Leonie

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Leonie

Four years ago I noticed that mum was beginning to display some unusual behaviours. At first we put it down to the stress of caring for dad, who had been diagnosed with multiple sclerosis. I lived three hours away and every time I called mum she would make the same comment. “I can`t cope.”

It got to the point where she was struggling with everyday tasks like paying bills and cooking meals. Later, she began having problems with her speech.

She was reluctant to accept help at first, but eventually agreed to let me accompany her to see the doctor. We spoke to her GP, who referred us on to a neurologist where mum was asked to do a few simple tests. They then told us she would be hospitalised for further testing.

She spent a week on the neurology ward where she was found to have depression and possibly psychosis. I kept asking staff whether it might be dementia, but they kept saying no. Mum spent the next eight months in a mental health unit. I wish she didn’t have to endure that. I wish the doctors had diagnosed her dementia before it got to that point.

Mum was not formally diagnosed with younger onset dementia until we moved her to a different hospital. There, the very first doctor to see her recognised that she had frontotemporal dementia. Although I’d had my suspicions, it was still very hard to accept – she was only 64.

Mum’s diagnosis was never properly explained, which put us all in the horrible position of knowing what was wrong but not knowing what to expect.

Our lives have changed immensely. I’ve had to make decisions that I never wanted to make. I didn’t live nearby and had two small children to care for, but mum wasn’t well enough to look after herself or my father anymore, so the next step was finding suitable residential care.

Over the next month I spent every day searching the internet, making phone calls and visiting facilities. It felt like no one wanted to help me. The comments I received were many and varied – she’s not a good fit; she’s too high care; she can’t afford it or she’s too young. The lack of services catering to the needs of people with younger onset dementia quickly became apparent.

Eventually we found a place that would accept her, but from the moment we arrived I knew it was unsuitable. I remember mum telling me I looked distressed, and she was right! It was the worst day of my life. I drove home feeling shattered and defeated.

Four days later we found another place, close to my home, and Mum soon moved in. She has her own room, a lovely garden, and the nurses are fantastic. It’s clear how much they care for their residents. It’s such a relief!

You go through so many emotions when a loved one is diagnosed with dementia. Anger, guilt, sadness. But you have to be strong because this person that has always been there for you now needs your help, love and support more than ever.

Me and the kids visit every day. It’s just become a normal part of life. Mum walks us to the door each time we leave, then goes to the window and waves goodbye. That breaks my heart every time.

We try to do things with mum that she has always enjoyed. She used to be an avid gardener, so we planted sunflower seeds at the nursing home. Now the garden is full of sunflowers which she can see from her bedroom window. Mum also loved watercolour painting, so I set up an easel and now we paint together.

It’s amazing what a person with dementia can do if you spend time with them. It’s important that you never give up on them.