When Anna was first diagnosed with Parkinson's Disease (PD) and Dementia, he researched these illnesses, by talking with his doctors and social workers, searching the internet, speaking with people who either had these diseases, or were caregivers to people who had these diseases (including his younger sister). He has known for over 8 years that he has an unrelenting and inescapable degenerative disease with no cure and very high variability in the rate of disease progression.
In the last stages of the disease, over 40% of patients die due to respiratory infections, mainly pneumonia. The other major cause of death is as a result of being unable to swallow (patients are often artificially fed through a PEG tube).
Anna knows all of this. We have talked about the symptoms / precursors of end-of-life. He does not want any extraordinary measures to prolong life. He wants only comfort care. His doctors and I know this.
I am used to Anna telling me that his throat is seizing-up, or that his voice is changing indicating that he is at the end-of-life stage. I don't pay these comments too much attention as he is eating OK and I can understand what he is saying 95% of the time (no pronounced slurring).
A month ago he tells me that he has a growth in this chest and asks me to feel it. I do. There is a hard hump that I believe is his rib protruding out of his shrinking chest. He is clearly losing weight. He has lost 10% of his body weight in ~10 months. The weight loss is a cause of concern as less than one-third of patients survive a year after 10% weight loss in a 12 month period.
Then one afternoon a couple of weeks ago, as I take him for his walk after 7pm (the heat is less oppressive then) he tells me that he has cancer. Cancer!
Anna: Sangeeta, the doctor came today.
Me: Really Anna? I thought the physiotherapist was not scheduled to come today.
Anna: Not that doctor. The other one.
There is no other doctor who visits him at home, so I know that he has been dreaming or hallucinating.
Me (playing along): OK. And what did he say?
Anna: I have cancer.
Me: What???
I am angry at the imaginary doctor for telling my father he has cancer! Couldn't they have talked with me before telling Anna?
Me (taking a deep breath): Anna, why does he say you have cancer?
Anna: There is a growth.
Me (unable to keep the disbelief from showing): Really?
Anna: Yes. There is one at the top of my alimentary canal and one at the bottom.
I have no clue how to respond, so I don't. We walk a little distance in silence.
Me: Anna, do you remember that we went to the doctor a few weeks ago? At Neptune Hospital? For an enema?
Anna: Yes.
Me: Anna, we have never had a doctor come visit you at home. We always take you to the hospital.
Anna just absorbs this. We walk a distance in silence till he gets tired and sits in his wheelchair. We wheel him around the neighbourhood.
I decide to bring up the cancer again.
Me: Anna, no doctor came to visit you today.
Anna: OK. Pause. Are you sure?
Me (nodding): Yes Anna. I am sure. Very sure.
Long pause.
Anna: It must have been a dream then.
Me (feeling relieved): Yes. It must have been a dream.
Pause.
Me: Anna, isn't having Parkinson's and Dementia enough? Why do you want to add cancer to the mix?
Anna (lets out a gurgle-giggle): I suppose so.
Me (driving home my point): Anna, if you had cancer we would have to start treatment. Chemotherapy or radiation. Remember how terrible chemo was for Amma? And she had 32 sessions of it!!
Anna (nodding): Yes, she had so much chemotherapy. Your mother was a brave woman.
Pause.
Anna: I would refuse treatment if I had cancer.
Me: Anna, that would be painful. Very painful. Why would you want to live in pain?
Long pause.
Anna: Because, then I would die soon.
I have nothing more to say. He has had the last word.
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| Photo Courtesy : http://narayanahealth.blogspot.in/ |
In the last stages of the disease, over 40% of patients die due to respiratory infections, mainly pneumonia. The other major cause of death is as a result of being unable to swallow (patients are often artificially fed through a PEG tube).
 |
| 11 May 2016 - Anna having lunch |
I am used to Anna telling me that his throat is seizing-up, or that his voice is changing indicating that he is at the end-of-life stage. I don't pay these comments too much attention as he is eating OK and I can understand what he is saying 95% of the time (no pronounced slurring).
A month ago he tells me that he has a growth in this chest and asks me to feel it. I do. There is a hard hump that I believe is his rib protruding out of his shrinking chest. He is clearly losing weight. He has lost 10% of his body weight in ~10 months. The weight loss is a cause of concern as less than one-third of patients survive a year after 10% weight loss in a 12 month period.
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| Walking the Wheelchair October, 2015 |
Anna: Sangeeta, the doctor came today.
Me: Really Anna? I thought the physiotherapist was not scheduled to come today.
Anna: Not that doctor. The other one.
There is no other doctor who visits him at home, so I know that he has been dreaming or hallucinating.
Me (playing along): OK. And what did he say?
Anna: I have cancer.
Me: What???
I am angry at the imaginary doctor for telling my father he has cancer! Couldn't they have talked with me before telling Anna?
Me (taking a deep breath): Anna, why does he say you have cancer?
Anna: There is a growth.
Me (unable to keep the disbelief from showing): Really?
Anna: Yes. There is one at the top of my alimentary canal and one at the bottom.
I have no clue how to respond, so I don't. We walk a little distance in silence.
Me: Anna, do you remember that we went to the doctor a few weeks ago? At Neptune Hospital? For an enema?
Anna: Yes.
Me: Anna, we have never had a doctor come visit you at home. We always take you to the hospital.
Anna just absorbs this. We walk a distance in silence till he gets tired and sits in his wheelchair. We wheel him around the neighbourhood.
I decide to bring up the cancer again.
Me: Anna, no doctor came to visit you today.
Anna: OK. Pause. Are you sure?
Me (nodding): Yes Anna. I am sure. Very sure.
Long pause.
Anna: It must have been a dream then.
Me (feeling relieved): Yes. It must have been a dream.
Pause.
Me: Anna, isn't having Parkinson's and Dementia enough? Why do you want to add cancer to the mix?
Anna (lets out a gurgle-giggle): I suppose so.
Me (driving home my point): Anna, if you had cancer we would have to start treatment. Chemotherapy or radiation. Remember how terrible chemo was for Amma? And she had 32 sessions of it!!
Anna (nodding): Yes, she had so much chemotherapy. Your mother was a brave woman.
Pause.
Anna: I would refuse treatment if I had cancer.
Me: Anna, that would be painful. Very painful. Why would you want to live in pain?
Long pause.
Anna: Because, then I would die soon.
I have nothing more to say. He has had the last word.
My mother, Amma, was a ~19 year cancer survivor.
She survived stomach / gastric lymphosarcoma.
Amma passed away in 2011 of multiple organ failure brought on by septicemia after an emergency pacemaker insertion.
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