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.