Palace of Care – Race Against Time

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I gently knocked on the door and then poked my head around the corner. I paused briefly before walking in and saw him sitting there holding his wife’s hand. He bent down and talked gently into her ear. They had only been married for 62 years, and had been together as a couple much longer. She had looked after him well according to his daughter, he had always been treated like a king. In recent years Dementia had meant that he had needed more care than ever. His queen kept him in line but as her health deteriorated she could not keep up with him.

She had lived with her daughter, son-in-law and had practically raised their children. The grandchildren were emotionally close to her and had spent six to eight weeks with her over the Christmas break before heading back to their overseas-based lives. Since her cancer diagnosis seven months ago, she had been cared for by her youngest daughter. She had to keep a close eye on her husband, as he was a flight risk. At times he didn’t even recognise her as she had recently lost a lot of weight. He would ask, “Who is the nice old lady?” With a few prompts he could be reorientated to the love of his life.

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Guest Post – Naomi’s Notes – Contribution

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When we are born we come with nothing and we go with nothing. In between we try to make a contribution to our family, community and the world around us.

The transition to becoming a caregiver is difficult, the biggest challenge is going from having lots of time for yourself and an ability to make plans, to having no time.  Much like a mother I guess. I was given a ringside seat into old age and death.  Watching the decline, you are forced to confront the mortality of your loved one as well as your own.

High dependency needs mean that no matter how much you love the one you are caring for you get very tired.  The forced isolation can be lonely for a lot of people. My experience wasn’t so much the loneliness but more the loss of “me” time.  Early in the caregiving role when I was able to go out for a couple of hours I would joke with my friends that my visa was up and I had to get home before my visa was cancelled.

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Palace of Care – See the difference Mum?

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The other doctor was Asian too, but he had such sad eyes.

I said to him, don’t look at me with your sad eyes.

See mum, he just told me really bad news, but he did it in a gentle fashion.

That’s the difference compared to the hospital doctors.

He sat down, talked to me, we had some laughs.

He prepared me for the bad news and then delivered it, and didn’t run away.

Sat right in front of me, asked me if I had any questions.

The others sort of threw the bad news at me, and then ran out of the room as if they’ve just thrown in a grenade.

Danger, danger, gotta get out before it explodes.

Hot potato, pass it on, quickly or you’ll burn your hands.

I can handle the bad news, I’ve had plenty of it. Where’s the respect, you just tell me the worst thing in the world, and then you run off as if you are the one who is hurting?

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Palace of Care – Two of a kind

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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.

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Guest Post – Naomi’s Notes – Precious

Part 1

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At school two little six year olds had an argument.  They were both very upset when I called them over to talk to me.

I asked the first one what the problem was.

Pointing at the other girl with a quivering finger she said, amongst sobs, “she called me a F F F FAT BANANA. Why are you laughing?”

“Well,” I said, “are you a banana?”

“No.”

“Are you fat?”

“No.”

“Is it true?”

“No?”

Softly I said to her, “so darling if it were true it would be serious, but it’s not true so it’s funny isn’t it?”

I asked the other girl, “why did you say that?”

“I wanted her to be my friend but she didn’t want to,  so I called her a FAT BANANA…  Naomi,  I really love bananas.”

I smiled and said to her, “darling if you want someone to be your friend, that’s not the way to do it. First you  have to  help them if they need help, be kind to them and laugh at their jokes.   Then they will want to be your friend because they can see that you are a kind and caring  person.” 

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Palace of Care – Opportunity Cost

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In my misspent youth I studied Economics during high school and into my first year of university. Opportunity Cost is the cost that you incur when you make a choice. Because you have chosen A, you miss out on B, or vice versa.

The New Zealand school ball is an important event in a young lady’s life it is a coming of age event. The proud parents will see their daughter off for her first school ball. This can be a big deal especially for the father. The ball was scheduled to take place in a week’s time. Our patient had his blood tests done as he was looking pale, was fatigued, and slightly short of breath. Symptoms and signs of anaemia, low red blood cells in his body. His counts were dangerously low, and if we didn’t do something about it, he was at risk of dying before the day of the school ball. He really wanted to be there for his daughter, it was his only chance at providing the whole family with this milestone memory. He agreed to our plan of transfusion, a top up to give him the best chance of being there for his daughter.

In the days after the transfusion he was able to walk further without losing his breath, his thinking had sharpened, almost as good as normal. Looking in the mirror his skin tone no longer reminded him of the vampires from the Twilight series that his daughter and her friends all loved. He would make it to the ball, and the whole family was excited about it again. They could proceed with the pre-ball party at home, he would go home for a few hours of leave. A nice dose of normal family life to break up his cancer story if only for a brief respite.

