Steep Curves and Vertical Lines

Most carers want the best for their loved one; that goes without saying.  But wanting the best for the person you care for, and knowing how to provide it, isn’t necessarily the same thing.  

Most family carers have no training, experience or qualifications when they take on the role. Looking after someone you love because they’ve had a stroke, developed dementia or been diagnosed with a degenerative disease is not something most people prepare for.

Sometimes care duties sneak up over time, as a loved one’s condition gradually develops.  But sometimes it can happen very suddenly. My Dad was brain-damaged in a car accident – it took only a few seconds for his and my mother’s lives to change forever.  Similarly, my siblings and I became carers literally overnight when my Mum died suddenly in her sleep.  

You find yourself having to pick up the pieces and take on a new role and responsibilities in double-quick time.  

In circumstances such as these, becoming a carer isn’t a steep learning curve.  It’s a vertical line.

I found it pretty overwhelming at the start because, frankly, I had absolutely no idea what I was doing. I had tried to help out Mum as best I could before she died, but I quickly realised that amounted to a hill of beans when responsibility sat on my shoulders.  I wasn’t just helping out anymore – I was in charge, for crying out loud.

People would assume I knew things.  “What does your Dad need?” they’d ask. “Does such-and-such work best for him or is so-and-so better?”  What are you asking me for, I’d think.  I’m just making this up as I go along.

Dad has aphasia and poor cognitive skills.  Sometimes he can’t express whether he’s feeling ok or not.  He can’t tell me if he’s in pain, or where the pain is – and you can totally forget about a scale of 1 to 10.  Dad has a myriad of health conditions going on, so the permutations are endless.  

So how do I judge that it’s time to call the doctor? Perhaps it’s just something minor that will pass? Is he really in pain to the extent that I need to worry?  And how will I describe the situation to the person on the other end of the phone when I can’t get Dad to articulate what the symptoms are? Could I be missing something important?

Often, there is no single “right” answer to these questions.  It’s a judgement.  Like most carers, I’ve become pretty finely tuned to how my loved one is feeling, when they aren’t well or something is “just not right.”  But I don’t always know what to do about it.  My desire to do my best by Dad can put me under a pressure that I’m not necessarily equipped to deal with. 

For me, that’s where the really stressful bit comes in.  It is in many jobs.  To have a responsibility without the commensurate training or experience to go along with it is a known source of stress.  

We’re lucky here in having a helpful GP surgery and community health teams on hand, as well as two excellent home carers.  They’ve saved my sanity on more than one occasion. How some carers cope without that kind of help I don’t like to think.

Of course, you learn. In fact, many carers become pretty expert on whatever condition or conditions their loved one is dealing with. I now know more about brain injuries than I ever imagined there was to know.  I can have amazingly detailed conversations about basic bodily functions (observing and describing urine being a particular speciality).  I can compare the pros and cons of different walking frames and incontinence pads with the best of them.  Who knew?

Now that Dad is disappearing into the bewildering fog of dementia we’re embarking on a new process - getting to know new needs, new symptoms, new medications and a new routine. I get tired just thinking about it.  

I suppose at least I know how to go about it now – the questions to ask, where to go for information, who to talk to and what to look out for. 

I guess that vertical line had its uses after all.