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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.

johnnybliss johnnybliss 41-45, M 2 Responses Sep 8, 2009

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I think home-carers have to be one of the most under-rated group of people, those who care for elderly relatives 24/7. It's terribly hard and a strain on every aspect of your own lives. Living without care for yourself and your own needs is far beyond what most people can fathom and the level of unconditional love required wouldn't be possible for some. It's true that parents are there for us when we are children (hopefully anyhow) and the feeling that we must reciprocate when they are elderly and helpless is only natural. I do agree with Johnny that a degree of selfishness is required for your own sanity and well-being. Most countries in the "civilized" world have some kind of help and support available through the State - at least to give a little respite care or some daily help. We each have a right to a life and happiness - our elderly people should not prevent us from living ours - no matter how much our sense of duty haunts us. I also believe that the love and concern flows in both directions - the old folks should understand the right of their offspring to live their lives too and be willing to accept care from others now and again to give them a much needed break. A little tough love might well be necessary, as hard as this might be ...

You're lucky you have a sibling to share the burden. I don't. Its just me. I am on call 24/7. I couldn't just let him (my father) sit in his waste and not do something. I can't bare to watch him sit in a chair trying to sleep because he doesn't have the energy or strength to walk 2 feet and climb into bed. I can't let him lie on the floor in a weird position because he fell once again, I have to find a way to lift him to his feet, even if it pulls a muscle in my back. I guess you have more strength and control than I. All I can think of is when I was a child and I was sick, he was there for me. The least I can do is be there for him. Yes, his illness has lasted longer than any of mine, yet if I were in his shoes I'd want the same care. True I'd probably be more accommodating than he is, he can be demanding and impatient. That's the struggle I have to deal with. Thanks for listening and writing your story. It is believe it or not, helpful.