Designing a support system

My Aunt lived on her own with dementia, as her condition worsened she alienated all other connections. I had to work hard to stay on her good side so that she had one good contact amongst her family and friends. This worked, when she needed someone to care for her, I was the only person that she would accept help from. Instead of building a circle of support around her, I built a circle of support around me so that people could help me with my life and in turn I could help her.

I needed people I could turn to for practical advice and emotional support. In my case the emotional support was particularly my son and my sister, while the key practical support was her neighbours. I made sure I was in good contact with them so that they felt comfortable phoning me if they noticed anything odd. They were my eyes and ears. This was especially important as she lived 50 minutes away from where I lived!

I involved people in three key ways: One, I would keep people updated via SMS and I would tell everyone the same message – the neighbours, my kids, and family. Even people peripherally involved would know what was going on. This meant that I could make requests and people would know what was going on. Nothing surprised them. These SMS’s were key as it not only allowed me to ask people for things it also meant people could offer useful help, things which I actually needed.

Two, My sister was also a huge help, she couldn’t help face to face with my Aunt but she would do anything that was not directly involved. Any paperwork or research that needed to be done I would pass onto to her.

Three, I also accessed my Aunts Christmas card list. This allowed me to contact all of her friends and contacts some of whom I hadn’t met before. This also expanded the support network of her old friends. I sent them all a message saying: “I knew that my Aunt hasn’t spoken to you for a long time this is why…” All of these people proved to be really helpful and supportive along the journey.

I found it really challenging to ask for help for ME when I was meant to be caring for her. This was a big change for me as I am normally the one helping others. I would find myself saying “can you take the washing off the line for me, as I am 40 mins away and it has just started raining?”

When I needed help people were very happy to help as they knew they couldn’t do anything themselves. I found people would often say: “yes we would love to” – it was their way of helping out. I think that the SMS system really helped with this.

I would always follow people up and thank them; this encouraged them to do something again. One time, I noticed that someone had delivered some nice flowers so I would send them a quick SMS to thank them.