Carers Week

This week is Carers Week. Saint Catherine’s care for many carers, supporting them through what can be difficult and challenging, but often very precious times.

Through our staff working across all our services, carers are able to access expert information regarding support available to them – financial, practical and emotional.

Today we are launching our ‘Helpful Information for Carers’ booklet that is packed full of useful information, tips and guidance. It covers a summary of Saint Catherine’s services, how to access them, guidance on looking after yourself and your loved-one, nutrition, sleep and much more. We hope it will help carers to navigate what can sometimes feel like a confusing set of circumstances.

Saint Catherine’s ‘Time Out’ carer support group meet the third Wednesday of every month to chat and share experiences. Here are three stories some of our carers have told us about their life as a carer for their partner who has a terminal diagnosis.

Carer 1

When I became a carer, there was no planning, no training, and little choice. I was thrown into the situation and it is now there every moment of my life. It’s been a huge learning curve and the situation is always changing and I am always learning. It dominates my life and I have had to put all other interests and activities aside. The feelings of isolation can be big.

My wife has had Multiple Sclerosis (MS) for 44 years. I am her main carer. There has been a gradual decline in her condition over the years but the last six months has seen a significant decline and a real change in our lives. I have been thrown in at the deep end and given very little preparation. Physically the decline has meant that she is in bed every day, mainly sleeping, but she gets up every other day for three hours. On the day when she gets up, we make the most of it and enjoy lunch together.

Carers from a homecare provider come in three times a day to help make her comfortable, attending to her personal needs and supporting me. The carers cost us £950 a month. There are things that I have deal with, that happen with her bowels, and I never expected to have to do that. I have had to learn to replace her dressings. I do this 24/7. It is my life.

Recently things got to me a little and my family suggested I take a short break. I am going away for four days to see my brother and some friends. My daughter will come in and look after my wife while I am away.

We have a lot of friends who are enjoying retirement, going on holiday and doing interesting things. I always thought we would do that. We don’t. But that doesn’t matter.

It has shown me a new perspective. It has enhanced who I am. It has shown me how much I love her.

I come to Saint Catherine’s Time Out Group so I can spend time with other carers and ask questions. They have made me feel supported and it has become like a family to me.

Carer 2

Our lives were perfectly normal until a few months ago. I arrived home and found my wife in agony on the bed. She’s had two major operations and our lives have changed beyond recognition. I have transitioned to becoming my wife’s main carer. I don’t need a Fitbit to tell me how bad my sleep is. We are up many times during the night.

I have had so much support from Saint Catherine’s.

Recently my wife came in to Saint Catherine’s for respite in the Carer Support Bed which allowed me to take a break. It was great to be able to get away knowing she was well cared for. We have had help with applying for an attendance allowance, been given a blue badge for parking and given lots of other practical support.

My wife has a short prognosis. I spent 7 years of my career being a registrar of births, marriages and deaths, so I know we all die. There’s isn’t a plan or schooling for being a carer, it just happens. One day it is normal, the next, things are never the same again. But each and every day is a gift while we are still together.

Carer 3

I am my husband’s main carer. We have used a lot of Saint Catherine’s services. He was on the In-Patient Unit for two months at one time, and we have used the Wellbeing Centre day care services.

I am on my own a lot and some days I really struggle but we manage. We get on as best we can. We used to go out for the day, meet friends, shop and clean together. Now he doesn’t like to go out, he is asleep most of the time.

People think a Hospice is for one thing, one door in, one door out. It’s not like that. We come in for all kinds of support, for him and me. The counselling service is fabulous and has really helped me to talk through what I am going through and begin to contemplate the future.

I enjoyed every moment of my working life as a carer myself. I knew my husband would need care eventually. I don’t know what I would do without support from Saint Catherine’s.