One day the social worker came for a good talk. He said it is easy to get into a timetable of "next treatment, next doctor's appointment" and little else. When he left I rang the library to get a crate of books from the Bookmobile every fortnight and re accommodation in the Blue Mountains. A Bed and Breakfast, sounded suitable, but the very thought made me feel tired. I started by ordering a portable oxygen cylinder. O'Reilly's was out of the question. I agreed it was necessary to have something pleasant to look forward to, for me as well as Ian (not just "next treatment, next doctor's visit"). We both knew that everything would fall to me to arrange. He trusted me to know instinctively what would be positive.
We had to remind ourselves that we had had so many good times together, travelling and doing the things we enjoyed at home and sharing our different but compatible interests. The red brows were bathing in our bird bath. The bush was showing remarkable signs of regeneration after the fire. We were convinced that it was more rewarding to preserve our natural environment than to try to control or tame it. Our lounge room was pleasant but something more was needed. But what?
The nurse brought a shower stool to try and had a good talk. She suggested I get slippers that close with velcro. The bookmobile came with a LARGE bag of books, but there were not many Ian would have selected himself. Ian had a shower trying out the shower stool which he likes. On Thursday we went to town after lunch, first for his blood test, then the shoe shop for Ian to look at slippers. I double-parked to let him out in front of the shop, then parked. The Diabetes Association said try socks from Target. They were so comfortable, I wished I had known about them before. Ian was having trouble with stiffness in his legs and trembling hands. He cut himself shaving and it kept bleeding all evening even after I put a plaster on, some blood got on his collar. The nurse took the plaster off Ian's face with a liquid, without making it bleed. Ian was getting pressure sores on his ankles which are very swollen. He should have been using the air mattress on his bed. The oxygen cylinder arrived and I got the delivery man to put it in the boot. I had to fit in the shower stool and the Rollator as well as our clothes. It was twenty-five years since we had met, and we had shared many travel experiences but due to the inexorable rise in the myeloma, it was getting more difficult. It was all arm-chair travel now, but we would relive our many trips with my diaries and photo albums - two to Europe, several around Australia, one to New Zealand. I would have done none of these alone.
The host at the B&B helped me get out the cylinder and other luggage and brought us a large bowl of excellent soup and bread rolls and a platter of cheeses, olives, ham, artichoke hearts, sun dried tomatoes etc with biscuits and butter as I had ordered. Bacon, eggs, mushrooms, tomato, special bread were in the fridge, croissants were in the freezer. My cousins arrived with Pizza and shared our nibbles. We had a good talk! And the birds in the bush sang outside our window.
Bill and Clare arrived for lunch, we ate half of the "breakfast". After a rest we visited the Norman Lindsay Gallery nearby. The next day Bill and Clare took us to visit Roderick's family and for a drive to Katoomba, to a lookout with the Three Sisters in the background. Ian needed to be helped back up to the car. Then along Narrow Neck which was only a walking track years ago. Back at the cottage we had more soup and nibbles and I began to think about packing. We were home by four VERY TIRED. Ian went straight to bed. It had been beautiful weather all the time and a good four-day break from routine.
More than a dozen silver-eyes were having a bath! BEAUTIFUL! The nurse put the mattress back on Ian's bed, TRY to get used to it to prevent pressure sores. There was a tightrope to walk between giving him some independence in what he did and pushing him into what was for the best. This was not easy but he was getting more compliant while still feeling he was in control of his life.
The doctor wanted an Xray of his back as he had back pain. His Xray results were faxed through, there were no fractures, but loss of mineral density. His red cell count was low, he needed a blood transfusion so we went for the cross match. He had a lump on his arm which was not considered important, but got a script for Oxynorm, a stronger painkiller.
There was a committee meeting of the Plant Society, which Ian wanted to attend, mostly about the path through the garden with which Ian had been involved. We were still talking about four o'clock when Ian went out to the toilet taking only his walking stick. He fell and banged his head on a wall. The men lifted him and got him to the car. His shoulder and elbow were bruised and his head needed stitches. The GP cut his hair and stitched him up. Ian had to sit up to sleep as he could not lie on his shoulder. I had to help with undressing. The next day Ian slept nearly all day, he started another jigsaw but soon fell asleep, did the nebuliser, had lunch, went back to bed with the oxygen. Birds in the bath at dusk often included a fantail who came with some little birds (maybe thornbills?) also blue wrens and red brows and a couple of bigger birds with yellow chins (restless flycatcher?). This was what Ian had wanted - to spend his last days in a natural setting, knowing he had contributed to the local community and the museum and having improved our little piece of the earth.
Emiko and Kathy came back from Japan to book Kathy in to High School. They planned to visit as soon as possible. David stayed on for a while to train his successor.
In November the doctor said the tiredness was not due to the painkiller, more likely the Myeloma causing a big reduction in oxygen, and there was no improvement from the last transfusion (his fifth that year). This was possibly the terminal stage of the illness but he was not typical. He had already lived more than two years longer than the average Myeloma sufferer in spite of his lungs. I thought this was helped by a good diet and lack of stress.
