We have spoken briefly here and there, now and then as we pass in the halls of church, but never actually had more of a conversation than polite greetings and comments on her amazing clothes; she is a fashion show for the arts! Her 'look' is sophisticated, a walking poster for local artists. It's always a treat to check out her jacket or jewelry or scarf.
Russ has been diagnosed with Parkinson’s for 6 years. As the years and days have slipped by, I have spiraled in and out of hope and despair and I wonder how to embrace his ever changing being. I wonder at this new found man that only seems to stay 'found' for months before a new guy appears. I honestly don't know if he notices the finer points of newness, but he does comment on the bigger losses. Obviously he is aware that he no longer walks without assistance, he does not drive, conversation is tough and I am the master of his ship...so to speak.
As Parkinson's is a degenerative disease we have no idea where the journey will take us. I have been grappling with that lately. I have felt a wounded heart as I worried about being the right kind of wife to care for this special man as things become more difficult for him, requiring us to adapt and adapt and adapt. After 41 years of marriage I want to remain the main person in his life. In order to do that I also have to watch 'him' disappear. I am rather zealous about both his safety and the safety of others. This is our life and I don't want our lack of preparedness to be the cause of injury for Russ or for others. Being proactive in our care is the best way to that end.
Russ has a Parkinson's specific exercise class on Fridays. I have taken him to class for over a year, going to class with him to be his support, literally. The class is generally around 15 participants, mostly men. As I have been working with many of these folks in my swim class as well as going to this class, I see each of them 'disappearing' as the disease takes hold; subtle changes that add up to less and less stability. Russ has a wheel chair, 3 have canes, 4 don't drive and most of the rest of them shouldn't drive. Probably half of the class experience visible mild to severe tremors, many have a very difficult time getting down and then back up from the floor, several have memory issues. Many struggle with incontinence. They take a bouquet of drugs, have botox injections, DBS implants in their brain and utilize a huge variety of non-traditional alternatives, all to hold this ugly monster of PD at bay.
I was 'fired' from coming to class a couple of weeks ago. It was a 1 minute, end of class admonishment by the instructor to do something for me. I was given 2 weeks to get used to the idea, but then 'please don't come with Russ'. I went into a tailspin. I know I can be a tad zealous in my care for him, but seriously? When my heart watches my best friend change from outgoing, independent, self-sufficient and adventurous to needing so much of my time and energy it is just what I do, and as they say, it is what it is! I was well aware that I was the only caregiver at that class. I was aware that I was a visible presence no one else had. But 2 instructors with 15 falling apart people seemed tough and I erroneously thought that by my being there, one of their less able students balance wise, would not need their attention. Have those instructors every sat with someone they love who fell and was getting stitches for the 4th time on the same eye? Have they watched as they were being taken by ambulance after falling and dislocating a shoulder in boxing class? Have they witnessed tears of frustration? Have they gotten a call from the Life Alert people saying your husband fell. Have they watched as one of their students took a good 4 minutes or more to transition from the driver's seat to standing beside their car in preparation to heading into class? I am certain, because of their work, they understand frailty. But given their youth, do they understand aging. Do they understand 41 years of commitment? Do they understand 'until death do us part'?
Back to my artistic friend. After being 'fired', I needed a voice of reason and understanding. Russ' instructor needed to maintain control of her class, which I respect, but it disappointed me that I may have challenged her authority I am sure another hope for her was that by my not being there, it would encourage Russ to work harder since his protective wife was not impeding his motivation. I do get that. But a piece me needed to maintain control of my heart and it had been stepped on. (Yes, I know that sounds harsh, but I too am changing amidst all this caregiving. I don't have the emotional stability I once did. I don't have the time and luxury to ponder. I don't have the intense desire to 'be nice', but go for 'real' now) So I called my friend and said "I need you. I need to hear how you lived with an ever changing husband. I need to know how you were transformed as a person and a couple. I need to know how the judging eyes of others impacted your life. I need to know how you survived."
Thank you dear lady for your compassion. Sitting across from you gifted me with love and care. It gifted me with determination to love my husband in the best way I know how and to the best of my ability. As the old cliche says, no one knows what goes on behind closed doors. People see our public struggles. You allowed me the grace to be me. You listen and encouraged. Tears, laughter and hugs go a very long way and I appreciate you. Again, thank you dear, sweet, kind and wonderful woman.