Not About You

When I was a foster parent, one of the concepts which was repeatedly stressed was that we needed to consider all of our decisions and actions with regards to our foster children in the light of "What is best for the child?"  This sometimes led to us having to do things we didn't want to do.  We didn't want to take any of the children to visit the people who abused them.  We took them for visits because even abused children love their parents and the state was trying to see if reunion was possible.   

When I think about the care that needs to be given to someone at the end of their life, I see the need for a similar approach.  If you make decisions from a position of "what I want," you're likely to make decisions or take actions which are not what the individual would decide for themselves.  

Consider for a moment, a person in the final stages of Alzheimers.  He may not be able to speak or make much eye contact.  She may be struggling with additional diseases such as cancer, diabetes or osteoporosis.  Do you know what the individual would want done in different scenarios?  Do you have a car understanding of what level of intervention the individual would find too much?

The only way to know is to have the discussion early and often.  The conversations don't have to be highly emotional nor do you have to wait until someone has a significant or life changing diagnosis.  I have conversations with Mom and my husband on a pretty frequent basis and I know, for example, that Mom wants no life support or resuscitation measures.  When the time comes that there is an emotionally challenging health situation, I feel I have the knowledge at hand to make decisions for them if they are unable to make the decisions themselves.

When a person is diagnosed with Alzheimer's or other disease which will impact their cognitive abilities, I firmly believe we should write out a plan based upon common stages in the disease's progression.  For example, if the person is still driving, consider an action point that defines when or why the person's car keys and ability to drive should be removed.  Consider at what point you may need to move the person to a nursing home or, as they approach the end of life, what palliative care they would want.  You may find that the person wants less intervention than you personally would want them to receive.

While the person can still give voice to their care preferences, document it and implement it as much as is humanely possible.  Even if it is difficult for you, you're showing them a tremendous amount of love and respect by following their care wishes instead of imposing yours.