“Becoming a carer came as a total shock when my partner Graham suffered a stroke at New Year 2022, less than a year ago. He spent nine days in hospital and then was discharged to my care. We had wonderful support from the Stroke Early Supported Discharge Team at the hospital, but I was thrown in at the deep end from that first day he came home. We have known people who have suffered strokes, but until it’s someone you love you don’t realise the impact on both those involved. Many times Graham would attempt to do things which were clearly not possible and the frustration he suffered was horrible to witness. I found myself constantly worrying in case he fell or dropped something and had to try to stop myself doing everything for him. We joke about it now, but Graham used to call me “Mother Hen” and say that if I fussed too much I would get told to “cluck off”… we do try to keep it polite!
“When it became clear that Graham would not be able to return to work for some time, we had to close down our medical practice and that meant I had to tell our staff, colleagues and patients, which was very hard. After that, we lost our routine. Previously we had woken at 6am, I took our dog Roco for a walk and then we drove to work and started our long day. Lunch was grabbed on the hoof and then we would head home around 6pm, where I would cook a meal and we would try to relax a bit. That is all ancient history now.
“One major change has been the lack of contact with other people. We were used to interacting with many dozens of people every day. Now there are days when we don’t see or speak to anyone. We are waking later and everything takes twice as long as it used to. We have disturbed nights due to Graham’s medical problems and I rarely get a full night of sleep. Both of us are finding that we are often exhausted.
“As we were both self-employed, stopping work has meant that our income has fallen to zero and we could not, initially, claim any benefits. Graham was fortunately able to claim his State Pension just as the stroke hit, but I am five years younger. After he was also diagnosed with heart failure, it became clear that his health issues are long-term and we were then able to claim Attendance Allowance for him and Carer’s Allowance for me. We are in the fortunate position to have some small savings, so are now living on those and benefits and hope to eek out those funds as long as possible.
“As we live in the countryside, we are reliant on a car which means I watch rising petrol prices with growing horror. Trips out for pleasure have reduced as prices have escalated. We rely on oil for heating our home and there is little support available to help with prices which are at least double what they were last year. Our heating bill will rocket as we are both home all day and Graham feels the cold so needs warmer surroundings. I am seriously planning how we will keep one room warm and even sleep there in chairs should it prove necessary to shut off part of the heating. Extra layers of clothing are already being worn.
“Our big fear is that benefits and State Pension will not keep pace with cost of living increases, and people like us who receive those are the least able to adapt. The recent budget offered some small comfort of a potential increase next April but in the meantime costs go up and I see basic food prices rising every single week. When I first became a full-time carer, I had hoped to get a part-time job, but it’s now crystal clear that I cannot leave Graham for long enough. I am checking out slow-cooker recipes for soups and casseroles that will use minimal electricity and still provide hearty, warming meals for us both.
“Forgive me if I sound soppy, but it has brought us closer together. We’ve always had a loving relationship; we’ve been together for 25 years and celebrate our 14th Civil Partnership anniversary in January. I now love him even more than ever and feel closer to him. Perhaps that is due to him being so dependent on me, but I don’t think of it like that. He says he feels like a burden, holding me back from what I might want to do, but our vows still mean so much to me that I could never walk away. Right – enough of the tear-jerking!
“I feel, though I am certain Graham would laugh and disagree, that I have become more tolerant. I consider how he feels if I who our real friends are. Not those who ask ‘how are you?’ and then bleat on for the next ten minutes about their problems without giving a chance to say that you feel rubbish and a friendly voice for a few minutes is what you really need. The neighbour who offered to walk the dog occasionally to take the pressure off; or the barber who said, “Don’t struggle in to see me, I’ll pop round to the house on the way home: no extra charge.” Small things like that mean much more that an invite to ‘pop round for a coffee’ (which is often simply impossible).
“The most recent setback is that we have discovered Graham has a large tumour in his prostate. Whether this is cancer remains to be seen, but it has made us look yet again at our lives and we are determined to create more memories, just in case things don’t turn out too well.
“A major way for me to find time for myself is taking Roco for a walk. I am away from most pressures and can let my thoughts run free. I am never out of touch though, as I have to have my phone with me in case of an emergency. Going to the gym also gives me an outlet for frustration while (hopefully) doing me some good – but appointments often get in the way and I need to consider how stable Graham is before I head out.
“For years I have enjoyed cooking as a creative outlet; I would switch off from everyday life when cooking and love to see people enjoying food I’ve prepared. Recently, probably due to feeling so tired, cooking has become more of a chore than a pleasure. It’s something I need to get back to enjoying. We joke that Graham has cooked one meal for me in 25 years but he would love to learn – usually his comment is, “I will cook a meal - it should be ready in about a week.” We have a goal for him to learn some basic cooking skills as he, hopefully, continues his slow recovery. Another thing I want to do is writing. I have always loved reading and have a couple of stories in my head which I want to get down on paper. Now, where did I put that spare few hours each week?
“Never hesitate to ask for help. Don’t try to do it all yourself or you will not be able to provide the care you want to give. I have always recommended that carers think of themselves and don’t hold back when asking for help. Oh, how easy it was to say that but how hard it is to do it now that it’s my turn. But you must – for your own health and sanity. Pester your GP and don’t be pushed aside by medics in hospital. Contact your local council to see what help is available or to find out about support groups (the best are those run by people who have ‘been there, got the t-shirt’ and can understand why you want to scream but dare not). Ask about leisure facility discounts and bus passes.
“Don’t be put off by the minefield of benefit application forms. It’s your right to get support even though you are made to jump through hoops sometimes. Citizen’s Advice will help with form filling as will other charities and some local councils. Finally, if you feel things are too much for you, don’t bottle it up – tell someone. Contact your GP or the GP of the person you care for. They have a responsibility to ensure YOUR health is considered too.
“Do not – for one minute – think you know what it is like to be a carer! Before this, I thought I knew how hard it could be. People, with the best of intentions, will ask how you are but not appreciate that when you reply, “Oh… I am ok” it often means, “I am just about coping.”
“Please listen to the answer and hear the feelings behind it – don’t just take it on face value. Do not assume that you know how it feels to be ‘on-call’ 24/7, or have to get up at 3am to change a bed and then try to catch up on sleep with snatched cat naps during the day.
“Step back, take a deep breath and remember ‘there but for the grace of God go you’. None of us can know what is round the corner. Anyone can be thrust into the role of carer without warning and there ain’t much to prepare you for it!”
