Three years ago this month, my husband Orkney Beef became very ill overnight with sepsis. Life flipped on its head and I was faced with the very real possibility that I may have to become his carer. This was something I was willing and able to do should the need arise but I was also well aware this was not what my husband wanted for our marriage. Thankfully he made a remarkable recovery, but since then he’s had frequent bouts of ill health and we sometimes feel like we spend our life waiting for the axe to fall.
Fellow blogger Pam talks about her experience of becoming a carer to her husband after he suffered a stroke, and how she set up a support group for others to talk about their experiences with.
Pam shares her story as a guest blogger here.
My husband suffered a stroke in August 2016 and was subsequently diagnosed as having experienced a series of “mini-strokes” over the previous two years.
Stuart rapidly recovered physically, but mentally and emotionally he’s still on a journey. He’s lost his motivation and confidence. He’s given up all his outside interests. He refuses to take part in any form of planning for the future, and he will not reach out to his GP or anyone for help with his current situation. He’s generally quite happy to sit on the sofa in front of the TV.
My training as a life-coach has stood me in great stead through these changes. Between 2011 and 2013 I trained as a Master Practitioner in Neuro Linguist Programming (NLP) with an authentic trainer, i.e. Madeleine Allen of Bright Light NPL. Madeleine gave me a broad, solid foundation to my coaching practice, with over 35 intensive face-to-face days over 3 years, and months of learning and assignments in-between. Madeleine remains a friend, and I’ll be assisting her with one of her fabulous NLP training courses this month. I have built upon my knowledge base created with Madeleine, in other relevant areas, e.g. CBT and Brain Neuroplasticity. (I cringe internally when some other “life-coaches” explain to me that their training consisted of a long-weekend with a local guru, or several chapters of online training.)
I had to learn management of my own inner strength and resilience to be able to assist people with the issues they bring along for coaching. It’s easy for coaches to use up all our positive energy for others and be left exhausted and unable to help any further. It’s the same danger which carers face – of giving all their energy away and having nothing left for themselves.
As a trained coach, I know that Stuart has to take his own time and make his own choices. I can listen, be supportive and suggest options, but decisions are his to make. If he is happy, that’s fine. It’s his journey. There are services there, waiting to help him, when he’s ready.
As a wife, unwillingly cast in the role of Carer as a consequence of Stuart’s stroke, I was quite happy to play nurse, driver, cook, housekeeper, IT expert and accountant, as well as running my own business, for the few months I expected it to take for Stuart to recover. I had no idea that the change to our lives in 2016 was to be long-term, perhaps permanent, and that I would need to consider that Stuart may never work again. In a “spit-spot” Mary Poppins kind of way, I expected him to be able to “pull himself together” and get back to work in around 3 months. It didn’t happen.
As a couple we always had different interests and spent plenty of time apart, which gave us lots to talk about when we came together. Time apart is so often the secret to a long and happy marriage. When I assist people with planning for their retirement, I warn them to be prepared for how different their relationship will be when they are spending far more time in each other’s company. As I do a lot of work from home, Stuart and I are now in each other’s company more than we ever were before, with Stuart often seeming to need me to give him direction to his day. It can feel quite claustrophobic for me.
So, my journey has been a bit like Dr Jekyll and Mr Hyde. Generally, I am trying to be caring, patient loving, and angelic, because I know I have a good man. But there are deep, dark, moments when I just want to cry and scream with anger and frustration. This was not my plan for our late fifties!
I know that in comparison to many Carers, my lot is not an onerous one. I have much to be grateful for. Each time I feel myself crumble, I can pick myself back up and get on with life again. I know I can, because other people do it, day after day. The stories which other people have shared with me have enabled me to keep going. There’s something comforting about knowing that my reactions and feelings, good and bad, are experienced by other people too. I’m not alone.
I actively promote my coaching business on social media and have already set up a Facebook group for people interested in retirement related issues (called “Retirement UK”). It’s taken me an amazing length of time to realise that there are many other carers in the world experiencing their own rollercoaster of emotions as they try to look after someone they love, and that a Facebook group could be a wonderful platform for us to vent, share and laugh together.
Something marvellous can happen when we dare to share our experiences – especially when it’s in relation to areas we have in common. We can say “Me too.”, I know what you mean.” And we can find ways to feel a bit better about our own situation.
I chose the name for the group “Consequential Carers” because we are only carers as a consequence of what has happened to someone else. We each have many other demanding roles and we are juggling tasks like my beloved multi-tasking, plate-spinning ballerina. Occasionally a plate may crash to the floor, but we’ll sweep up the pieces and grab another plate from the cupboard.
I have created the Consequential Carers Facebook page as a closed group to ensure it is a safe and kind place to share. I will post articles occasionally that you may wish to comment on, or you can start a conversation yourself. You might just like to have a look for a while – and that’s okay too.
All I ask is that you help to keep this a kind, supportive and positive space. I’ll keep out people who are trying to sell you stuff, and the many random buff US Navy personnel who seem to want to join groups for no relatable reason. (I have declined dozens of their requests to the Retirement UK page.) I will also exclude anyone who snipes or is unkind to anyone else.
If you are a Carer please include yourself by simply requesting to join the Consequential Carers Facebook group at https://www.facebook.com/groups/ConsequentialCarers/. I’d love to have your company.