Glen planned to visit soon from Bega where he was now living with his mother and John. He had a cold, but thought he would pay a quick visit on the morning of Kylie's 21st birthday, but I didn't encourage the idea of him making such a long, rushed trip before going to a party. Glen mentioned planning to buy a house when he could, and we agreed if he saved towards that end, we would help. Kylie would get the same in similar circumstances.
Jacqueline, Jordan, Glen and Kylie and a lot of our friends and neighbours were calling by as we were dependent on visitors for social contact. Reading and watching TV required too much concentration. Although Ian was physically very weak, his mind was alert and his unique sense of humour was active.
Ian was walking from the lounge room to the bath room with his Rollator, luckily I met him near the hall, as he became very wobbly, I was able to support him with the help of the Rollator and get him to the toilet. My back was strained!
The pathologist came to the house to do the blood test. The Palliative Care Nurse said that Ian could be more comfortable in the hospital. Ian agreed because of showering, toileting and shaving.
That evening at bedtime I went in to his room to give him his evening medication and Ventolin and he was very hesitant and confused about what he was doing. He looked at me blankly. I put his Ventolin in his mouth, told him firmly several times to puff and had to take the tablets out of the foil. I had always avoided being authoritarian, but found it necessary. It worried me. Was this a mini-stroke?
The nurse brought a wheelchair and monitor, but the wheelchair would not fit through the doors. I wondered if the lounge room could be converted to a bedroom. He would have been most unhappy about using the commode chair instead of going to the toilet. He had a horror of not being able to wipe his own bottom as the ultimate indignity.
The hospital rang to say a bed was available. When Ian woke we talked about it and he agreed, but I was still upset at not being able to look after him at home with the birds and his familiar surroundings as he had wanted. However, realistically it was too risky if he fell. Ian agreed to go after the nurse took out his stitches.
When Jacqueline rang she told Ian a joke she had heard about a frog who went to a bank teller named Paddy and asked for a loan. His only collateral were some little trinkets but his father was named Mick Jagger. Finally the bank manager came and said
"Nick nack, Paddy whack. Give the frog a loan.
His old man's a Rolling Stone"
Ian was most amused.
I asked Ian if he wanted me to contact Sean and say he was going into hospital.
"No" he said "He has never shown any interest in my health or welfare. I just want peace".
But I did ring Glen and let him know, feeling that Glen would probably ring his father.
On Thursday when the men came and took the hospital bed Ian said "I'll need it again when they get me back on my feet". I didn't think he would be home again as he was too ill and weak for me to look after. The nurse took out Ian's stitches, washed his hair (first time for 10 days), showered him, shaved him, got him into clean pyjamas ready to go. He joked with her about his shrunken body. She said she talked to young High School boys about their developing bodies. Older men were concerned about their shrinking bodies. She brought him out in the commode chair to clean his teeth at the kitchen bench and I got him a drink as she left. Ian then got up to move to the Rollator but fell and I had to get Paddy who using all his strength, lifted him got him into the wheelchair and out to the car. He then had to lift him again and Ian had absolutely NO strength and could not stand except supported. He said "We'll have to stop meeting like this." His side was beginning to get more painful but he could still joke. What a special person I had share 25 years of my life with!
"You can bring him some wine or whisky if he would like that" they told me at the hospital. I got some ready to take the next day, although he had not fancied either recently.
I felt relieved that I no longer had the responsibility and that he was in better hands. He had never gone unshaven which he hated. I rang the hospital about 7.30pm, the doctor had been and prescribed morphine as the pain was getting severe. He sounded drugged but able to tell me they had inserted a catheter to save him worrying about finding the bottle during the night. He told me that he had asked that Sean and Norna not be admitted to see him. He had trouble hearing me but said "See you in the morning darling."
Looking back I could see he was rapidly losing strength, but he had many ups and downs and I did not realise this was any different. Glen, Kylie, Jacqueline, Jordan, Emiko and Kathy planned to visit on Saturday. Altogether he had had 15 courses of chemotherapy of milder strength and 12 blood transfusions.
At 7.30 am the phone rang, the Sister said he had deteriorated a lot in the night so I went straight over but he had died without waking. It was the end he had wanted. He had simply stopped breathing. It was a shock as I expected to get used to him being in hospital with good care for a few weeks or at least a few days but his body was completely stressed out. Yesterday I said goodbye to a person with an alert mind, today there was an empty body. I could not believe he was dead. I spent some time with him but it was not satisfying as there was no reaction from him. I could have been with him, but it would not have helped him and I doubt it would have helped me.
I rang Jacqueline and Paddy. A nurse sat with me and made me a cup of tea and said she knew the name from Kiama. I said I had never lived there, so she asked about his first wife's name. When I said Jean, she remembered Jean was always smartly dressed even to go down the street to buy milk. They helped me to the car with his things and I drove home where Paddy was waiting. I felt guilty that I had been glad Ian was in hospital. Community nurses came and took what fitted in the car and rang re the Oxygen Concentrator to be collected.
