Sunday, April 19, 2009

End-of-Life Care

As end-of-life approaches, there are many concerns. Fortunately, in a big city, there are palliative health care teams who are there to assist care recipients and caregivers. Most of these people are attached to a hospital or an Intensive Care Unit (ICU) and are few and far between in rural areas. The Ontario government provides lists of family health care providers, but you want to find a specialist in end-of-life care.

Your best source of information is such a professional. Our non-profit 211Ontario.com site is a good step, but resources such as Altzeimer's Society, non-profit hospices (or look in your phone book!) and the Cancer Society provide much support. The Canadian Virtual Hospice has a huge site, with much information for caregivers. See also: World Health Organization’s Definition of Palliative Care

This is what to expect for someone with cancer: eating changes, less energy, unresponsiveness, breathing and swallowing (dysphagia) issues.

My father had a brain tumour. As with dementia, the effect on the brain is a diminishing of particular capacities.

The effect of a tumor and swelling on the whole brain affects the general functioning of the brain. As the cancer progresses it may produce these symptoms:

  • increased sleep patterns
  • mobility issues
  • trouble speaking or understanding conversation
  • loss of memory
  • lack of ability to form new memories
  • impaired judgment
  • weakness, which may affect only one side of the body
  • seizures
  • headaches
  • extreme mood changes.
All of these things should be monitored. In my father's case, in LTC, they were not. The doctor seldom saw him and we were frustrated with getting care.

Signs of dysphagia

• Coughing when eating or drinking
• Food or liquid spilling from the lips when eating or drinking
• Trouble moving food or liquid around in the mouth
• Prolonged chewing
• Trouble starting to swallow once food or liquid is in the mouth
• Clearing throat shortly after a meal
• Has a wet or gurgly sounding voice
• Complains of feeling that something is “stuck” after swallowing
• Shortness of breath during or right after mealtime
• Has frequent heartburn or bitter taste in the mouth
• Unexplained weight loss
• Recurrent chest infections
• Refusal to eat or reluctance to have food in the mouth
• Pocketing food or liquid in the cheeks or holding food in mouth

I had no idea that this was a common problem. It is too bad this information is not generally available. It would have explained my father’s behaviour and assuaged my fears. I fed him every day.

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