Episode 3: Moving On
Season 1: Surviving Alzheimer’s
This is an ongoing series chronicling our experience with Alzheimer’s — previous “episodes” are available to read in chronological order.
Week 12: I am determined to continue trying to figure out how to make the best of our situation. D does not talk about what she wants to do from this point on. I am left feeling like I need to be in charge of thinking and planning for her.
I now refer to myself as her Tour Guide, but I am guiding us through a dense forest without a map, a place we’ve never been, searching for a blaze stripe on a tree, hoping I can keep us on the trail. If I get lost, we’re screwed.
A lot of well-intended people have been giving me the same advice — “You need to take care of yourself too.” I am an avid believer in the concept of self-care, which has always been easier said than done when raising a family, managing a home, and working too much. I want to say “Don’t you think I know that?” But I don’t, because that would be rude and grumpy and that’s not me. And I know they all mean well, and it must be so hard to think of something helpful to say in a situation like ours. I plan to care for D, and for us. I’m content with however some of that trickles down for me. What is good for D will be good for me. Tomorrow, I plan for us to go for a walk on the beach.
D is on short-term disability, but I can’t imagine her going back to work for the cancer centers she used to manage, even in some limited capacity — it’s just not that type of job. I don’t know if I’ll ever reconcile the harsh rigid lack of empathy from, of all things, a hospital system — an entity built for caring and healing.
I do know that relieving her of the stress of not having to do that job and work for her manager ever again has relieved her of a great burden. I can only imagine what it must have been like for her to go from excelling her entire working life, to struggle with keeping organized, communicating effectively (including advocating for herself) and missing meetings; and being treated like she’s slacking off.
It is hard to imagine, even now, that she had gone back to school and graduated with her master’s in healthcare administration just one year prior to her diagnosis.
Flashback — 2 months prior to diagnosis: D had come home from work crying, overwhelmed after meeting with her manager and human resources, saying, “I can’t take it anymore, I want to quit.” After consecutive years of stellar performance reviews and accolades from the physicians she worked with, she was put on probation for her job performance. Her manager had sent her to occupational health to “see if something is wrong.” She was cleared. I could see that she was struggling, but I thought it was mostly stress induced. Anyone who worked with her over the years knew she had an unbelievable work ethic. Framing her probation as “lack of effort” was completely unreasonable, and cruel.
Her nurse manager’s complete lack of compassion, let alone empathy, was painful. She completely disregarded D’s work history and accomplishments. We were both bitter and angry. But I knew, even then, there was something wrong that we hadn’t figured out and I told her that she had rights and benefits, and she will forfeit those if she quit. I told her that I’d help her address these probation tasks and goals, and we would figure out some other job she can do that won’t be so stressful. But she should leave on her own terms, not be forced out unjustly.
Looking back, this was one of the most critical points in her disease (and she hadn’t even been diagnosed yet) because her short and long-term disability insurance has provided crucial financial security that she would have otherwise forfeited. And as I write this 6 years later, I still struggle with forgiving the nurse manager who tried to coerce her out of her job in such a cold manner. There is no health insurance coverage or any other payment for Alzheimer’s care.
Week 13: I’m opting out of church this morning. I’ve been talking to God quite a bit more lately and I’m pretty comfortable with my sense and expression of gratitude. I disdain attending Mass driven by guilt or symbolic commitment. I’m not mad at God for D being diagnosed with Alzheimer’s at the age of 56. I just don’t need anything to try to make me feel worse in any way than I already do.
We’ll probably go back to church next week, maybe even stop in at some random time to say a few prayers. D remembers her prayers better than remembering how to write a check, and I know it’s so good for both of us on many levels. And I’m certainly not opposed to the possibility of His/Her help. My faith fuels my hope.
One of D’s closest friends wants to take her to visit their other college roommate in Nashville, TN. I think staying connected like this would be good for her, and I trust her best friends explicitly. My most urgent instruction is, “Just don’t lose her in the airport, especially in the bathroom.”
I gave them a blank journal without lines and a box of colored pencils, with the intention that they can write anything about their trip that would be fun for her to look back on, and to use any level of artistry to capture a moment.
Her travel journal turned out to be one of our prized possessions. And no one got lost.
While she’s away, I’m going to look into seeing if we can volunteer at a local cat shelter. D has always loved cats. I am the dog person. Over the years, she learned to love our dogs, and I became the cat person that I never envisioned.
Week 14: Yesterday D wanted to look up all the cognitive testing done for the clinical trial so she could practice (she took a lot of pride in her grades when she was in school). We googled CDR and came up with Cognitive Dementia Rating and she asked, “Why do they use that one, I don’t have dementia, do I?” I reply, “No, you just have Alzheimer’s.”
At that point, I was still struggling with the stigma of dementia and hadn’t accepted how her Alzheimer’s would continue to progress to the point where dementia was as obvious as rain from the sky.
