entangled

Janis is still showing gains she made in palliative care last Fall. However, it appears that she has plateaued at a level where she was at a couple years ago. And, like everything about this disease, it is welcome and frustrating. Welcome because it creates hope (in spite of the realities), and a degree of gratefulness (to again, have some limited capacity to interact, communicate, to share each other during visits). Yesterday, Cathi and Sonia showed up with our cousin, Priscilla. Priscilla is now 80 years old and looks about 60-ish. (One can only hope that these genes are shared generously). Janis from her wheelchair, smiled and chuckled with recognition and excitement. She still lacks speech, other than an occasional remark which may or may not reflect context. Still, when she smiles and laughs, these are positives that indicate a quality of life.

Today was my second visit since returning from a trip with my grandson, Rob, to Virginia, to stay with Stacia and Tim for a few days. We visited D.C. and hit all the tourist sites. When we returned to Maine, Wednesday, we flew into Portland early (10:30 am). I retrieved my car from Maya’s house in Harpswell, and drove to Lewiston to visit Janis. When I arrived in her room, I stood at the foot of her bed (nap time after lunch), and when she looked up I threw my arms up and wide to display my excitement to see her. Big smiles to light up the room! We hugged and cuddled on her bed briefly while I spoke into her left ear, how much I’d missed her. Every time I pulled back to see if she had heard me, she gave a big smile and nodded. The visit went late, but as she tired I decided to leave. I told her I would be back. And, as usual, just in case she had any doubt, and to be certain that she understood, I kiss her and assure her I’ll be back. This is one of the benefits/gains that comes with her release from palliative care.

The remarkable bounce Janis got in palliative care that allowed her to recover from a hard-core decline, included, among other things, hospice care requesting that she come off all the medication, excepting two, one for pain, the other an antidepressant. Janis had been on a long-term (years) cocktail of medications, and acquired more after her placement. It was a consensus that a major, and likely, recovery from going into palliative care, was the dropping of those medications. So, I mention this that others with folks in care be aware of the side effects of long term, multiple medications and the impact that can have on patients–Janis was dying.

There are still days that are emotionally difficult, but to a lesser degree than a while ago. For four years I stubbornly avoided medication. But one day last October, I found myself incapable of denying that I was depressed. I stopped in the middle of a bout of grief one night, and took inventory of myself: my kids, and friends had expressed concern; I had lost much weight; I couldn’t sleep; no appetite, and, amid a series of poor decisions and struggling to keep bills paid (I did manage to not fall behind, but it took much longer, to double and triple my proofing before allowing myself to do each electronic payment), I recognized that I was exhausted. In all my life I have never felt such depth of dismay. Awash in guilt, regret, anger, and authentic confusion, by that I mean, almost every decision I made I had to review it a number of times before acting on my thinking (this could take a few seconds, or a day of considerable doubt). I no longer trusted myself. I tried not to display this (and this takes energy and effort!). As I ruminated almost continuously, my loss of Janis and the remainder of our time together in our retirement, I also became hypersensitive to her plight. Years. A lifetime of depression and the trauma of a childhood now lost to her, and not recoverable.

Depression. Now, I confess, I thought I knew what depression is…but, if you have not experienced it, I don’t believe it is likely that it can be truly understood how debilitating it is. My appreciation for what Janis suffered, is more heightened after this experience. I did end up on an antidepressant and within days, almost immediately felt relief. No side effects and a fresh, clear mind to get me through each day. I still have to deal with the same grief, but the experience is normalized and no longer a raging in my brain to fight for the focus to get things done.

When I visit Janis now, I am able to be 100% available to her in every way, for the entire time. And I can now focus on Entangled, which has been held hostage for nearly five years.