Sally Miller - Saint Francis Hospice and Living with Dementia

Stephen was diagnosed with Alzheimer’s, which is the most common form of dementia, in 2019. Here his wife Sally shares why attending the Living with Dementia support group at Saint Francis Hospice is providing vital support to help them cope with the disease.

Stephen and I married in 1988, and we have three wonderful children and four grandchildren.

We both worked as local government health inspectors for over 30 years. Stephen was at Newham Council and did a lot of work around the 2012 London Olympics. He headed a team who managed the health regulations for all the surrounding boroughs.

Around 2014/2015, when Stephen was semi-retired and working a few days a week, I noticed that he was forgetting things.  I knew something was wrong, but I couldn’t get him to a doctor.

Then it all changed in 2019. Stephen went into hospital to have a knee replacement and the next day, I got a call from a doctor, who said, “you do know that your husband has dementia?’

Eventually he was diagnosed with early onset dementia as he was under the age of 65.

The doctor told him he had Alzheimer's and asked if we had any questions. I was shell-shocked but Stephen just said, ‘no, lots of people in my family have it.’ That was the only time he ever spoke of it.

It has been very difficult for me. I do have lasting power of attorney, but I don’t know his wishes. I have to hope that any decisions I make are what he wants.

We are now 6 years in, and I often feel very lonely as everything is on me. Stephen isn’t able to initiative conversation, so we don’t go out for meals.

He would not know if there is a king or queen on the throne or who the prime minister is. He no longer knows the date of his birthday or how to sign his name.

He was recently asked what he used to do for a living and despite having worked all his life, he had no idea.  

Sometimes he will say his dad is coming home and I will tell him he is still at work. There is no point telling him his dad died as he will go through bereavement again.

When I see him unable to do something for the first time, it is very upsetting. It is the opposite of when your children do something for the first time, and you are so excited.

I was surprised when I found out about the Living with Dementia Group at Saint Francis Hospice as I didn’t know they could help people with dementia.

We really look forward to going and it is so nice to have something to do with Stephen.  For us, the hospice is about helping Stephen to live with his condition and supporting me as a carer.

The group is so well run and the effort that Tracy, Klaire, Chloe and the other staff and volunteers put in, is amazing.

One month, the theme was holidays. They played a video, and everyone started singing along to the song, ‘We’re all going on a summer holiday.’ We had a wonderful time making sandcastles too.

Another time, the theme was pets, and everyone brought in photos of their pets. There is always a focus on the senses with music and lots of different things to smell. 

Saint Francis Hospice is a lovely vibrant community. As soon as I drive in, I relax. When I go to places, I tell everyone about the hospice. I share my experience and how it can help with other services if we need them.

There is so much joy at the hospice. You walk in and everyone is smiling; they are so caring.

I used to wake up with panic attacks. That doesn't happen anymore because I have a broader network of support.

As a carer, I’ve had complementary therapy. I’ve had a hand and foot massage to help relieve stress.

It was lovely to have something for me while Stephen was at the day centre he attends. I was able to sit back and relax. It really took my mind off everything for an hour.

For many people with dementia, once they are given their diagnosis, they are left on their own. It can be very scary.

The hospice is a lifeline. You know you will be going to the hospice every month but if there is a problem in between, you can give them a ring.

There is also the OrangeLine confidential telephone service and you are encouraged to ring and get support if you need it. It is such a personal service as you can speak to people who know about you. It is an ongoing relationship. It is like meeting a group of friends, but they are a team of professionals.