Palace of Care – Strongest

Photo of Cassia Fistula by Winston Chen on Unsplash

“Hey, long time no see.”

“Hello Doctor, how are you?”

“I’m good, how are you doing?”

“I’m sleepy and tired, that’s what I do. I sleep most of the day and the night.”

“Do you have any pain?”

“No, the pain is well controlled. The urine is still bubbly. Why is that?”

“Your cancer has caused a connection between your bowel and bladder. It’s called a fistula. It’s a sign that it is getting worse.”

“Yes, I am getting worse. I felt so unwell the other day. I thought that my end had come. I just felt so deeply tired. I couldn’t get out of bed for two days. My family and the hospice staff thought I was going to die.”

“Then you woke up again today?”

“Yes, and I’m going to spend some time at home. How long have I got left?”

“I don’t know. I thought you were days away from dying a few times over the past weeks. You keep on proving me wrong, over and over again. You’re stronger than most humans. I think you’re the strongest person I have met in my 15 years of working in palliative care. I don’t know how you do it.”

“I don’t know either. I feel so tired, but I keep on hanging on.”

“You’re being yourself. I wish I could be more accurate with your timeline. You are deteriorating but your willpower is still strong, but your body is fading.”

“Yes, my memory has gone, and I talk to people who are not there, sometimes for a long time.”

“Is that distressing you?”

“No, it isn’t too bad. I can handle it but I get irritated sometimes.”

“Let us know if it gets too annoying, and we can adjust your medications.”

“Okay.”

“You enjoy your time at home. I’ll see you tomorrow.”

“Thanks Doctor.”

Palace of Care – PI – Palliative Investigator

Photo by N. on Unsplash

She was one of our community patients, a lady in her early forties who had been deteriorating over the past week. We were able to control her physical symptoms well but there was a deep underlying sadness deep inside. She was able to accept that she was dying, that she would be leaving behind her 18 year old daughter and her husband. That was not the cause of her upset, our counsellor went to see her at home to see if she could find out what was going on.

What was causing our patient so much anguish? She was well supported by her husband and daughter, and other family members were helping too but as our patient became less conscious her agitation and distress worsened. Was it an end of life delirium or was there something more going on? Her husband said that she was still looking for Mary.

Mary? Who is Mary?

Our daughter.

But your daughter is not called Mary.

Our older daughter.

Oh we didn’t know you had another daughter.

She was stillborn when we had her 20 years ago. We were young and didn’t have enough money to properly bury her. We only had a few hours with her before they took her away. We never found out where she was buried. We looked for the first two years but our English wasn’t as good back then, we had just moved over from the Islands. We never found her, but we’ve always missed her. Especially my wife.

There was a mystery to be solved, I had to find out where baby Mary was buried, with only her full name and date of death. I had no idea how to start the search, so I asked around my colleagues. Thanks to everyone who suggested that I contact the local council. A quick search of their website found a section where you can search for burial locations online yourself. This did not yield any results, but led me to another section of the website that allowed me to send a query email.

A few days later a real human answered, and suggested that I email someone else. Two days later I was sent a reply with a picture of a map of the cemetery with a highlighted area within which the baby had been buried. I printed out the map and our counsellor rushed out to deliver the information package to the couple. Time was of the essence as our patient was deteriorating rapidly and was in danger of losing consciousness and clarity.

Two days later our patient died peacefully at home with her gathered family, her distress had settled down once she was told that Mary had been found. The bereaved husband’s were red and swollen, but he smiled when he told us that his wife knew where to find their long-lost baby and could pick her up on their way to heaven.

I think therefore I am? – A toast to absent friends and family

Photo by krakenimages on Unsplash

Periods such as Christmas may be a stressful time for a lot of folks and this year things have once again been magnified by COVID.

There will be some people missing from Christmas Lunch/Dinner tables this year.

Unfortunately over the past 13 years my own family table has become increasingly spacious.

That’s the harsh reality of death and dying, it doesn’t take into account public holidays or religious occasions. Death’s calendar is not an Advent calendar and the countdown to the final day is not so clear-cut or accurate. We say to the families we work with in our inpatient units,  if your loved one can’t go home for Christmas please feel free to bring a bit of home into our hospice for Christmas.

For some people it will mean that Christmas,  New Years and other important milestones, might have to be brought forward as they may not be able to make it to the actual date, even though it is only a day away.

No presents can replace actual presence, but sometimes virtual is the best that we can do given the COVID-normal global situation we are living in.

Please take a moment to reflect on why we do, what we do in the practice of palliative care. It’s in order to help our fellow human beings. Decreasing suffering in all of its forms, not just physically, but emotionally, spiritually and familially/socially. That is what it is all about. We are here to support patients and their families through what may be some of their toughest times.

A continued work in progress.

Thank you all for reading.

Wishing y’all all the best for the festive season and a better 2022.