How Are You?

The question that no Carer is ever asked.

We are legion and there are more spousal and child carers than you know. You might not notice us but we are there. The woman in the checkout queue who has a Husband with cancer at home. The child hurrying back from school to a Mother with MS.

Caregiving can be a lonely job. Illness can change the course of your life in seconds. It also changes the lives of those around you.

My caregiving journey started in 1996 when my now-husband suffered a devastating subarachnoid brain haemorrhage. He wasn’t expected to last the night and things were so dire that even the subject of organ donation was discussed. If he couldn’t live then he might be able to help someone else to. Very very thankfully that didn’t happen and four and a half months later he came home after having brain surgery and a shunt fitted.

When he returned home a new normal began. Mentally he was pretty good but mobility wise rather dire. He had to hang onto things to get around the house. I was terrified of him falling down the stairs if he needed the toilet in the night so the bedroom came downstairs along with a urine bottle. In the day I could help him upstairs to the bathroom if needed.

A new cardinal rule came into being. NO BATHING UNSUPERVISED. Too much of a risk of falls and slips. A rule that exists to this day.

The brain haemorrhage started with a headache. I shall never forget the screaming from my husband as the headache was so painful. Many haemorrhage survivors describe the headache as being hit in the back of the head with a sledgehammer. Although he recovered and came home the word “headache” took on a new and terrifying fear. If he mentioned he had a headache then a growing gnawing feeling would rise in my stomach. Could it come again? Fingers and toes, touching wood and crossing myself it hasn’t but the word “headache” troubles me to this day. Anybody with a headache now troubles me.

One of the things I’ve noticed as a carer is that no one ever asks how the carer is. Only the cared for is enquired about, “how is he today?” comes the question. It’s almost like the carer has ceased to exist but in many cases, the carer keeps the show on the road. They’d damn soon notice if the carer wasn’t there because the whole house of cards may well collapse. Who will sort the medication out, book the appointments, talk to the doctor, feed, bath and wash. Any volunteers?

But even so we’ve had humour. Barrels of it in fact and that’s what has kept us going. We’ve even had a baby daughter pop up who is now a young woman. He calls her his “miracle daughter” and after all he’s been through she probably is.

What I have learnt though is that carers must take time for themselves, eat well, sleep well and keep as healthy as you can. Outside interests and people to talk to are a lifesaver and enable you to carry on with a bit of life of your own.

We’re still standing though and in the later years we’ve thrown in two DVT’s and a small pulmonary embolism for good measure but our canny Old Gent is still grinning from the sofa. The DVT’s were sorted with Warfarin which at first he didn’t want to take. But our then thirteen year old daughter stood by his hospital bed and summed it up rather bluntly. “If you don’t take it, you’ll die”. I’m rather glad she hasn’t gone into medicine as her bedside manner would need working on but she’s taken it all in her stride and has never sadly known a completely well Father. She loves him though and that’s what counts.

Compared to many carers I am very lucky. I have a good life and love my husband. Others are barely hanging on and this must be acknowledged. Some are leading hellish lives with little hope of respite and sadly only divorce or death can release them. I’ve read terrible stories of carers suffering verbal abuse and worse. Carers who are children missing out on childhood, friends, school and socialising. A carer’s lot is not always a happy one. If this is you reach out for help and talk to someone.

And for those of us who are not carers, ask any carer that you may know how THEY are today.

“How are YOU?” three words that could make all the difference to a carer’s day.