I have been packing up my house so that Trev and family can move in. Originally they were coming to help look after Ray but when Ray had to go into care I decided they might as well move in anyway. They want to save a decent deposit on a house and I want them to be able to do that so it is only supposed to be a twelve month’s arrangement. Trev has been so good to Ray and I and it was partly due to his help that I was able to have Ray at home for so long. I feel as if I want to do something that will help him out now. All the time I needed him he went out of his way to be helpful.

He and Edie and Lucas are off to see “Mary Poppins” the musical in Sydney tomorrow, they won tickets to the show and an overnight stay in a nice hotel in a radio contest. They were to go next week but managed to get tickets for tomorrow night as that suited them better. They will leave after lunch and settle in before going to the show. Neither Trev nor Lucas has seen a big production musical before so they are in for a treat.

I had a disappointing visit to Ray today. I had other things to do this morning so didn't go to see him till mid-afternoon. When I arrived he was wheeling himself around in his chair. As it was a lovely warm afternoon I took him out into the shady part of the courtyard garden. When I looked at him I saw he had what looked like a mobile phone poking out of his pocket.

When I asked him whose it was and what he was doing with it he said: "I have been ringing you to come and take me home." He hasn't done that for a while. At the hospital he talked someone into ringing me a couple of times so I had emphasised to staff at the nursing home that it is like a fantasy to him, going home. Luckily he needs someone else to dial the phone for him as he only half-remembers our number, we have had two digits added in the last five years and he never remembers to add them. I suspect the staff member who gave him the phone knew that and so decided he was safe to have the phone.

His theme then for the rest of the visit was "I want to go home." I tried to change the subject but that is all he would talk about. When I explained that I wasn't "allowed to take him home”, not until he gets stronger, there are too many safety issues etc, he turned his back to me and wouldn't talk to me. In the end I returned him to his room. He still wasn't talking to me and had one of the other men call the nurse so he could get into bed.

The nurse came out to see me and asked if it was what I wanted, I said no but to go ahead and put him to bed if he was insisting on it, which I could hear he was. I didn’t want to make a fuss and get his blood pressure raised as he might have gone into another seizure, another reason I cannot take him home. I felt as if I had a rock in my chest where my heart used to be and cried all the way home.

It is not an easy thing to admit that Ray is beyond my help now but he is. It is so dreadfully sad after 43 years of marriage. I am trying my best to put on a brave face and trying to reach a new normal but many times I just can’t face the truth. I have been sorting out boxes of old photos and there we are, young and happy, looking like a married couple, at dances, at weddings, out with the family. We had many good times and only since the major strokes in 1999 has life been tough on us.

Being separated but not widowed or divorced is a very strange position to be in. My friends think it is great I finally have Ray in care and can now achieve some sort of life of my own. So far I have only done that in a very limited way. The separation is too raw yet and I don’t feel I want to take on something new or make any changes. You can’t move on with your life when you are still firmly attached to your partner.

Ray needs me as his spokesperson and interpreter. I have to make all his decisions for him. I have to pass information to the doctor and to the staff, provide him with clothes, recommend treatment, look after his financial arrangement and pharmacy needs. There are so many things I continue to do even though technically others have taken over my caring role. I am guessing it will be that way for some time, probably for the rest of Ray’s life and that could be some years yet as he is still a relatively young man.

Although the nursing home can never give one-on-one care like I can on the whole they have been very good. They seem to have an idea now of what Ray likes and dislikes of how to approach him to get his co-operation, of when to ring me with a problem and when to try something out themselves and see if that works. He has been out on the bus twice, is taken to the community rooms for “concerts”, special morning teas and out to the courtyard for a BBQ lunch, all without prompting from me. That compares favourably with where Mum is.

I am just very lonely and my life seems very empty.

I asked Trev today if we could bring Ray home, just for a couple of days and see if that worked. He said firmly: “No Mum that would just upset both of you, you know that.” And I do. I am upset now but can imagine how much worse it would be if I brought him home only to take him back in a worse condition. Seizures, falls, TIAs and mild heart attacks have changed Ray even over the past few weeks making him harder to look after and in need of more people to look after his needs.

This is not just my story, it is the story of many in our community whose partners have serious medical, emotional and mental conditions that modern medicine as yet has no “fix” for.