We all look forward to life event that bring us joy like the birth of child a child, getting married, retirement, etc. We even plan for the no so good events that bring us sadness, like death of loved one or an accident of some sort. Very few discuss who or how would they be cared for in the event that they can not care for themselves. With advances in medical technology and science, the chances of surviving a traumatic event is highly possible. So just as we plan for possible death, it is wise to plan and discuss what you wish if you were disabled in some way. I love talking about this not because of my healthcare background but because I was blessed by the inadvertent planning on my mother’s part. To this day I have no idea why she purchased a long term disability policy but I am soooo glad she did. That policy helped us financially for many years. But planning for caring doesn’t just involve financial preparation, it involves conversations on quality of life, realistic expectations, capabilities, and more. If you think you should have this type of conversation with someone you care about here are some questions to get the conversation started:
If you were in an accident, what are some of the things that would be acceptable to consent to and why?
You may have to give examples like loss of a limb(s), unable to speak, or paralysis. It is important to ask, why to get an idea on their reasoning behind their answer. One may say that losing one limb is acceptable but paralysis on all limbs is not. They may see a better quality of life with one limb is better than not being about to walk. This will give more of an understanding on their thought process.
What do you think is acceptable quality of life?
If they are not sure what you mean, discuss examples of being able to do nothing for yourself to needing assistance with a few things. Ask them to describe what they feel is important to them in your life. This can range for many people.
How do you feel about caring for others long term, like a grandparent or sibling if they needed it?
This is another question that can range depending on experiences and culture. This question speaks to the perceived capabilities. The time to find that is out is not when the situation occurs but before so that you are aware of each others perceived capabilities. It is possible that feelings can change over time but at least you have a foundation.
If I had to stay home because of an illness, what would you expect my involvement be and why?
This question can really bring up the expectations that may or may not be shared by the other party. This happens all the time - one person is expected to step up and they don’t so now the support person or caregiver is some who had no choice. In the AARP/NAC 2015 report, almost 50% of the people surveyed stated they did not have a choice. It is also important to ask “why” because the person will be able to understand the meaning behind the answers.
These types of questions can be difficult. However, if you are ever in a situation where you can not speak for yourself, it would be great to have someone who understood not just who you are but what choices you would make. Just keep in mind that with life events and changes, it is important to revisit the questions from time to time. The commission on law and aging suggests that you revisit the discussion during one of the 5 D moments - I added a 6th one that is important.
1. Decade – when you start each new decade of your life.
2. Death – whenever you experience the death of a loved one.
3. Divorce or Marriage – when you experience a divorce or other major family change.
4. Diagnosis – when you are diagnosed with a serious health condition.
5. Decline – when you experience a significant decline or deterioration of an existing health condition, especially when it diminishes your ability to live independently.
6. Delivery of child - perceptions can change when you have a child.
Article written by Belena Butler, MSN Lead Care Specialist at Caring Support & Solutions. Caring Support & Solutions is a Care Managing and Patient Advocacy Company helping others get the care that they need.