In the past few years as Keith and I have butted heads over most PD related issues, I have often grumbled under my breath I'm just along for the ride! I couldn't understand why I was the one who always had to cave, always had to give in to what he wanted. From exercising to eating healthy to moving and everything in between, Keith has always won those tiny little battles. I used to think if Randy Pausch can turn all those decisions over to his wife, why can't Keith? Sadly, Randy Pausch had terminal cancer, Keith does not, but the sentiment is the same - it is my shoulders that all of this is going to fall onto some day, so shouldn't I have final say in what our long-term future plans are? I am not too proud to admit that this is how I have often felt in the past. All that changed this week after reading a PD book that slapped me around and put me in my place.
Keith and I are always reading any and all PD books we can get our hands on. Last week Keith came home from the library with a few older PD books. One of them, Caring for the Parkinson's Patient, really hit home. Chapter Three, Parkinson's Disease and the Family, Karen Boyd Worley and Raye Lynne Dippel, states this:
When an individual suffers from Parkinson's disease, it is not just a personal matter but a reality that affects every member of the family. . . At times, family members rise above the difficulties and demonstrate not only adequate adjustment but also inspiring personal growth. On other occasions, the stress becomes too much and families begin to behave in dysfunctional ways. . . What accounts for the ability of some families to struggle through hard times - to form uniquely workable solutions to their situation - while others seem to become mired in unpleasant, hurtful, or unhealthy interactions?
While Keith and I have many times disagreed on how to manage this disease and what future plans we should put into place, I have always been proud of the way we have adapted our lives, our entire way of life, to suit PD. We have provided our children with security and stability, at the same time leaving room for the flexibility that is often needed just to survive. We work hard "to form uniquely workable solutions" to our own situation. Still, there is always that side of me that secretly thinks I can do better.
Anyone familiar with me at all knows I have a love/hate relationship with Keith's hobbies, namely cars. I love that he has something to do, something he enjoys that keeps him motivated, active and happy. At the same time I hate that this passion steals him away from me and the kids. Now that the house is up for sale and Keith has sold his beloved Camaro, I can't help but hope that we will move into a house without a shop. If I'm really lucky, maybe I can convince him to move several hours away, deep into the Western Highlands of the Allegheny Mountains. Yes, you read that right. I want to take away my husband's hobby and take him away from the only home he's ever known. In doing that I can productively take care of him without any distractions and I will be close to my dear friends who always manage to put a smile on my face no matter how trying PD can be. But then I read this:
As many as half of all parkinsonian patients suffer from depression . . . If the patient's activities are severely restricted, it may necessitate early retirement along with the accompanying financial worries. New activities must be developed to prevent the onset of boredom. The fear experienced when contemplating an unknown future . . . must be faced head on. Caregivers and care receivers have noted that sorrow appears to be triggered by loss of future plans, restricted social life, and inability to travel and participate in hobbies . . . as patients become more isolated and apathetic, environmental stimulation is significantly diminished. This lack of stimulation contributes to the likelihood of depression and decreased intellectual stimulation, which in turn can cause an existing cognitive impairment to appear even more serious than it is.
Simply put, taking away Keith's hobbies and moving him to an unfamiliar environment where he won't have the social interaction he is used to is inviting depression and cognitive impairment. Not exactly what I had in mind. My selfish side wants to have it my way because I am going to be the one taking care of us all at some point. Do I not have the right to do whatever it takes to make it easier on myself when that time comes? Well, no I don't, as I have recently come to realize.
It is true that with PD I am just along for the ride. To keep Keith as healthy as possible and off the slippery slope of depression, dementia and physical decline, I need to encourage as much time spent on his hobbies as possible, and lots of social interactions in familiar surroundings. My efforts to slow down this ride may end up accelerating it instead. So from this day on I will try hard to just sit back and enjoy this ride.
For many of us, PD is a very long, slow roller coaster ride with many ups and downs, even a few loops thrown at us from time to time. For years I have assumed that as the would-be caregiver, I am the one running the controls. Instead of sitting back and revelling in the thrill of the ride, I thought I could sit front and center, in full view of the tracks and where the ride was headed, preparing all of my passengers for what was up ahead. But you know what? I am not in charge. This isn't my roller coaster. Hell, this isn't even my amusement park. I have happily paid the price to get into this park. I patiently waited for my turn on this ride and I got butterflies in my stomach as I approached that first big hill. But I need to remember that Keith is the one in charge. He is the one who built this ride and I am one of the passengers. I am along for the ride, the ride of my life. And oh boy! What a ride!