Norna rang during the morning and said she had been speaking to the hospital and they referred her to me. "What is going on?" I asked her how she knew about the hospital and she said "Never mind". I told her that her Dad had died that morning and she said "How come my brother and I have not been kept informed?" I said she had taken no interest and she hung up. I know she blamed me for keeping her from seeing her father. It never occurred to her that she was never interested in his wishes or his interests. To Sean and Norna we were just "Radical Greenies" because we had an interest in the environment and things other than ourselves.
I left a message for Karen and she rang back about midday. The funeral director came with papers to sign and went through the details. Vera came in the afternoon and brought a slice and we talked but I don't know how I got through the day. Thank goodness the nurses handled so much of the routine notification.
Jacqueline and Jordan came down and we went through the things to be done, for a celebration in our garden, hiring chairs, catering, hiring a piper. After they left I found a poem from Jordan on my pillow which was so beautiful but I could not look at it again. She will read it next Saturday.
You look up in the sky,
at the stars that gleam so high.
You see my face so clear,
I feel you shed a tear,
you feel me say don't cry,
You'll never really die.
Our love has filled your heart,
we'll never come apart.
I'm happy not sad,
You've been the best grandad.
Together we belong,
even though he's gone,
he still has all my love.
Just like a dove,
he can fly,
so just for now I'll say goodbye,
and I love you.
by Jordan, nearly 12
Neighbours dug holes for the tree planting which included a Brachychiton from them to replace one burnt in the bushfires. The chairs, cutlery, crockery arrived. Jacqueline and Jordan arrived in the early afternoon with drinks, a bunch of native flowers and began to get organised for the next day. Jacqueline decorated the urn with tartan material and my kilt brooches and arranged the flowers with a painting of Ian's birthplace and some photos of him.
I was happy to do what I knew he wanted and those who attended said "It was so much 'Ian', a celebration of his life". Sean, Norna and Alison did not attend. Karen, John and the children did. Jo-Ann sent native flowers.
Everything went VERY WELL, even though it poured as we were to start the speeches and we had to crowd into the house. I managed to read what I had prepared and everyone was interested. Jacqueline spoke briefly and humorously about her relationship, including a joke Ian had recently told her. Jordan read her poem, then the piper arrived and the sky cleared so we all went out onto the front lawn and he played tunes as requested by Ian and more. My tears would not be held back. Jordan came over and we held hands. At this time drinks were passed around, whiskey or Bailey's. Then we had the planting of a tree we had won for our environmental awareness, some ashes which had been transferred from the urn to a small vase were scattered. There were more spontaneous short speeches and poems on the lawn from friends. Just right. We were about to listen to my brother Bill and Roderick play when another friend arrived unexpectedly with his bullock team to show Ian, not knowing he had died. A lot of people trouped up to see the team and enjoy the unintended climax to the celebration. Everything was personal to Ian.
People commented that they would like the same sort of celebration for themselves. The day ended winding down with my family, having scrambled egg, toast and music.
The loss was not unexpected and I thought I was fairly well prepared but I was not. Friends took some of Ian's ashes to sprinkle around the church he had renovated at the museum. Our Scottish friend said he was very shocked as Ian had been joking a day or two earlier. He was happy to take some ashes to Scotland when he went on business. I put some ashes in a tablet container and wrapped it in a tartan handkerchief. The scattering happened at his birthplace with help from some of Ian's school friends.
As he had wished he died in peace, had a good and happy send-off and part of him had gone home.
As time passed the things that upset me were the unexpected, rather than anniversaries. I was more involved with the museum and the Plant Society and family. We who knew him missed his special nature and his sense of humour. When I heard of something my first thought was "Ian will be interested in that." It was so hard not to be able to share things with him ever again. I know why some people feel there has to be an afterlife so that those we miss are still available. His ashes had come in an urn, but not his personality. It had to be somewhere.
"Those we love can never really leave us.
We feel their presence like a gentle touch
Whenever we remember moments shared
And do again the things they loved to do.
In some ways they remain with us
Their gentle spirit's part of all we do and all we are."
"To mourn too long for those we love is self-indulgent but to honour their memory with a promise to live a little better for having known them gives purpose to their life and some reason for their death."
"Thoughts of Nanushka" by Nan Witcomb.
* * *
Epilogue. Norna wrote requesting a copy of Ian's will before execution! He deserved a much more caring family. I feel so angry that she is so selfish, no request for a copy of his death certificate or anything but the will. What a complete lack of judgement and compassion! If anyone was ever in doubt this letter demonstrates very clearly what is important to her. She included Sean's name but it is not his signature! That was when I decided to change my will and include only Glen and Kylie of the Bremners. Six months later Glen found a house in Bega he wanted to buy so I sent him a cheque to help him in his project instead of having to wait for me to die. It's what Ian would have done.