The Plan

So now you have read everything out there and feel pretty confident that you understand what you are facing and have begun to think about how you are going to handle it. Now the hard part is coming. You have to create a plan of care for your loved one. These are those big decisions that normally you could put off a bit until you get used to your new normal. Unfortunately, these decisions need to be made so you can create your new normal. Start small and build. This plan can evolve and change over time, but the skeleton if you will, remains intact. The plan should include:

1. Legal documents that must be completed (living will, advanced directives, will, power of attorney, trusts, Medicaid etc). For this one you really need a good lawyer. An Elder Law Attorney worked for me, as we had no money to deal with thanks to World Comm, Enron, Lucent Technologies and the boys at MCI Cap.
2. Decide how to tell friends and family. This is a quiet conversation between you and your loved one. Good food, quiet music and loving words help.
3. Evaluate your home. As the illness progresses will there need to be renovations to your home? Would it be best to move somewhere else?
4. If you or your loved one is working, how long will you want to work?
5. Grieve.

I know the last one sounds funny, but to me it is the most important. If the illness is not going to be cured, you especially have to get a handle on your grief. I found it was much easier for me if I embraced the disease, said goodbye and made a conscious decision that I was going to sleep, eat and walk this disease for as long as my loved one was with me. When I got my heart and head around that concept, the pain lessened. And when the pain lessened I was able to breathe normally again.

That act of working through your grief allows you to embrace your loved one. In my case, my Dad has Alzheimer’s. I know he will no longer be able to interact with me at some point in the future, until I came to terms with that reality I was in agony, focusing on my Daddy is dying. That kind of pain is paralyzing and does not help anyone. There is no contest that provides a prize to the one with the most pain. (Actually, there is but it is called a nervous breakdown and the prize is a handful of pills.) Once I stopped focusing on his death I was able to focus on his life and the quality of life that still existed.