I was at Parliament Buildings in Belfast earlier this week for the launch of “Struggling to Cope: Life after stroke in Northern Ireland”, containing research conducted by the Stroke Association. It made quite sobering reading.
There are 35,000 people living in Northern Ireland with the after effects of a stroke.
From the surveys conducted for this report:
- 45% of stroke survivors felt abandoned when they leave hospital. (on a personal note, I feel “abandoned” is too emotive a word, as it implies a deliberate act – I think “detached” is more accurate);
- 78% of survivors said the care and support they received at home was poor or very poor;
- 54% of survivors said they “often” or “always” feel anxious, with 50 saying they “often” or “always” feel depressed or have low mood; and
- 96% experience some level of fatigue (tell me about it!)
There were a broad range of folk in the audience: local politicians, professional health clinicians, researchers, administrators and (most powerfully) stroke survivors.
I was fortunate to be at a table littered with health professionals who had direct experience of helping those who are rushed into hospital with a stroke. Their job is to save lives, and the standard of care they provide is beyond reproach.
Where the support for stroke survivors seems to be somewhat deficient, however, is where that saved life then needs re-built.
I think most people are familiar with the physical effects of a stroke: the facial droop, the loss of function of one, or both, limbs down one side of the body, and difficulty with speech. Not all stroke survivors are left with those obvious signs. The unseen impact can be just as debilitating. Anxiety, lack of confidence, difficulty in finding words (or mixing them up), extreme emotional responses, short term memory issues, difficulty in making apparently straightforward decisions.
There was a shared case study where a stroke survivor described her “new” life, following a serious stroke. She wasn’t complaining about the cards that her brain had dealt her. She was much more philosophical and grateful to still be alive. She made one statement that really hit home. “I always enjoyed life, but now I love life more.” Wow! “More.” Isn’t that a terrific outlook for us all, whether you have experienced a Stroke (or any other serious health condition) or not?
We should enjoy life more.
It’s personal stories like these that ram home the lasting effects a sudden health scare can inflict on any one of us at any time.
But, like Jimmy Cricket used to say, there’s more.
A truly inspirational, honest contribution from one presenter added another dimension – the impact on family. She explained how, following her stroke, her husband had by default, and without him consciously realising it, become a carer from the instant her stroke struck. We often forget about that secondary shock to those closest to the stroke victim.
Quoting from “Struggling to Cope” again:
- 85% of carers did not feel prepared for their loved one coming out of hospital; and
- 98% say they sometimes find it difficult to cope.
When I came out of hospital after my mini-stroke, my wife Eileen could not have done more for me. However, she had to learn what worked, and what didn’t, through trial and error, or just pure luck. For example, very early on, she would “help” me by completing my sentences when I struggled to find the right word during a conversation.
That sounds like the right thing to do, to protect someone you love from possible ridicule. Later, though, Eileen decided to try holding back for a few more seconds, and this forced my brain to do some work to dig out the phrase I needed. OK, there was the odd hiccup: “curry” came out as “coffee”, “marshmallows” became “mushrooms”, but these occasional blips were worth enduring as the brain re-wired itself.
In the main, my non-medical recovery was a combination of my own determination and the support of family, friends and colleagues. I would not be in a position to write here, returned to work, or attended the event in Parliament Buildings without these.
For stroke survivors to thrive, it requires more than scans, tests, physiotherapy and medication. A comprehensive package, involving those medical interventions in tandem with social rehabilitation, can greatly enhance the quality of life.
Although the public authorities tend to get tasked with fixing all ills, I think we underestimate the positive contributions that the non-statutory organisations, families, friends and work colleagues can have on post-stroke recovery (other serious illnesses and disabilities are available).
Promoting stroke prevention, educating people about this prevalent condition and explaining what it’s like to recover from a stroke can all help too. The better we understand what a stroke survivor is going through, the better we, as individuals, can support them.
I know it can be quite daunting to approach someone who has any health condition. Not because we don’t want to help, but we are often anxious about doing or saying the “wrong” thing. As someone on the receiving end, I appreciated greatly those that offered, and continue to offer, their support. The “wrong” thing is better than nothing. Ask not what a stroke victim can do, but what can you do for a stroke victim.
“Help others and give something back. I guarantee you will discover that while public service improves the lives and the world around you, its greatest reward is the enrichment and new meaning it will bring your own life.” Arnold Schwarzenegger