Wednesday, April 24, 2013

The Long Goodbye continues...

In February I got another call from the nursing home. It was 1am in the morning and I could hear the phone ringing somewhere in the distance. I stumbled out to the lounge room and answered the phone with a groggy voice, trying as hard as I could to sound alert and sensible.

It's your mum, she has had a sudden deterioration, she's dying and I don't think she has much longer. I don't expect her to make it till morning.

I feel that deep struggle for calm in the pit of my stomach - at the same time the nurse is giving me more details and my old nursing  brain is assessing the situation. Yes, I agree with her, after hearing her observations, this IS it. As the nurse says " I know she has pulled through before, but she is not going to pull through this time - she's dying." She checks with me once again - not for resuscitation - not for hospital transfer.

I feel incredibly calm now. Calm because I need to do what needs to be done. I've always been like that - calm in a crisis, calm when there is distress around me. It's a blessing and a curse.

I make several phone calls and then I call the nursing home back. I will wait till daylight to come down. The back roads I travel are too dangerous in the middle of the night. I will call again before I leave.

I carefully pack everything I will need for the funeral service. I phone before I leave and they tell me she is still here somehow.

We sit for the morning bedside vigil. I could be OK here, on my own just sitting. Why must they try and comfort me, talk to me, chatter mindlessly.  Inside I want to scream to be left alone. Let us walk this last part of the journey together, just mum and I. I'm OK with her, with her dying, with THIS. Why can't people just BE?

After lunch I can stand it no longer. There is no peace here for me. The time alone I want with my mum is a dream, a wish a fantasy of how I thought it would be. I let it go and accept somewhere inside of me that I have no control - surrender...

I go out to the cemetery and we organise and pay for the plot. It needs to be done and it's one less thing that I'll need to do tomorrow.  We are all exhausted, but after dinner I go back to the nursing home for a while. She is worse, her colour is blue/grayish, pulse is weak and thready. Yes, it will be tonight.

I decide I will not stay and try and sleep in a chair. I tell the staff to call me and fully expect to be woken up - my clothes are ready to step into and the phone is next to my bed. I'm staying less than five minutes away.

Sometime in the morning I wake up to find it is daylight - no one has called. When I arrive she is responding a little. My heart sinks...  As the morning goes on she improves, eats a little thickened fluid for morning tea. Her pulse is stronger now, her colour improved.

I want to shout and shake my fist at something, someone. What cruel, sick twist of fate is this?  SEVEN YEARS  of suffering. To lie in a bed, being turned very two hours, her once overweight body is like a skeleton now, bones showing through her skin, sunken eyes that recognize no one.  WHY would this horrible death be prolonged again and again?

Outwardly of course I have I have it all together. But I'm just done with this. I am done with walking up to the brink of death and then taking a step back. I am done with this private hell of anguish that I carry around every day that is unrecognised, unacknowledged.

I feel like a stranger here. The staff don't really know me, they have their own relationship with her. They just see an absent daughter who visits every few months. I, who was my mothers carer her whole life, feel like an outsider here. I look around the room and see that other photos dominate the room, photos of her with other family members, or attending things at the home.

I am not a part of my mothers life anymore.

It hits me like a rushing wind that I am not really her carer anymore - I have been replaced. I feel redundant in my mothers life now.

We stay another day. I do all the right things and listen to staff and put up with the chatter. They are good people, they love mum and I wanted that. Early in the morning on the day we leave I go in early, and finally manage to snag an hour alone with her. We sit in peace, in silence together... this is all I wanted - I soak it up, Then it's time to go.

Time to go back home, to work, to explain that my mum pulled through again, to continue to walk and talk and 'live' life as if it's all OK.

Yes, my mum is dying from Alzhiemers. It's been seven years now... and it's not getting easier...