Our local Time to Change Champions are leading the fight against mental health stigma.
For Carers Week 2020 one of our local Time to Change Champions has shared her story on how unexpected acts of Kindness, friends checking in on her and making time for herself has kept her well whilst being a carer for a family member with a terminal illness.
“I support my Mum to help care for my younger sister who has a life-limiting illness, which has been in a terminal phase for the past year.
I describe caring for a family member with a life limiting or terminal illness as similar to being stuck in a waiting room. You can spend years in the room and obviously you want to stay in it for as long as is humanly possible, as to move out means the unimaginable has happened. But the truth is the longer you remain waiting, the more depleted you become both physically and emotionally.
I’m someone who is usually pretty calm and resilient, but I’ve got used to living with a low level of anxiety. I wake up each day and never quite know what might unfold and when I might need to help. I dread family phone calls and WhatsApp messages, as they usually bring bad news. Each time there is a sense of “is this it? Is this the end?” It’s very difficult to keep life normal and on an even keel, but I still need to work, earn a living and see my friends; they help provide structure to my days and light relief and distraction.
Caring involves both a practical and an emotional element. My sister is extremely limited in what she can do for herself now; she needs the same level of practical help as a young child. Understandably her emotional state can be quite volatile, as she lashes out at the unfairness of the situation she finds herself in. It’s hard being an emotional punchbag, but I understand why it happens and I’m beginning to find ways to depersonalise it. Caring is hard work, but it’s also fulfilling. I find comfort in being able to provide some practical help and support to my family; I can’t change the situation or make it better, but I can help make it slightly more liveable.
I live with anticipated grief and the knowledge that sooner rather than later I am going to lose the person I love. The grief is unpredictable and comes in waves. It’s always there in the background, but I have days when it really hits me for six. It’s hard not to retreat from the world on these days. I’ve learnt that on my “bad days” I just need to focus on doing small basic things well, like getting up on time, brushing my teeth, washing my hair. I don’t beat myself up about not functioning as a highly proficient human being on these days; it’s ok to just get through.
My friends help me survive the buffeting of the waves. There are those who try and jolly me through it all, as if it’s a bit of a bad hangover. There are others who spend time just listening, not pretending to have any answers, but just offering their silent support. Unexpected acts of kindness be it a surprise parcel of goodies in the post or a well-timed WhatsApp, help me feel less alone and can turn my day around.
I’ve learnt over the last year that the most important thing I can do as a family carer is look after myself as much as the person I am helping to care for. If you become too depleted, you can’t help anyone. At the beginning I would feel guilty if I took time out for myself or said no to helping, but I’ve learnt self-care is crucial to my survival of the situation. I have a greater appreciation and find comfort in the simpler and smaller things in life. It’s the old cliché of you don’t know how much you really have until it threatens to be taken away.
My survival kit:
The Portsmouth and Southampton Time to change hub is delivered in partnership by Southampton City Council and Portsmouth City Council, co-ordinated by Solent Mind.
We are committed to the Hub being led by Champions. There are many ways that registered Champions can get involved in the direction of the Hub, including joining us at Steering Group meetings. If you’d like to find out more please contact firstname.lastname@example.org.
If you are looking for support with your mental health or wellbeing at this difficult time, please visit our support page.