Carers Week: Carol’s story

Carol’s story:

Life for me and my husband Tommy has changed very much since he was diagnosed with frontotemporal dementia aged just 66.

I am a very outgoing person but Tommy’s dementia means that he no longer likes to be socially involved with other people, apart from some members of his dementia groups. He no longer enjoys family gatherings. Our trips to Ireland to spend time with our family there are no longer possible, so I miss the precious time with our grandchildren.

Tommy is 76 now and attends the Alzheimer Scotland dementia resource centre in Clydebank for two hours a week, but most of the time it’s just the two of us at home. Tommy’s condition has progressed in recent months and he is becoming anxious and upset more often.

Each day brings different challenges depending on how Tommy is. As a carer, and his wife, it is very hard to live with that imbalance and to not know what each day will bring. But unfortunately that is the nature of his type of dementia.

At the same time, we have less support than we used to as budget cuts brought an end to our weekly local day service. That has been a huge loss.

For myself and other carers, support services like day care bring huge benefits. They give you that bit of time to yourself, which is so important, and the person with dementia also gets so much out of it.

There are cuts like this being made to dementia care across the country and I think the whole thing is a false economy. Carers are saving the government millions by having the person at home. If that carer doesn’t have any support, they just won’t be able to cope anymore and it will put even more pressure on social services, which are heavily loaded already.

I feel very isolated at times and I don’t know what the future holds. I have applied to social work for funding to hopefully get a carer to spend time with Tommy once or twice a week, but I’ve been told the waiting times are very long.

One upside of this whole experience has been the lovely friends I have met along the way, many of whom are also caring for loved ones and know what I’m going through. But I’m 75 now and not getting any younger so I just hope more support will be made available to help me and the many other carers like me.