FROM OUR FAMILIES( continued)
I think all of us here at this conference have probably gone through three periods that Ann and I have experienced: 1. First, there is this vague sense that something is not right, but we have no idea what. 2. Next, something, or a series of things, happens that causes you to seek medical help. For us, this came after Ann fell backwards down the stairs for a second time. But, for a certain period( in our case, almost two years!), there was no good medical explanation for what was going on.
3. Finally, we have the right diagnosis, and we can get our priorities in order about how to manage the situation.
For Ann and me, getting confirmation that it was PSP has been crucial. It finally put us on a path to managing our lives and to maintaining some level of sanity. I feel for the thousands of people who must be out there— those who struggle with a person who falls, continually, for unexplained reasons, suffering injuries, stress, worries, and feeling lost.
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Before I go any further, I want to salute everyone connected with the disease: 1. Patients who are here today: I admire your courage to face up to what the disease is like and what it has in store for you. I respect your struggle. I cannot imagine what it is like to have a disease that progressively gets worse and for which there is no cure.
2. Caregivers: We are going through an extraordinary experience, witnessing and managing a life that, step-by-step, needs different levels of support and, to be honest, a life that is being destroyed by the disease. If you are like me, you are very tired. It is a very draining experience indeed.
3. Professionals: I salute your efforts and your guts to deal with the quantity and quality of suffering that you see every day. Of course, we hope that you will find the causes and a cure, or at least a way to soften the impact of the disease.
But the reality today is that patients and caregivers are dealing with a degenerative, incurable condition that we have to manage in some way. Faced with this knowledge, I have simultaneously come to two conclusions: 1. I have to accept that this is the case: The disease is incurable and, ultimately, terminal. 2. I can and must do everything in my power to make this process as positive as possible.
One wonders,“ Where does this positive stuff come from?” I’ m not really sure. It just goes with my personality, I guess. I gain a lot of inspiration from other people with positive outlooks. If you ever want to find inspiration, I suggest you Google“ Dalai Lama quotes.” It is amazing how many of his sayings apply to caregivers. My favorite quote, and I am paraphrasing here, goes something like this:“ Human suffering is everywhere, but being happy or unhappy is still a personal choice.”
Over time, I have learned to express this drive for the positive in a number of ways. 1. Do whatever I can to keep Ann as well as possible, for as long as possible. 2. Keep our lives as normal as possible. 3. Give Ann control over things she can control. 4. Blame the disease when things happen. 5. Learn to accept help. 6. Look for easier, safer solutions to problems and mishaps. 7. Keep people in the loop. 8. Slow down. 9. Make sure to take care of myself— and our caretaker helpers as well.