Hello Friends!
Recently a caregiver told me that she has always been a planner. She likes to try to anticipate the future and try to have access to the tools she may need should that future actually materialize. A friend who observed this process once told her "Caregiving is not a project." She disagreed and so do I.
I just looked up "project" in the dictionary. There are quite a few more definitions than I expected. The first two in the noun category are 1) something that is contemplated, devised, or planned; plan; scheme and 2) a large or major undertaking, especially one involving money, personnel, and equipment.
Interesting. To me it would seem that you could have a large, expensive and labor intensive project without planning at all. Many times this is what happens with caregiving. You don't believe that one day you will be responsible for the wellbeing of a person you love who is not your child. Even those that have an inkling that this might possibly occur frequently don't have a concrete plan. Too often planning begins when the crisis happens. When there is a crisis and there is no plan there is often chaos. However, when there is a plan there is a possibility of avoiding a crisis.
Sometimes planning is one sided. Even after my Mom was told her cancer was terminal and that she had very little time left, I could not persuade her to talk about it. In the end, I used the information I had collected throughout our life together to make the best guess at what her wishes would be. A better alternative would have been to have a discussion where we contemplated and devised a plan together. There are a variety of tools out there like "The Conversation Project" which provide tools for having a talk about end of life planning. If you are in a position to use these then I highly recommend doing so.
After working with caregivers for so many years and having been one myself, I would have to say that more often than not the planning falls to the caregiver. Don't get me wrong. You cannot plan for all of the inevitabilities but you can certainly look at the big picture. Who will likely be the decision maker? Are all the documents in place to assure the decision maker can actually make decisions? Where will care likely occur? How will care be paid for? Have you seen an attorney about asset management? Do you have long term care insurance and what does it cover? Is the person being cared for eligible for any special services like those provided by the VA? Has the paperwork been completed to access these services? Is the whole family on board and in agreement about the answers to the above?
Are we seeing the project emerge? And then, when you think you have it all figured out something happens to change the plan. The same caregiver who mentioned the project to me told me that her husband is now in hospice. The project is almost completed. But is it? Did she include herself in the project? Will she be emotionally and physically healthy enough to carry on? Or will she become someone else's project?
My wish for caregivers is that when possible they make a plan. Whenever possible they should include others in the plan. But they should always make their own wellbeing a "project" in its own right . Devise a plan to take care of yourself. Create opportunities to be healthy and happy. Take the all important break once in a while. After all, life is a major undertaking. And as a gift to the one whose project you may one day be, include them in the plan!
With Gratitude,
Mary Ellen
