Palace of Care – Two of a kind

Photo by Fallon Michael on Unsplash

He was never alone when he was young, his sister would always be with him. They started off their friendship in the womb but didn’t really see each other for the first time until they came out into the light. Ah, that’s what you look like, quite similar to me, but different. I’m the oldest out of us two, even if it is only five minutes between us. The eldest is entitled to greater respect. Their siblings suddenly had two more siblings to make up the family, a little boy and a little girl.

They went to the same schools all the way through primary, intermediate and high schools, and it was only in university that their paths diverged. Ending up in different careers and then meeting their partners, always maintaining the bond of their twin-ship even across thousands of miles of ocean. The next generation would also have multiple births, he and his wife had a set of twins but unfortunately their little youngest did not survive. One of their biggest tragedies, the death of a child, so against the natural order of life. Life had to move on, they had the rest of their children to bring up. Life was busy with work, family was always emphasised as being the most important.

Children grow up so fast, and theirs became useful additions to society, good people that he had guided to adulthood. He was proud of them all, and then the grandchildren arrived to make a good life even better. Lovely young kids that enjoyed hanging out with Grandpa and Grandma, also lovely that at the end of the day they could be given back to their parents. Grandparents are there to provide good fun, but not to be the unpaid caregivers was their policy. It had worked so far. Their overseas daughter video-called them, they hadn’t seen her in person due to the effects of Covid over the past two years. She couldn’t contain her smile, she glowed when they talked to her. “Mum, dad I’m pregnant, it’s going to be twins!” Continuing the family tradition into the next generation. Things were really good.

He had decided to cut back on his work hours, as he wanted to spend more time with the family, especially the grandchildren. Despite working less hours he was more tired than ever. His appetite had worsened and at times he had trouble passing water. He went to see his doctor and this started off a hole cascade of tests and procedures. He let his twin sister know what was going on, as she understood having had her own share of health issues over the years. She would accompany him to some of the appointments when his wife couldn’t make it. Two heads are better than one when trying to understand new material had always been their motto from childhood. Bad news was how they summed up the first appointment. There would be a series of operations cancer caused his problems. There were treatments available but it would be the start of many hospital admissions and doctor visits. With good support from his family he did well. His overseas children kept in touch as much as they could using video calls and text messages, everyone was kept up to date.

The newest set of twins was born only four months ago and it was lovely to see their little faces, a little boy and a little girl. One time his twin sister was at home when they called, and the older set of twins were able to see the much younger twins. If only they could do it in person. Over the next two months it seemed that every time he went to see the Oncologist, he would end up in hospital. He was having trouble maintaining his fluid balance. Some of the hospital admissions were short, some were longer. The food in each one was…not great. He had always loved his food, but the hospital food was one of the things that made him miss home even more than he imagined was possible.

Three weeks ago he had gone to see his Oncologist and was found to be dehydrated, but that couldn’t explain the bad pain in his lower abdomen. Crampy pain that wouldn’t leave him alone for more than two hours. He was also sweaty, and tired, he was worried he had caught Covid. Off to hospital again, and the Rapid Antigen Test was negative, not Covid but the temperature suggested infection. More scans and eventually an answer, deep inside his pelvic cavity were collections of infection. They explained that his cancer had caused his small bowel to erode through to the skin of the front of his abdomen, that’s why his old surgical wound had started leaking. The smell had been horrible, and had made him gag. Things had improved when they put a stoma bag over the wound in order to catch the liquid.

They started him on high dose antibiotics which helped his pain. The infectious diseases doctors warned that because of the communication between his small bowel and skin that they would not be able to cure his infection, but they hoped that they could suppress it for as long as possible. His condition improved and he was keen to go home. He had not really moved out of bed much in the previous weeks and he was deconditioned. He needed more time before going home. His doctors and the hospital palliative care team suggested that a short admission to the local hospice for a spell of rehabilitation would be good. His first questions was, “how’s the food there?” “I’ve heard it’s pretty good.” “Sold, when can I go?”

First time ever in the hospice, not quite knowing what to expect. The staff were welcoming, even though it felt it had taken all day before the ambulance arrived to pick him up. he arrived later in the afternoon. “No changes today, we’ll see how you go,” was what they said would be the plan. The food at the hospice was much better. Small well presented portions appealed as his appetite was not back to normal. Little touches like a little card with his name hand-written. A tiny vase with flowers from the garden was an especially nice touch. The food tasted like it was home-cooked, just what he had missed the most. Best meal he’d had in weeks.

Over the next days they planned for transfer home as he was doing well. Pain relief needed adjustment as the pain had become a bit worse, but nothing he couldn’t handle. Good news as border restrictions were easing, and his daughter, her husband and the twins were on their way to New Zealand. The doctor had brought tears to his eyes when he had asked what was the most important thing for him, “Family.” He knew that he was really unwell, but he just wanted to see his children and their children. To meet the little twins would be wonderful. If everything went to plan, next week he would be able to see them all at home.

He woke up on Monday, not really aware of what had been happening in the weekend. His wife and their eldest daughter smiled at him but had blood-shot and puffy eyes. They told him that he had been really unwell, confused, with low blood pressure. They had called in his twin and other siblings as they were concerned that he wasn’t going to survive. The change in treatments had helped him, and he improved over the second half of Sunday. By Monday morning he was back, but had had no memory of the past two days. The whole experience had given his family a real scare, and they started staying the night with him. Thus he had time to have some private conversations with each of them, including with his twin sister.

The medical team shared their concerns with him, “too much is going on, we were afraid that we were going to lose you during the weekend. No surprises. We think you might only have days left to live. We fully support you trying to see your family members.” With his voice constricted by swallowed tears he thanked the team for being frank with him.

The staff had written to the Managed Isolation and Quarantine (MIQ) service explaining his predicament, and they seemed to be willing to help, as the Omicron surge by now was meaning thousands of positive cases, throughout the whole country. Plans were made for his daughter and her little family to visit the next afternoon. He was so looking forward to seeing her, and the two little ones, his sister would come over too. He could hardly sleep that night as he felt his wish was just about to come true.

Overnight the little girl had a temperature, so the visit was postponed. They would try again the next day.

His daughter had dressed the babies and they were going to be allowed out for a visit in half an hour, the parents just needed to have the final Rapid Antigen Test before heading out. They did the swabs, and waited for the results. Within an hour the babies would be meeting their grandfather for the first time. He had sounded so excited when she had called him, he sounded good. The tests take 15 minutes to run, but it seemed much longer, the liquid making its way up the test card. The control line became red, and in the first five minutes nothing else. So far so good. Another seven minutes and her test was still looking clear. Eight minutes, nine, ten, all good. 13 minutes and her test was clear, but her husband’s started going faintly pink, then darker. No, no, no, positive…arrgghh.

Everyone had tried their best but the bloody virus continued to stuff up plans, barely 30km away, after having traveled thousands of kilometres, but unable to meet each other in person. As he spoke to his daughter on the phone both of them tasted the flood of salty moisture that could not be held back any longer.

He deteriorated over the next days and became confused again – an end of life delirium, slipping in and out of lucidity.

He was able to see his daughter and her little family via video calls, but he wasn’t quite the same.

A little baby boy’s hand brushed his baby sister’s eye and she started to cry.

A twin sister kissed her elder brother’s forehead goodbye and she started to cry.

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