Life has changed and we are learning to live with it

Suzanne is 61 and lives in Tenterden. She’d retired from nursing and was working as a self-employed gardener when she had to give up work in 2014 to care full-time for her husband Roger.

“Roger has advanced mixed dementia and is now totally dependent upon me for everything. We are fortunate, We love each other dearly (married for 39 years), have a supportive family, an active Christian faith, which also means we have care from church and friends. My nursing experience means that I am able to care for him, and want to do so, for as long as that is what is best for him. I was involved with various voluntary work church things, and have been able to continue doing them, with the help of friends/day centre attendance caring for Roger initially, and now because I can monitor Roger using a camera linked to my phone, when I am out.

We have much to be thankful for. However, I have ‘lost’ the person who means most to me in life – my best friend, my confidante. Life at home is very quiet, because we can’t chat anymore. I have to plan everything, in order to make sure that Roger’s needs are met first, so nothing is spontaneous. It’s not like being a single person because I have to sort everything for Roger as well as myself, even though I am now ‘single’ in most social events.

Feelings of guilt/resentment/thinking of the future prognosis are intertwined with all the blessings. I have experienced feeling ‘alone’, whilst not being ‘lonely’, because Roger is physically here. We can’t go out walking anymore – something we used to love doing. Life has changed and we are learning to live with the change.Physically, I am less fit. My diet has changed. But mentally, my faith and love keep me positive and vibrant most of the time.

Carers Support East Kent was one of the leaflets we were given when registering and being assessed, having moved into a new health authority area in late 2017. They carried out a Carer’s Assessment with me and the staff enabled me to access support and put things in place. They have also signposted me to sources of possible help. I have been on a Carers’ walk, a pamper day and a visit including afternoon tea, all of which were lovely breaks. I’d really recommend that other Carers contact them too.”