After the weekend the pre-ball photos were shared with us, and they were lovely. The only clue to his illness was that Dad was thin, and looked tired in the photos, otherwise a beautiful New Zealand family celebrating a special night together at home. A snapshot frozen in time, if only the image would stay like that, no changes occurring, no one deteriorating, no brightness fading from their eyes. But that is still life, real life is about the changes that occur with each passing minute, hour, day, week.

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Palace of Care – Hold On

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We’d been trying to admit her for weeks, but she had not been keen. We had her on the admission list for a whole week but she said that she had to sort out something for her children and couldn’t come in. I thought that it might be an excuse, as a lot of people are still scared of hospice. Most people have not had anything to do with hospice but they may have some pre-conceived idea of what hospice might be. Often this is inaccurate, and can generate a lot of fear.

It took some convincing by the hospital palliative care team before she would finally agree to coming in to hospice. She was still nervous but her favourite cousin had promised that she would go in with her. They had grown up together and they were best friends, but this had been taken to a completely different level once the cancer diagnosis had been made five months ago. Something was wrong as she had lost a lot of weight, without trying to. Life had been busy for many years with her five children, and her partner could not always be counted upon. It was her cousin who had attended all the Oncology appointments with her. Her cousin had been there for all the chemotherapy sessions. Having her cousin accompany her to hospice was comforting and if there was anything scary, she would be there for her.

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Bedside Lessons – 21 – Overcast Sky

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100 years ago, when I was still a trainee registrar, I asked myself, “what were we going to do?” I was about to admit the kind of patient that hospital doctors would be eager to transfer to the local hospice. I’d done exactly that in my previous hospital role, but I was then working in the local hospice and would have to deal with the situation myself.

She’d been nauseated for two weeks in hospital. They had tried everything and nothing had worked. The last weeks had been rough for her, and even in that short amount of time she had lost weight. Her appetite was suppressed to nothingness, as she felt too sick to eat anything. The mere sight of food put her off completely.

After I finished the admission I felt miserable myself, some of her misery had rubbed off on me. Was this transference, or counter-transference? Something about the situation that she was in made me feel similar to what she was going through herself. What to do? One option was to stop all treatments and start all over again. That’s what I did.

The next day I found myself leaving the miserable lady until the end of the ward round. I did not want to catch her misery again in the fear that I would spread it throughout our inpatient unit. I was trying to avoid her as yesterday’s experience had made me feel worse for wear. She had made my heart sink and so I put her off for as long as I could. Things hadn’t really changed much, and I had another dose of misery before lunch time.

By day three I felt bad for being unsupportive of the patient and I promised to myself that I would try harder to connect with her and decided to see her earlier in the ward round. It wasn’t her fault that she was so miserable, it was the illness making her so, and we hadn’t been able to control her symptoms. Walking into her room I braced myself for the tidal wave of negativity. I held onto the door jamb as I entered her room, expecting to be sucked into the black hole of her misery.

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Palace of Care – No Surprises

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Is it the medication making him drowsy, there’s been a big increase in the medications since yesterday, I want them cut back down again.

I’m really worried about your Dad. I don’t think it’s just the medications changes causing him to change. His pain and nausea have worsened a lot over the past three days. It’s a shame as he was doing so well the other day.

It’s not right, he should be getting better, not going backwards. You know he was an alcoholic, I’m worried that he’s become addicted to the pain killers. He hates being confused, that’s what he was like when he drank, he really doesn’t want to go there.

I don’t think that addiction is the problem here, his pain and nausea are worse, I think it’s the cancer causing this. If I decreased his medications now, he would become much more uncomfortable. I don’t want him to suffer.

What about his radiotherapy appointment, that will give him a boost right?

He’ll get the side effect right away, but the benefit might not occur for some weeks. I’m really not sure if he has weeks left to live. I’m worried that if he keeps on deteriorating at the same rate, that he might only have days left to live. We usually say if you are changing over months, you might have months left, same applies to weeks and days.

Really, you think he might only have days left?

Yeah, so I’m not sure that he will be well enough for radiotherapy. I know he wanted it and so do all of you, but I’m not sure that he will be well enough to make the appointment.

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Guest Post – Naomi’s Notes – Acceptance

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It had been one week since her husband passed away when she went to the cemetery to visit him. She wanted to go earlier but she had been too unwell.  She was tired from the effort of walking and was grateful she could rest on the seat of her walker.  She made her way slowly to her husband’s grave.  In the distance, she could hear the sound of someone sobbing.

She sat looking at the headstone and replayed in her mind memories of when they were together.  It was not her first experience of death, having lost her two year old daughter many years ago.

She recalled many weeks spent at the cemetery mourning her loss.   But then one night she had a dream of angels in a line descending from the sky, each one bearing a candle in their hand.   Then she saw her daughter but her candle was not alight. She rushed towards her daughter when she heard a voice telling her that it was her tears that kept her daughter’s candle from burning.

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