cling on to those special memories.  I wanted to remember all of the traditions, and make new ones for my son as he too one day will be saying to his children 'when I was younger my mother used to....... '