Life is full of changes. Change is one constant you can count on always being there. Things happen and you have a choice to make. Whether to accept the changes or not. My injured right middle finger has led to some adaptations in my daily life. I have been using my left hand a lot more than usual. I have had to count on it for many of the things I do daily. For example, I have had to modify my showering and toileting. The application of armpit deodorant and body moisturiser was difficult the first few times but the seldom used nerve pathways supplying my left hand have had to spring into action. Dishwashing and cooking have become newer left-handed experiences.
I have had to modify my typing style. Have I consciously avoided typing the word ‘milk’? Or was it another symptom of my adult lactose intolerance? Problems of this ilk never troubled me before. Likely they will disappear once the finger has healed. I hope it will heal and I am not left with a permanent disability. I’ve had to perform physical examinations with my left hand. What other effects has this partial left-handedness had on my brain?
How would it feel to permanently lose body functions? These are situations which my patients have to grapple with. Incurable illness can lead to permanent loss of ability – disability. This may lead to the permanent loss of jobs and other important life roles. The losses all add up and add to the burden of suffering. When your actual whole person is threatened, and life as you knew it will never fully return. Each loss is grieved over and may or may not be accepted. A distressed physical body affects the emotions, affects the spirit, and affects your family/community. The ripples can affect many people in the wake of the initial insult.
How do people stop themselves from falling into despair when there is nothing guaranteed apart from ongoing deterioration? Some people cope well, others don’t cope at all, and most people are somewhere in between. A rock and a hard place? They need help, guidance and optimisation of community support. What can be done to make life less difficult? Which services or staff members need to be involved?
A mother, grandmother, and great-grandmother died. This news spread quickly around the world. Condolences were sent from many different countries. Nothing would ever be the same again for her family or their world. An end of an era. She had ruled for many decades and the whole household had to be on its best behaviour. Nothing would escape her notice despite the loss of major senses.
They were constantly reminded of where they had come from and who was responsible for their comfortable lives. She was ancient when her reign finally ended. There would be mixed emotions. Sadness would predominate but if everyone was being honest it would be twinged with some relief.
In her day she had been formidable, nothing could stop her from bending the will of others. The last years had become increasingly difficult. She required loyalty above all. Her body wouldn’t answer the mind’s questions anymore.
She caught COVID from her great-grandchild who had brought it home from a school camp. She survived it with no ill effect. If anything the virus seemed to sharpen her failing cognition.
Too many falls over the years but the last one was the worst. Concussion and almost death. She went into the local hospice and survived for several months after discharge.
We paid our respects with four generations of members gathered to say goodbye to her.
I first met our reluctant patient in the outpatient clinic with his girlfriend. It had taken a number of phone calls before he would come in for assessment. He was scared of hospice and had resisted his Oncologist referring him to us. He didn’t know what we were about and what he didn’t know frightened him.
He had been unwell with cancer for over a year with severe pain making him unable to sit or lie down for more than an hour at a time. Sleep was difficult for him and he was woken up several times a night by burning pain that spread down his right leg. He wasn’t keen on any changes in medication, and it took much negotiation for him to allow us to increase the doses of the pain relief agents he was already taking. He didn’t want to consider anything new, just yet. As his pain was so severe I offered to admit him into the inpatient unit but he wanted to stay at home.
Over the next month, his pain did improve but any relief would only last for a few days at best. We again offered to admit him for pain control but he still wasn’t ready. Some weeks later the pain had worsened bringing tears to his eyes. His mother and girlfriend were exhausted and felt helpless as they couldn’t help reduce hisWith encouragement from his mother and girlfriend he agreed to be admitted.
We started him on a different opioid that afternoon. The next morning he was full of smiles. He told us he was pain-free for the first time in two years. He stayed a few more days as we helped him with other issues, and then he went home. As well as good pain control we had built a trusting relationship that would help during his next admissions.
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.