Every care partner knows the end will come someday. Maybe they dread it. Maybe they welcome it. Maybe it depends on the day.
Whatever your feelings, it's likely that you have questions. Like the entire care partner journey, end-of-life is full of difficult decisions. There is no manual that helps you make the right one, and what is right for your loved one might not be right in all cases.
For the next several weeks, we are going to be looking at various aspects of this final stage of the journey, and try to address some of the issues. If you have any questions you want to be addressed, put them in the comments below and I will do my best.
Let's look at end-of-life, palliative care and what they mean.
These terms are confusing because many assume they mean the same thing, and use them interchangeably. Palliative care is given to people with serious illnesses from which they aren't going to recover. It focuses on their symptoms and providing comfort. The goal of palliative care is to help people in this state to have a good quality of life and feel better.
Everyone in my neighbourhood and on our floor is palliative. They have late-stage Parkinson's disease, heart disease, dementia and many other serious illnesses from which they won't recover. However, they enjoy excellent dining, love to listen to music, plant gardens and play games. They cheer their favorite teams on TV and discuss the royal family endlessly. They tell stories of their lives and care about each other. They live their lives, in spite of the ticking clocks inside of them.
Every effort is made to make their lives comfortable. They are helped to keep clean and fresh and get regular podiatry, dental work, and other services. They get their hair permed and styled and buy new clothes. They are comfortable, but more than that, inspired and have a purpose.
End-of-life is the time when a person who is palliative is coming close to the end. There are many signs. During this time, the person and their families need physical, emotional, spiritual and social support. There are decisions to make, and you may need help to make them.
What does end-of-life look like? We all hope to die in our sleep, but that isn't often the case. Like in life, death is different for everyone. But here are some common factors.
- The person's appetite fails slowly. Perhaps they only take a few sips or spoonfuls. They may lose the ability to swallow.
- Energy fails, and they sleep more and more until they are seldom awake.
- If they are still able to talk, they chose not to most of the time.
- Their bowels and bladder are less active.
- They may indicate that they are in pain through groans or facial expression.
- Their breathing can become raspy and rattly.
As death draws close:
- they get bluish, mottled skin on their toe and nail beds, and sometimes knees.
- Their body temperature drops.
- The rattled breathing becomes more pronounced, and they may slip into a coma.
Although it can be frightening, it is also a great privilege to be with a loved one when they are dying. Hearing is the last sense to go, and you have an opportunity to tell them you love them, and how much their life has impacted yours. Take this opportunity to say everything you need to say.
It may bless them in their final hours, and it will certainly bless you.
Next week: When Food is No Longer Possible
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