This week, some of The Joy Club team are participating in the Dementia Carers Count campaign, ‘Every Small Step’ – a walking challenge which shines a light on the lives and contributions of friends and family members caring for someone with dementia. In this blog, member and self-development mentor Kathy Feest, writes about the experiences of facing ill health, personally and alongside a loved one or close friend. This blog is an important reminder that we all deserve to take time for ourselves and enjoy the good moments, however small, in times of difficulty.
Let’s face it, there aren’t any good diseases – whether we are suffering from or caring for someone who is suffering with a disease, it’s not easy. Whatever malady it is, it won’t be nice. That’s the thing about disease. It causes us a dis – ease in our life. Having had a few health issues in the past myself, and cared for people with them as well, I personally find it easier to deal with having something myself.
Watching someone you love navigate pain is not easy.
Whatever disease we have we find ways to handle it because we don’t have much of a choice. When someone else has something the matter with them, our choices seem simultaneously limited and more numerous. But here’s the rub. No matter what, we can’t usually make them better and make life like it was before. Unless we are health professionals… and even then, options are limited.
As we get older, we seem to be dealing with infirmity and ill health more and more. Our family and our friends need us in these times of difficulty and so it’s important that we work towards figuring out what we can offer, and also how we do that while holding on to who we are, and getting at least some of our needs met. These are times of difficulty in any relationship!
Sometimes, when we are either parents, children, friends, wives or husbands we can’t offer what we would like. That is tough. Seeing someone you love suffering takes its toll, definitely on you and sometimes on the relationship itself.
My experience of being a carer has been in various roles, as a mother, a daughter, a daughter in law, wife and as a friend. Each of those roles has had moments of difficulty, ghastly moments and some funny times, too – like the rest of life.
My father had dementia, and was in a home for several years. My visits to him were fairly infrequent as it meant getting on a plane and travelling across the Atlantic. Nevertheless, I made sure I visited several times a year. These visits, by their very nature, were intense. Visiting from afar means you spend hours and hours of time together when you finally get there. It isn’t easy. But neither is going to visit frequently for short bursts of time. Once, when my husband and I arrived, my father had no idea who I was. He kept looking at my husband, then back at me and finally with that lovely delight of recognition pointed to my husband and said, you’re the doc! Then he swivelled towards me and said, ahhh, you must be Kathy! Nice to be recognised.
Whatever the disease you or your loved one are coping with, you will also need time and space to process your own feelings, good and bad. And make no mistake about it, when you are caring for someone, you will be exploring how it makes you feel. Even if you never share those thoughts with another person, you will undoubtedly spend time churning through thought processes that you cannot ignore. Sometimes it’s useful to think about the person as separate from the disease.
In particular, there are times when the symptoms of dementia cause us a great deal of pain or frustration, prompting a comment back from us. In those moments, it takes pains to remember that it is the illness itself causing us to feel hurt, and not the person we know and love.
I went to a memorial service this week of a friend who died far too young. At sixty two she was thriving. And then she wasn’t. A shocking diagnosis and a quick demise meant that from first signs of ill health to death was just under a month. How could we all not have been left reeling? This experience has reminded me just how important it is, particularly if you’re ill or caring from someone who is, to grab those moments with the people you love. Find some time to feel – really feel – what precious life moments mean to you and do your best. We all struggle sometimes to know what that is. You are not alone! Your best is not mine, it’s yours. Whatever works for you – works.
When you need it, find something that fills you with wisdom and speaks to you. For me, it’s often John O’Donohue’s book ‘Anam Cara’, translated as ‘Soul Friend’. And on nights when the wind howls and the tears flow, I might be seen reading Norman Cousins, ‘An Anatomy of an Illness’. Or watching an old episode of Frasier, which always but always makes me laugh. When life keeps handing you tricky times, or you’re facing difficulty after difficulty, I find that the saying more often proves true – laughter can sometimes be the best medicine.
So my advice is to enjoy the little things. Cherish those wonderful moments of your life, however small.
There will no doubt be days when you cry, or feel despair. Keep going. These are the times when you have to remember to hold on for dear life. Your dear life. Live it as though there may be no tomorrow. Love, care and give yourself a break. Your life matters, you matter and those around you, even though they can’t always find the words to tell you, love you and all that you do.
Kathy has written her own blog, Feest Isolation Days – Reflections from self-isolation in Bristol, which she updated every day since the start of the first lockdown in 2020.
Kathy will also be hosting a series of session at The Joy Club focusing on self-development and empowerment. Members, click here to find out more and book your place. Interested in joining these sessions but not yet a member? Click here to sign up for free today.