The Blog

Spilling the Beans

We have a special visitor from abroad with us at present, who is taking a much needed holiday. "Why is he special?" I hear you ask. Firstly we've known each other for more years than I care to mention, but this is not what makes him so remarkable. If I were to tell you our visitor shares much in common with my darling husband who takes such good care of me, you would be right in coming to the conclusion, that our guest is also a caregiver. His lovely wife, a dear friend of mine, was diagnosed with Multiple Sclerosis in her mid to late thirties, a huge shock to the system, coming to terms with such a hard life changing diagnosis.

I'm known for being a "chatterbox" (I always insist it's genetic) but now I've met my match! Sitting together one afternoon, we talked non-stop for about three hours, solely about the difficulties of living with chronic degenerative disease. Although I suffer from Gaucher and Parkinson's, where as my friend has Multiple Sclerosis, these diseases, as do many other debilitating illnesses, come up against very similar problems. In a safe environment, we felt comfortable talking candidly about the daily hardships that we and our families both face, and how necessary it is to stay flexible, having to accept changes and make alterations as the disease runs its course.

Spilling the beans, it was refreshing to sit with someone I know personally, who totally understands our situation. From the expression on his face, nodding his head with empathy as I began to speak, he could almost have finished the sentence for me. It doesn't matter what chronic disease one suffers from, I suspect the strains imposed upon the caregiver don't alter too much. As we talked about the various aspects of our lives that have without doubt been altered, despite the extreme problems we share, throughout our conversation I was struck by the loyalty, devotion and love he so clearly has for his wife.

What makes someone stand by their spouse in such circumstances, and why do some people throw in the towel vanishing into thin air? It's very simple when you get down to it; there are only two choices, to stay or to leave. Those who stay the course, have strength of character, and in my mind are true heroes. Those who choose to leave are not bad people, but simply can't hack it and lack the ability to commit themselves long-term to caring for another, which is not to be under estimated for one moment, as it's a rough, harsh road to travel.

Who are these extraordinary people we call "caregivers"? Perhaps they are earthbound angels, whose wings cannot be seen, or maybe they are the best of humanity and an inspiration to us all. I would like to think they are a little of both!

All caregivers need respite now and then, from the normal daily task of caring for a loved one. A change of scenery, pace of life, having a complete break is vital. The very fact they care so much, and have taken up the mantle of "caregiver", needless to say, would love nothing more than to lead a normal life, participating in activities and taking vacations together as a couple. It is most certainly not a caregiver's choice to find a new hobby or have a short vacation alone, but it is in their best interest to re-charge those internal batteries for good mental health to enable continuing their role as a caregiver.

So whether you are a patient, caregiver or an angel without wings, by talking and spilling the beans with one another, the support, encouragement and different perspective both parties receive is immeasurable. This gives us the motivation that great things can be achieved, and small victories, made one day at a time.