Tuesday, May 31, 2011

The weight of the world on your shoulders....

I'm sure I'm not the only one in this position.  Not the only one who feels sometimes that they have the weight of the world on their shoulders.  Not the only one with a parent with dementia who lives in a nursing home.  Not the only one who seems to be the family member that gets to deal with all the crappy bits all the time.

My mum is in a nursing home with dementia.  The home is only about a 20 minute drive away and it is straight across the road from a hospital.   Over the last couple of months I have had at least half a dozen phone calls in the middle of the night or at least late at night saying that they have sent mum to the hospital.  You know the horrible feeling you have when you get those dreaded middle of the night calls, the ones that send your stomach into knots.  As I wake, I automatically think of all the people it may concern, is it my mum in the nursing home, is it my Hubby's parents in New Zealand, is it one of my stepkids, is it, is it, is it.  Well every time so far it has been my mum.

Last night was no different, phone rang at 11pm,,,,nursing home saying that they had just sent mum to hospital suffering severe chest pains.  I kept my head and hung tight.  I didn't go flying up to the hospital, I remained calm.  I waited an hour then called the hospital, they had done bloods on her and it would be about 2 hours till the results came in.  I finally fell asleep and called the hospital back this morning, to find that she had been sent back to the nursing home, nothing abnormal showed up.  We are okay for now, until the next time.  This is the first time it has been chest pains that have sent her to hospital.  Normally it is her "non responsive attacks", where she just doesn't wake up.  These can last for an hour or more, the cause of these is unknown.  She has had countless tests and everything comes back negative.  My mind boggles at this, how can nothing show up as being wrong when obviously there is something wrong?????

Now the thing that really annoys me is this........I have 4 brothers, yes 4!!!  And out of the 5 of us, I am the one that gets to deal with the stress of these calls and the worry all the time.  My eldest brother is estranged from the family and lives in Queensland.  The next one lives in Canberra.  I have another who lives about an hour away in the country, he is moving to Victoria in a month's time.  And the final one lives about half hour from here and he and I are the main people to be notified when things go wrong.  Thats great except for the fact that middle of the night calls go unanswered in their house.  They don't have a phone near the bed so by the time they get up, it goes to messagebank.  But do they get up to check it,,,,,no!  Do they have the mobile phone near their bed???  No!  Many times I have tried both home and mobile phones and they don't even hear them.  Then I get a call in the morning asking what all the fuss was about.  Normally I then call my brother who is moving to Victoria because they do at least ring me back, they often don't make it to the phone but they at least get up and check the calls and call me back.  They know that if I call at that hour, it is urgent.

Last night my way of dealing with things was to just send each of those two a text message letting them know.  And as usual the closest one didn't get back to me, and the country boy texted back saying "when you know more let us know"........like they can't call a hospital themselves??????  Would be nice for them to say we will call the hospital and let you know, or something like that.  But no that would be too hard!

Geez this has turned into a rant hasn't it.......I guess I am just so frustrated right now.  She is their mother too and yet everything that is "hard to deal with" gets handballed to me.

I think right now, I am having a hard time dealing with the whole dementia thing.  Thankfully she still knows who I am when I go to visit her, but each time I visit I can see her fading a little more.  It is next to impossible to hold a conversation any more.  I prattle on about the kids etc and her responses don't make any sense.  She still asks about the kids and I tell her everything but there is no 2 way conversation any more.  I hear tales of her "trips", the trips that don't happen except in her mind.  I hear how my dad is coming to visit her later (Dad died 24 years ago).  It is hard, so hard some days but I have to stay strong, for her, for my family.  I sincerely hope that I don't end up with dementia when I am older, I think it is so, so cruel.

To all the families dealing with something similar, my heart goes out to you all.  It is a rough road and I can see now that it is a road that only gets bumpier, not smoother.

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