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.