From lupus to dementia: the art of healing and acceptance

No, this isn’t really about COVID. Although, having a loved one acquire breakthrough COVID, after already having it once, does have me wondering more about disease predisposition. In all the controversies of today, some believe positivity keeps all evils away: even COVID-19. What I know, is that it doesn’t. For after all, whether a disease like cancer or an infection like COVID-19, I suspect we have all had someone we love – someone who is positive above all else – in the end, lose their life to what they have so positively and bravely faced. While positive, they accept the point when it is out of their hands. And while positivity and joy and laughter all play big parts in healing, on its own, being positive isn’t the end of the story. Unfortunately. I so wish it was.

For a decade, I’ve wondered about the connection between vascular dementia, which our mom was diagnosed with and essentially died from, and her earlier bout with systemic lupus. Mom began to notice slight memory challenges, commonly referred to as minor cognitive impairment, almost a decade before her death, a few weeks shy of her 88th birthday. Her memory changes those first five or more years, though, were subtle. In the beginning only she knew that she had to rely more on lists, for example. Before long I noticed her attempts to hide it from me, and then she began apologizing. Thinking appointments were on the wrong day or repeating herself were what was first noticeable back then. Due to her increased vision loss with macular degeneration, some of her dementia symptoms seemed more significant than they would have if she had better vision. For example, if you can’t clearly see a face at 10 or 15 feet, then you need to be reminded who someone is as they near you. I remember looking for scientific literature identifying an association between lupus and vascular dementia. It seemed reasonable to ask, especially, as none of Mom’s five sisters – including two older still living today – suffered any problems with dementia at the time. And for those of us who are fixers, sometimes our search for answers becomes exhausting, and yes, problematic.

Shortly after our youngest daughter, now 27, was born, Mom became exhausted, and gave up her adjunct faculty appointment doing which she loved most in her long career: teaching at Marylhurst College. She was 61, a year older than I am now. Mom was a favorite, engaged instructor. I remember her telling me that she had a tough time establishing boundaries with students, some who wanted so much more from her as confidante and friend, than she had energy to give. Following a process of elimination, less known back then, Patty was diagnosed with chronic fatigue syndrome and fibromyalgia, both autoimmune conditions. She was frustrated – hadn’t she lived the picture of health? Healthy eating, exercise, meditation, social connections? She gave up her teaching post, spent time and energy on her health and improved. Flash forward almost ten years to 2004, and Mom’s health crashed. I remember it all so clearly now, as I became somewhat of a caregiver briefly for Mom for my first time. Mom wrote about it, and what she learned from her health experiences, now documented in her 300 page memoir that sits with me. I will never forget the delirium she experienced, temporarily bedridden, as we – especially me, the daughter- attempted to care for her isolated out on the Long Beach Peninsula while on our family annual reunion. She looked older all of a sudden, and I had a vision of an old woman dying. Something I didn’t know at the time, but that I would experience 18 years later.

Mom was fortunate, once we returned home, to have a kind and inquisitive internist who identified a brilliant rheumatologist, soon after diagnosing systemic lupus. Mom’s gardening frenzy in the sunshine likely triggered the flare, we suspected. She was put on prednisone, a steroid that nobody I know has ever enjoyed taking, because of its adverse effects. Within the year, a death of an older sister and a favorite brother-in-law added to the sadness and probably more despair than I knew at the time, that Mom experienced. Time spent with my young daughters, and Patty’s other adored grandchildren, shielded me from some of her personal pain. And yet, against so many odds, with time she healed. Within a year she was on a planning committee for her 50th Oregon State University reunion, where she, in fact volunteered to be the speaker. (I have preserved Mom’s speech which sheds an interesting light of how she felt about her generation of women. Read it here. And yes, stories continue forever.)

What’s amazing in all of this, is that as Mom healed from and experienced remission from lupus, something that medical journals cite happens less than 15% of the time after 3 years, and only 4% for more than ten years, she never again had a flare. To begin with, mom was older than most of those with lupus, with the average age of the 90% of cases who are women to be between 15-44 years for first onset. (Patty was 61 when diagnosed with chronic fatigue, and 71 when diagnosed with lupus). She lived seventeen years after the lupus diagnosis, much of it still traveling, hiking, being the amazing wife, mother and grandmother that she was.

As Mom began to experience increased loss of memory and impacts from vascular dementia, in her final years, I reminded her of her amazing healing journey. Yes, I understood her being sad: but might she also be grateful that she was one of the few to go on to be full of health after lupus. She agreed, this woman who honored intelligence above all else. I suspect, had times been different, her early bouts of chronic fatigue might have been identified to have been an earliest lupus flare. Not that it matters now. Last week I looked at the science about associations between systemic lupus and vascular dementia, finding it even more supported. In fact, just a week after Patty died, a new study was published finding significant association between systemic lupus and dementia, with risk for some up to 15 times higher in developing vascular dementia. Given the inflammation experienced during lupus, it isn’t that surprising, I suppose. Not that it really matters now.

What does all this mean? Well, yes, positivity matters. But it doesn’t keep all illness away – whether that be an illness of the mind or body. Genetics, previous experiences and conditions, and things we don’t even understand, play parts we don’t yet or may never fully understand. And at some point, I suspect, we accept and try to find grace. And those of us watching loved ones facing personal health challenges, do what we do: we love them, honor them, assist when we can, and be grateful we have the good fortune to have them in our lives.

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