Michelle Poole's Story

My dementia journey began years ago. It was a sharp learning curve.

I had to;

1. Understand dementia and how it affected my mum

2. Understand and accept what it means to be a carer

3. Realise that so many health care professionals on whom I rely, often don't understand and lack training.......The insistence on providing just sandwiches for every meal eventually caused my mum to rebel and stop eating, she dramatically lost weight..2st in 2 months.

My mother has mixed type vascular dementia with Alzheimer's and was diagnosed in 2004. She's 88, lives alone and I'm her principle carer. I often feel I'm the only thing standing between her and residential care, my mother does not want to go into a residential home and she's told me often. She has told me she wants to die in her own home.

I've had the advantage of courses and Joe's Club, a support group run by the Admiral Nurses for carers of people with dementia. Sharing many different stories, and different strategies with other carers..... a safe place to let off steam. I've learnt a lot.

Getting to understand my reactions, feelings and learning how to cope has been important part of learning about dementia. The more I learnt, the more I became involved. Gaining support, that knowledge and getting involved with Uniting Carers has given me the confidence to speak out.

For years I struggled on my own, trying to keep all the balls in the air, even moving to be closer. It took a while for my sisters to understand, they would argue and challenge what was going on.
I felt it was so important to pass on my knowledge; I wanted to get it right and so often it came out wrong. It was a huge relief when one of my sisters joined me recently as a carer.

Becoming my mother's carer, something I never expected nor sought, struck right to the heart of our relationship. Never an easy one. An ironic role reversal meant I became the reluctant mother and she the rebellious child. But I‘m still her daughter. Many times I would walk away fuming or desperately upset not just by her behaviour, but also by the legacy of past injustices. I felt so guilty about my anger and frustration. Questioning myself .Am I the only one feeling like this? Other carers seemed so saintly.
Strange that now I'm the one she really needs and appreciates.

It seemed everything I did she would undo. Wiping clean the info board. Opening the locked medicine box with a knife and taking all the medication at once. Removing the new microwave by hauling it to the top of the stairs to the top of the stairs. The lockable fridge to keep food in one place, she cracked that too. Losing keys, locking herself in or out. Locksmiths did well out of us!
I know about Black holes in space, there's one in my mum's flat and everything ends up in it at some point!

Over time and with support I've developed many practical and emotional strategies to keep one step ahead and to keep caring. Like hiding a 2nd fridge in a cupboard. Installing a Key safe, key pads and a safe for medication. It is a constant challenge because strategies, like the keys, don't stay in place.

In learning not to overreact and get so upset, and being calm. I am finding new ways of communicating with my mother. Last week, for the 1st time, I invited my mum to help me prepare her some scrambled eggs on toast. I was delighted and so was she when she beat the eggs and then cooked them to perfection.

The time, responsibility and sheer quantity of events can be overwhelming. Mum's psychiatrist said she has moderate dementia, is in good health and could go on for 10 yrs more. Imagine! I'll be 75 and mum will be 99!

It's hard enough caring for someone with dementia without having to battle and worry about care services going wrong, especially as I rely on other care professionals.
I ‘m constantly reminded of how dementia is so badly understood. The other day a new care worker took my mums assertion that she cooks her own food, at face value, and didn't offer her anything to eat. Mum didn't eat for 2 days. Good job I called in! Lack of training and understanding gets in the way of good care.

My Admiral Nurse has helped me ensure my mother's needs and wishes are met. Supporting me as I plot my way through all the services involved in my mother's care one way or the other. Her advocacy role in the review meetings, formal complaints procedure, Vulnerable Adults Service, psychiatrists, social workers, police and many other agencies has been invaluable.

In Conclusion, I've been lucky to have that support and advocacy. So many carers don't have anything. Even with support, it is still difficult. Family carers must not be left on their own to struggle and burn out. Carers know a lot and do a lot. Family carers already save millions.

It is time we all got a better deal and some real support. The knowledge and support I've gained keeps me sane and mum at home. We need skilled and trained professionals to work in partnership with us if we are to continue as family carers. Diminishing resources and increasing demands are sobering. The challenge is to fund and develop those meaningful partnerships. Indeed, it is vital to us all.