and myself, Karen)
What does it take to be a caregiver?
Two thoughts:
-Being in a bad place during bad circumstances.. Someone’s pain and suffering causes us to take on a role we never planned for and very likely never even considered.
-Being in the right place when the time was right. Reality is that life happens. It rarely goes as we dreamed or perfectly planned. It is real. Accidents happen, surgeries go bad, disease sets in, cancer takes over, and perfectly imperfect children are born. Care giving happens. Caregivers are the lucky ones, if I may.
Don’t get me wrong. It is not as though I am some sort of saintly caregiver prancing around with an endless smile on my face. Sorry. More likely, I am donned in those infamous yellow rubber gloves up to my elbows, wearing my hear clipped safely on top of my head, with an apron covering my clothes (as if it was a coat of armor protecting me from the days battle, which in this case is the dreaded bathroom job!) I am likely crouched beside my least favorite object in the world- a dirty toilet! In one hand I grip a much-used scrub brush and in the other a can of Lysol spray. Between gasps for fresh air intermixed with spontaneous gagging reflex noises, I am usually mumbling something about how I got elected for this job anyway, where all the others (who love Susan) are right now and something about what I too would rather be doing! About this time, my swirling thoughts are generally calculating the cost of a cleaning person to do this job for me- no, for her- no, for everyone else! Woe is me.
The truth is that care giving is a thankless forgotten job. Your kindest deeds and most heroic acts are done quietly beside dark bedsides and behind closed doors. Those who have not chosen this role are going about their lives, building their careers, enjoying unrestrained travel, undestroyed possessions and the freedom to entertain or whatever else they desire. There are days when fighting resentment is half the job. Caregivers have families and lives too, but must be prepared to put theirs on hold. I am not denying that this selfless act has its own rewards and blessings; they are just often difficult to find and often blurred out of focus. I am eternally reminded by well-meaners that the rewards in heaven are waiting; I also am very aware that I deserve nothing (from a spiritual perspective). But this blog is The Murmurs of a Caregiver- they are real- be prepared.
Sometimes my pain is for her. I sadly watch her struggle to remember and fight angrily to regain her independence. My family becomes the object of her anger, as is true with most caregivers; they are there, and so become the ones lashed out against. In her more lucid moments, I do hear her cursing those who never visit her or call. Occasionally she remembers that and it saddens her. Mostly though, the others are off the hook; she forgets. That is easy to do since the calls become more and more infrequent. There is nothing to remind her that they should care, that they are out there, somewhere. The nurses become her visitors and my children become her ‘neighbors’ and 'friends'.
(Photo: Kiara and Victoria)
At times, often when I am least expecting it, Susan expresses her gratitude to Jeff and I. She says, “Thank you. I appreciate it.” Or “I am glad I live with you and Jeff, Karen!” “I like it here!” She has a comfort zone here- a safe place- a happy home. She is well fed and things are tidy and calm. She is stimulated and encouraged to do more or to walk further or to find 'it' on her own. On the other hand, she is free to be sick, to deteriorate safely, she is not over-drugged to sedate her for our convenience. She is loved and she knows it. That’s what care giving is around here; that’s as it should be, I suppose.
(Top: Susan)
(Bottom: Kyle and Ashli)
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