As we celebrated the old fella’s birthday this weekend I can vividly recall the morning, one year ago when my Dad woke up complaining that he’d pulled a muscle in his arm but it was obvious to us all that something was seriously wrong. After a visit to the local doctor’s surgery he was despatched to the bus stop to make the thirty mile roundtrip to the hospital on a very stormy day lashed by gale force winds and torrential rain. When I returned from work I found my Dad soaked right through explaining that he’d had to ask the bus driver to retrieve his bus pass from his pocket as he was unable to and that was the first time of many that I was to cry tears of frustration that year. It’s hard not to when your old Dad who has always been so strong and self-sufficient struggles to even feed himself. Other times you laugh at your own incompetence such as when I accidentally locked him in the house with a lunch of bananas and sausage rolls completely forgetting that he would be unable to open them. I am forever trying to find ways to shave minutes off my day often falling into bed exhausted and I discovered pretty quickly that I’m not superwoman or a juggler so some things have had to change. Inevitably, it’s the things you enjoy doing the most that get sacrificed when you are under pressure.
It’s been a real journey of discovery and I have learned the hard way who my real friends are. Whilst many of my contemporaries are wrapped up in weddings, new houses and new families my life starts at five am when I’m awake for work and the rest revolves around hospital appointments, shopping, cleaning and repeating the whole process again the next day. You no longer have shared interests because you have very different priorities. They struggle to identify with your commitments as a carer and you constantly explain why you can’t just jet off with them on a much-needed holiday. Concerned friends soon stop asking when they realise you can’t fix a stroke with a couple of aspirins. Your hopes and dreams are parked and the life you imagined yourself having fades into the distance; this situation quickly becomes the new normal. Do I ever get resentful? Well of course, I’m only human after all and sometimes it’s hard surrendering your independence for dreary routine. There are no quick fixes here, no magic wands to restore mobility and recovery has been painstakingly slow but this is a marathon not a sprint.
There is help out there for those that are prepared to fight the system or are fortunate enough to have someone who is able to do that for them; for those that don’t no doubt they fall under the radar of our social services and struggle on alone unaided. In addition, gadgets enabling an easier life for those afflicted are ridiculously overpriced again taking advantage of the most vulnerable.
For those finding themselves in a similar situation if I could I’d gently take your hand and assure you that you’re not alone and that there is life after a debilitating family illness. Is it going to be harder than you imagined? Most probably! Will you have some really bleak days? Without a doubt you’ll feel incredibly overwhelmed, bone-tired and isolated but your sense of always finding the funny will get you all through. Will it get better? Definitely. It’ll be a big learning curve for everyone with both uplifting positive and desolate negative moments. You’ll lose friends but you’ll meet better ones worth keeping. For every hard-hearted dismissive jobsworth you encounter you will stumble across people who are like bottled sunshine. The old fella has made tremendous progress but we’ve learned to celebrate the little simple triumphs like seeing him pick up a knife. So why then don’t I just quit my job, buy a ticket and run away to Turkey? Because quite simply, he’s my Dad.
Not the best picture but this little one-footed fella dodges all the bigger birds every day to sneak a crumb when I’m feeding the rest and he reminds me that you can overcome anything.
For those facing the same struggles as our family if you haven’t already please try contacting the Stroke Association who are just amazing and helped us when no one else would.