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Reaching the other side of dementia care

This week’s storyteller has chosen to be anonymous.

Our storyteller this week coped with the massive demands of caring for a mother with dementia, and is now reclaiming her life. Looking back she realises there was an imbalance in caring responsibilities between herself and her siblings and their families.

As a full-time working mum, I devoted a significant amount of time to my mother’s care. As the dementia deepened, the time allocated increased significantly, which affected my own child detrimentally.

I really wanted to keep life normal for mum and her little dog to whom she was devoted. Initially I did the laundry and cleaned mum’s bungalow, as well as managing my own home. When it got too much I paid someone to clean my own home. Mum would not countenance a cleaner for herself as she was convinced she did her own cleaning!

Trying to lessen the load

Finally the strain of managing two homes and the illness was too much. A demanding working week, followed by weekend and occasional evening visits (involving a 1.5 hour round trip) took its toll. One of my brothers resisted the idea of finding a smaller home. His suggestion was to keep her in her home and to lock some doors so she could not access all of the rooms. This was to reduce cleaning and any damage that would need to be repaired by the other brother! Mum would have managed to open those doors – probably with a hammer!

In the end a move to private, sheltered accommodation was arranged. This required a lot of effort and energy from my older brother and me. The illness continued to take hold and three daily visits by carers were arranged and also a private daily carer who did laundry and some cleaning.

This reduced the work that I had to do, but added to my range of responsibilities, such as telephone discussions with carer organisations about failed visits by carers and 6 pm bedtime visits. I received confused telephone calls (sometimes several times in an evening) from mum in a normal week. I also arranged dog walkers through the Cinnamon Trust. Holiday cover also had to be organised.

There were occasional family meetings but the brothers were more comfortable talking about investments than care. One of my brothers, who lived in the same town as mum, took mum to her quarterly appointments with the consultant, and another shared visits to hearing and sight clinics with me.

On the whole, I feel that while one brother pulled his weight the other was as much help as a chocolate teapot!

A bright future

A few years after mum passed away I decided to retire from a full-time job – partly because the experience of looking after mum had left me tired and long hours were no longer fun or necessary. I’m continuing to work as a part-time, self-employed HR and training consultant, which I enjoy. This tops up my income and provides mental stimulation.

I also give up time to be a voluntary director for a charity training people to plan for retirement wherever they are in the employment cycle. An early job exposed me to the need for such planning and this led me to be able to leave work when I wanted to. The course gives people the information they need to make choices about finances, pensions, wills and other things that are important.

My social life is on the up too, and I can go on holiday without fear of contact due to caring responsibilities.

As I look back I am so pleased to have overcome the challenges that mum’s decline created. My life is sorted and I can enjoy a relaxed retirement and have an awareness of how to protect my son from having to deal with the challenges I had in dealing with my mum.

I’m rationalising my possessions, have sorted my finances, and plan to move back to an area where I formerly lived. There I have friends and it is a slower pace of life, and there is beautiful countryside to enjoy.

While things were difficult at the end of mum’s life, I don’t regret devoting the attention to her as she would have done the same for me. Life is good again.

Read our storyteller’s advice on navigating the tricky world of dementia and family fall-outs.

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