My Mom Has Parkinson's(PD).
I just got back from running across town (20 -30 min. depending on traffic) to assist my Mom in getting to bed. Nothing new. For roughly three years or so, I've been her primary go to person when she needs help. Sometimes, its BAD. She'll be curled up on the floor or on the bed. Or worse, "wet", not having been able to negotiate her pills and water, let alone a trip to the bathroom. Sometimes, she'll be relatively OK, and just needs a helping hand to get settled. But ALL the time, I know She, above all else, just wants Me to be there.
I've recently, however, had to draw some boundary lines. Being on call, 24/7, every day, sometimes twice a day, has taken its toll on me. I used to live there, caring for her mother (my Grandma MUMSIE) before she passed. And until March of this year, I lived a block or two away, allowing my Mom to call me "whenever she felt like it". I'm trying not to imply she's ever really "cried wolf", but regardless, the late night or early morning calls became too much for me and faced with having to move, I chose (knowingly so) to move as far across town as I could. Not to escape or shirk responsibility, more to just add a physical buffer. I view this as an act of "tough love" on my part, secretly hoping a little guilt may make her think twice about whether or not she REALLY needs me. If you've had this experience, well, you know its not a very pleasant one. You feel cruel, and helpless, justifying your actions to yourself and others, arguing:"that I've been pushed to an extreme". The result has been a significant drop in her calls to me for assistance over the past several months. GREAT. (Sarcastic) But we still have had no schedule for me to go by, and recently, I've had to make it clear that sometimes I won't be available. Going as far to turn the phone off to avoid guilt if I see she's calling.
I have some help, a few assistants have helped during the days, but no one real consistent. And no one at night, except my brother in the early morning on his way to work. His involvement coming only as of late when "push came to shove." I'm demanding a schedule to be drawn up. I can't be on call all the time anymore. Between her care, and my 95 yr - old grandmother "Gran",(who's in great shape, lives 10-15min. away on the "other", other side of town... and doesn't drive me crazy) well, let's just say that with the economy the way it is, work is a hobby of mine. I relish the days I get to get dirty: tearing into a house remodel, framing a fence, or painting blissfully away, untill my arms are sore.
As some of you surely know, there are few feelings worse than the one you get when you WANT to help a loved one, but FEEL like you can't.
Progress is on the horizon I think. New doctors, a new pill regimen (more on THAT later), my brother's attention to the situation... all hopeful positives. And I think I'm finally getting everyone to accept the FACT that I need to have a schedule: days that I will be there, as well as times that I can expect to be on call. This is all I ask, I really don't even want $ compensation (even though I am desperately falling in a hole financially). And will even accept the fact that there will be those times when I'll be called upon at a moment's notice.
I can share more, but, I'm tired. It feels good, though, to express this all.