Forgetting our past is terrifying. Our experiences, our memories are who we are, how we identify ourselves. Part of the progressive supranuclear palsy from which Jack suffers is dementia. But, not the loss of memory associated with Alzheimer’s disease. No, this central brain disorder messes with the executive functions of the brain. Planning and problem solving is affected. There are some memory lapses, yes, but a larger issue is increasing problems with speech. Financial judgement becomes impaired.
If you’ve read My Life with a Wounded Warrior that last one should have made you either laugh out loud, or scratch your head and ask, “How will they tell the difference?”
In fact, many of these executive function issues can also be present with Post-traumatic Stress. So, yeah, how DO we tell the difference?
And that right there is the rub.
What I want to talk to you about in this post is not Jack’s loss of memories, but my own inability to accurately remember his and my shared past. The increasing tendency for the reality of sick Jack to overshadow in my mind the younger healthier Jack.
And it IS tricky.
This is the man who, long before he has PSP, hooked two 150 pound dogs to leashes and immigrated to the country of Panama. He’s filed bankruptcy twice, run off a whole string of good women, and has a dozen stories of bar fights which end with his go-to move of popping out his opponents eyeball.
Executive function? Problem solving? Are you shitting me?
When his day care calls and tells me he has been inappropriate with a female caregiver, and explains they are aware of his disorder and his current inability to judge sexual appropriateness, do I laugh and tell them that, no, he’s ALWAYS been inappropriate with women, or do I smile and thank them for their understanding. When he asks if we can have a barbecue at the house and then prints up flyers and invites seventy people, is that simply more of the same bad judgement he’s shown for the entire twenty-five years I’ve been with him, or is this a new symptom of his PSP? When I tell them I am exhausted and need the weekend to recuperate and he gets on his phone and invites people over for dinner – “Pam will make homemade pizza, you’ll love it” – is this the same old Jack or is this new behavior?
In the old days when he did something like this, I’d glare at him and say, “Great. What are you going to be cooking for everyone, because I told you I needed to rest.” Now days if I tried this he’d likely get on the phone and all hell would break loose. I’d have a backhoe in my yard digging a pit to put a pig in the ground, carpenters arriving to build a shade pavilion, and a hundred neighbors RSVPing. Come to think of it, that’s, more or less, what happened in the past, too.
In truth, of course, what’s happening is that Jack’s symptoms of post-traumatic stress are being exacerbated by and joined with the symptoms of progressive supranuclear palsy. And this marriage of symptoms is somehow making it difficult for me to remember the good times Jack and I have had over the years.
Let me give you an example.
We lived for about five years on the beach in a little trailer park on the Mexican Caribbean, about twenty miles south of Playa Del Carman. It was a wonderful lifestyle filled with incredible scuba diving and many good memories. But, during that time Jack chased a lot of women. My reaction to his philandering was a great deal of hurt. I felt disrespected and betrayed. Lately I have to work hard to remember the good times he and I had in that little community. Each time he puts his needs over mine – like inviting people to the house when I’ve told him I am exhausted and want to rest – that disrespect triggers memories of all the other times in our relationship that I felt disrespected, my needs ignored in pursuit of his desires.
I have, in fact, put up with some crap from Jack over the years. I did it because I loved him, yes, but also because in counterbalance to the crap, he was intelligent, funny, charismatic, and adventuresome. Now days the qualities which used to offset the chronic disrespect, inappropriateness and yes, downright selfishness, has been erased by the PSP. And, just as bad, the progressive destruction of the executive function of his central brain triggers in me twenty-five years of memories of his bad judgement due to PTSD.
And yet, despite all of this, Jack is still my hero. He is still the most courageous person I know. My love for him is, deeper, more accepting, more precious than it has ever been. I cannot explain to you how that is possible.
It may well be that I am the stupidest woman on the face of the earth. Certainly there are moments when I feel that I am just that. Jack used to say that love is nothing more than a locking match of neurosis between two people. Maybe he’s right. A few months ago I asked him, if things were reversed, if I were the one with PSP and he were the caregiver, where would we be? He thought about that long enough that I thought he wasn’t going to answer. Then he told me, “Well. I’d be in Thailand living with a couple of beautiful young women and you’d be in the best nursing home I could afford.”
I didn’t know how to respond to that. Still don’t.
Except that caring for Jack through this PSP is somehow a completion of our adventure. It is about my love for him, yes, but it is also about the person I choose to be.
There may come a time when I can no longer keep him home, when he needs care 24/7 and a nursing home is our best option. But until that time, before I get out of bed each morning, and the last thing each night I call up a good memory he and I have shared. The scuba dive on which we watched the mating dance of two trigger fish and then Jack imitated the amorous male fish underwater, shaking his shoulders, sliding past me, removing his mouthpiece, and nipping me gently on the shoulder. The times one of my sons was in trouble and, without hesitation Jack loaded the car and we drove hundreds, in one case thousands of miles, to help them out. The times he bought toys or ice cream or boxes of food for children we met on our travels.
I call up the good times. I do my best to safeguard the memories of this twenty-five year adventure. I don’t know what else to do.