Choices and Plans: Turning Tides

It was long ago in January 1996 when it first happened. I had gone to bed and in the middle of the night I woke thinking of my father. He had died the month beforehand. My daughter at the same time had been hospitalised with psychosis and Merv had also been in hospital for an operation. Three different hospitals all at the same time. Merv recovered well. Melanie improved but was plagued with ongoing mental health issues. My father died. I had cried many times but I had not yet grieved.
I remember that warm January night; I began to cry but my soft tears turned to sobs and then I started to scream and sob at the same time. Merv woke and reached out for me. He cradled me in his arms and calmed me. It was a release of my grief.  I had woken our children (then in their teens) and they asked me the next morning if I was alright. Life continued.
Whenever I thought about my explosive grief on that night in January I was always thankful Merv was there to comfort me.
Twenty years later and Merv had just come home from respite. We are back in the carer's role and all is well. I know he might wet the bed as his routine has changed. Two days later we have a speech pathology appointment across town. I am ready for any scenario today. I wake Merv and I smell the unmistakeable odor of urine. I strip the bed, shower Merv and get his breakfast. All is still good.
As he finishes his breakfast he stands awkwardly and rushes off to the toilet. It is not urine this time but the other. It is everywhere and there is no way I can clean him, the toilet, his clothes and get him to his appointment on time. My world begins to slip from beneath me.
I leave the room and seek refuge in my bedroom. I am distraught and I cry and scream until I can no longer bear the torrent of grief which runs unabated from within me. I tell myself to stop. Over and over I beg myself to stop until I eventually do. I sit on the bed and wonder what has just happened. I am a mess. I know this is so much more than toilet accidents. I have cried many times in the past 20 years but nothing like this.
Once again it is consuming grief. Days later I think about the HD carer meetings I attend monthly. They have been more than confronting with horrendous carer stories. I had avoided thinking it could happen to me, but I see now my story is the same as theirs.
It is the grief of losing the man I married almost forty years ago.   Grief of making the most difficult decision of all to place him in a residential care facility within the next 2 years. Grief of not being cared or loved by Merv. I know he loves me but how sad is love when it is can't be expressed. There are no hugs, no comforting words, there is nothing. He says and does nothing.
I shower him for the second time in an hour, clean the toilet and floors and spray the matter off his clothes with the garden hose. I ring the speech pathologist and cancel the appointment.
I send Mel a text message and asked her for a hug. She rearranges her schedule and after Merv is sitting in his lounge chair watching his favourite movie I drive to Mel's house and we hug before heading out to Yahava coffee house where we sit in the sun drinking coffee, eating mandarins and sharing my grief. After an hour we return home and Merv is still watching his movie. I am alright, he is alright. Life is alright again.
I reflect on the past two weeks of respite. I have enjoyed each moment of freedom. Is it cruel to name it freedom? I have trusted the respite centre, visiting family and support workers to look after Merv. I have kept in contact by email and photos. There appeared to be no problems.
In just two small weeks I joined the HD Carer Retreat enjoying the company of other carers while visiting local cafes, restaurants and places of interest.   Afterwards I went to Busselton with Mel. Time was our own. It was so good not to be on a time schedule. We were just a short stroll away from the beach and the town centre. We walked and ate well. It was just delightful.
After we returned to Perth my sister, Maureen visited for the weekend and we enjoyed just going out for dinner, the movies, shopping and stopping at little fresh food stalls in the Swan Valley. We ate home made ice cream in a rustic shed which I had never noticed before.  The weekend was delightful, better than an overseas holiday! It was all the things I needed to do before donning my carer's hat once again.
I've had the time of my life during respite and I've cried this week until I could cry no more. Today I added strategies to help me cope better. We can do this together but the road ahead is bumpy. There will be more trauma but like they say, "It's just one day at a time."