Still Learning

Almost 10 years after our nightmare began, you'd think you know everything there is to know about living with a stroke! Not true, after talking to others on Facebook stroke and caregivers groups, there seems to be a common theme. More than the physical challenges, I believe the mental torture is so much worse. The stroke survivor has had their life, as they know it, ripped away from them in an instant, their independence, their purpose, etc. The caregiver, in our case wife or partner, all of a sudden has to not only deal with the changes to their own lives, the whole family, the extra responsibility as well as watch the love of their lives endure a living hell. A lot of the time they turn on each other, it's not intentional, I think it is about guilt, the survivor feels guilty for becoming so dependent (feel like a burden), and they feel useless, and the carer feels hopeless because they can't fix it for them. The carer also becomes overwhelmed, in an instant you become not only wife, but advocate, nurse, personal hygiene assistant, you have to take care of the household chores, driving, budgeting for bills (usually on a much lower income than what your used to), councillor, omg, the list is never ending. You don't sleep much because the survivor now has different bathroom needs that need your assistance or they can't roll over properly by themselves, you also get really sick of trying to explain to friends and family why he can't do a lot of the things that they think just comes "naturally", and the ones who after trying to explain brain deficits to them, choose to call him lazy and say he's not trying hard enough to justify their ignorance! I have found with Frank, if he feels like he is useful ie: he now wants to join our local area committee to help get things done by council in our neighbourhood, he is so much better and I think it's because he has purpose. We have seen psychologists and psychiatrists, but all they want to do is pump him full of more medication, we don't believe that is the answer. So I am still learning how to navigate the psychological ongoing problems arising from the stroke.