When Robin Thomson’s wife Shoko was diagnosed with Alzheimer’s the couple didn’t seek help straight away. Only when Robin could no longer cope with the changes in Shoko’s personality did he turn to Carers Support Merton and the Merton Community Dementia Care team.  His advice now? Put a support system in place from the beginning.

When my wife, Shoko, was diagnosed in January 2012, we had no clue what lay ahead. We didn’t realise that memory loss could impact almost all areas of her life. I couldn’t imagine that one day she would lose her amazing skills in cooking…

Looking back, I would advise anybody starting out on living with dementia to begin building your support team from the beginning.

So we just carried on with our life, hoping the disease wouldn’t get any worse. The changes at the beginning were quite gradual. But less than five years later we reached a point when Shoko could no longer manage her daily life. She needed me to be there, all the time, and her personality began to change. I became quite desperate to find help from the bewildering range of resources and support organisations on offer. In the end we found the Merton Community Dementia Care Team which began to give us joined up support. That made a huge difference. Soon after that we were pointed to Carers Support Merton and their representative came home to meet us. She listened carefully to what we had been doing, felt that we were on the right lines, and introduced us to their support activities and other resources that we had not known about. This visit was reassuring: to know we were going in the right direction and to have another person we could go on contacting for advice and support.

Looking back, I would advise anybody starting out on living with dementia to begin building your support team from the beginning. That doesn’t mean changing your present life activities (unless you have to) but it does mean finding the right activities and people that will keep you going. The person living with dementia needs to have people with whom they can relate with confidence and ease, so that when things do become more difficult they are there.

Having friends or family that you can turn to, and any kind of social group with enjoyable activities, makes a huge difference, both to keep you active (in every way) and to support you when things begin to change. In our case it was our church, with both its familiar activities and the friends who cared deeply.

It’s a temptation either to ignore what is happening and hope it will somehow go away, or to become very worried and fall into despair.”

Other parts of your support team may be professional help, carers, sorting out finances and legal matters. Carers Support Merton offers several resources for this. It could include reading books, websites and biographies. We found other people’s personal accounts helped us to understand our own. That’s why, later, I wrote about our own story: Living with Alzheimer's – a Love story, describing our experience and reflecting on the current systems of social care in England.

I wrote there about “What I wish I had known sooner”

“It would have been good to have had… somebody to sit with us and talk us through what was happening now; what we could expect in the future [and] how we could respond positively to both. It’s a temptation either to ignore what is happening and hope it will somehow go away, or to become very worried and fall into despair.”

Each person’s experience of dementia is different. But there are common questions and it’s vital to get basic information and realise the possibilities that lie ahead.

It’s also important to be willing to receive help and support. This isn’t always easy, either for the person living with dementia or for the caregiver. But you can’t carry the burden alone. So very early on you need to adopt the mindset that you need to build up a support team.

Things might become difficult. But you don’t need to be afraid. The person living with dementia is still a person, still the same person, even though changed. You can’t go back to the old relationship. But you can build a new relationship, with love at the heart.

If you, or someone you know, is caring for a person with dementia Carers Support Merton can provide support and resources to help you. Please call 020 8646 7515 (Mon-Fri 10am-4pm).

Robin’s book about his experience caring for his wife is available to order here.

#DementiaActionWeek

#AlzheimersSociety