Sometimes in the past people have seen me as something I am not – a cross between Wonderwoman and Mother Teresa - saintly, selfless, able to do more than most people, fully able to cope with whatever comes along. And of course I am none of those things - I am just a person doing what she can for whoever asks for her help. At some personal cost, as all caregivers and nurturers realise but I’m happy to do it anyway. It helps makes some sense out of all the experiences I have had.

Now I am a long distance caregiver, not a hands-on one, more transitions are taking place in my life. I am seen by some, my older son included, as "having nothing to do". I think a lot of people did realise the busyness of being a caregiver with all the added responsiblity of thinking for two, planning for two, working for two etc, now it is the anxiety and despair all this causes that is not recognized. This may have changed to a dull ache, a worried, sleepless night when the seizures and other medical crises occur, more phone calls, longer visits, or even two visits in a day.

At Ray's nursing home I want to help Ray but am helpless to do much now Ray needs up to three people to help him shower, change, dress etc. I wish we could go back to the stage when it was possible for me to do all of that for him. My job is more like a companion, bringing news in from the outside world, liasing with the doctor, talking to the staff, and then at home phoning family members and passing on news. I still oversee a lot of what is happening in his life day to day though.

My next door neighbour has “rescued” his Dad who usually lives in Sydney but has had a series of falls and broken some ribs. Neighbour brought him home thinking looking after Dad would be easy. That is never the truth, all caregiving is hard. He finally came to the realisation that his shower over a spa was not something his Dad could access. The solution was to ask if he could use Ray’s shower, so tomorrow we’ll try that. It is a bit weird I suppose having a neighbour in to shower.

The friend of neighbour’s I sat with last week is recovering in hospital now. He was sent home from hospital too soon after what should have been routine day surgery. Because of a drug reaction he became very ill, luckily decided on an ambulance and a return to hospital or what was a near disaster could have turned into a fatality. I felt a bit of a failure after that one, but at least the cats got fed by me while everyone else was away.

Ray has kept relatively well the past week; it was Mum I was called to go to on Monday. She certainly looked deathly pale when I saw her at the nursing home, with shallow breathing and low pulse rate. I just usually sit alongside her bed, holding her hand until she resurfaces from what are probably seizures like Ray is having. I just need to be there until she comes around again, to make sure she is fine. Once again she could have been dying but rallied and was okay, the next morning she was sitting up and eating again. She is such a frail little person yet must have a mighty strong heart to keep on going as she does.

I have had a lot of odd jobs to do this week as well as continuing to pack down for the move of Trev, Edie and Lucas to my house. That happened this week and although there is much more to be done to clear out the small house they were living in a lot has been achieved. We can now sit and watch television of an evening, we can work in the kitchen, together and singly, and Lucas and I are establishing a tradition of having our breakfast together out on the front verandah on the dry warm mornings. We also play ball out the back when I have the energy.

Lucas came to see Ray with me on Saturday. The staff are pleased to see “family” and as we sat with Ray at lunchtime Lucas got two small servings of dessert, a pineapple pudding with ice cream and a pink milkshake. I sat over a cup of black coffee as usual and Ray had his easy eating meal of veal casserole with vegetables followed by yogurt. It is good to have Lucas’ company and good for Ray to go with us out the back where there is a park and watch him kicking a football around or riding on his skateboard as he did this time. When he got too hot doing that we were able to sit under the shade of some trees and just enjoy being outdoors.

Ray has hardly any lasting memory now. I asked him yesterday afternoon what he had done for the day: “Nothing, just sit here.” One of the aides said to me: “Wasn’t it great Ray won at bowls today?” This is a game of closest to the jack or kitty whichever you call it and each resident who wants to play has two bowls to bowl at the jack. This is carpet bowls using a long rectangle delineated by tape in one of the big lounge rooms, luckily no bias to deal with which makes it easier for old folk. Ray must still has his eagle eye when it comes to bowling.

I am glad they are taking him to as many social events as possible and out on at least one bus trip a week. I want him to socialise until he is bedridden and unable to do so. It is such a pity that these events, bus trips, word games, bingo and bowls happen but leave no trace in his mind. It is as if shortly after they occur the slate is wiped clean. I know dementia progresses and there is nothing I or the doctors can do about it. I am glad he still knows who I am and how we are related but I am wondering how long that will last.

Yesterday I sat in front of a giant Christmas Stocking at Bay Village, our shopping centre with an ex-Lions’ Club District Governor, who is a a member of our Club, and sold raffle tickets. The Stocking is a big fundraiser so we sell tickets for six weeks, eight hours each weekday, six hours on Saturday and Sunday until Christmas Eve afternoon when it is drawn. The roster takes a lot of staffing but sellers also disseminate knowledge of Lions as purchasers often ask questions about Lions Clubs and our Club in particular. I met last year’s Christmas Stocking winner who said it was a shock when he got the call but the family enjoyed dividing up the contents, giving some away to friends and neighbours.

Charitable institutions such as Lions are finding it harder and harder to recruit members so we are delighted we have had two new members since June and one more to be inducted soon. I found being a Lion strange at first but now enjoy each meeting and the company of other Lions in my Club. During the ticket selling period I have eight four hour selling stints so will get to meet up with some of my friends who use Bay Village for shopping too. It is strange how many people I am acquainted with who shop there. I find it an enjoyable form of volunteering. Sadly Ray was always my selling partner right up till the end of last year but now that is way beyond him.

So my life between now and Christmas will show some changes. I need to go to social events I always went to with Ray, on my own. No sense in hiding away in a corner and being miserable (though I do some of that too) I need to participate in life. I miss Ray being here so much. It is as if something is always missing. I miss him in the house, on the verandah, in the car when I drive somewhere. I know he and I should be together. It is simply not possible now.