Category Archives: mental health

15 CORONA MINUTES WITH JANIS

Where to begin…it’s a crazy world this Earth, but I live here, and if you are reading this well I guess you do also. So I will avoid the temptation to lament current events.

I have not been able to visit Janis since March 8, 2020. We have had some Zoom time, but she was not able to engage much with that. And in case you need a reminder: this is August 5, 2020, Wednesday as I write this.

I visited Janis yesterday.

For a week now I’ve kept an eye on the forecast. D’youville Pavilion (DYP) where Janis is living now has opened for limited, protected visits. D’youville was the first institution in Maine to close its doors early last March. To date not a single case of this virus inside their place! They are strictly protecting their residents and their staff! If you’ve heard this before I apologize, but this place is an amazing, caring, committed facility. I’ve made friends with many staff and I’m known as Bob, Janis’s husband, throughout the building. Janis is a bit of a celebrity having survived palliative care last Fall. I’ve been watching the forecast because the visits were scheduled to be outside in the garden out back of DYP inside their new large gazebo. The day started with a threat of rain. However, it held off.

As I walked into the entrance I was met by staff, passed their interview regarding my health, temperature, and was escorted into the garden. I had observed Janis being wheeled into the gazebo as I was interviewed. It was at a distance, across the lawn, but I knew it was her. A cloudy day but comfortable. Janis and I had taken many strolls, with me pushing her wheelchair, through this beautiful garden. As I approached her I could see her looking around. She saw me but didn’t recognize me. I sat down in front of the plexiglass shield. a full-sized, three-sided construction. Nicely done and clearly professionally constructed. My seat was 6 feet away from the glass. I wore a mask. Janis did not wear one but had one on her lap, but the aide, Jess, who accompanied her did wear one. Janis kept making eye contact but I could see that she was unsure who I was, so I asked if I could lift my mask briefly and I got a nod from Jess, the Recreational Aide. But, Janis had spotted my eyes and started smiling. I pulled down my mask for a few seconds and she started to laugh excitedly. She mumbled a few words to me, the glass and my poor hearing made it difficult. I asked Jess what she had said, (in my haste that morning I forgot to bring my hearing aids). Jess told me, “She said, ‘Nice’. This tickled me and I mimed to her that I loved her: my hand on my chest then tossing it out to her. She smiled. She looked good. Clean and wearing her favorite jersey. The aides on her floor keep her fresh and shining. I value this unit very much. They take good care of her. She knows her staff and displays a lot of affection for them as they do to her. She smiles and pats them when they are caring for her. I’ve watched this for a long time in this unit. Good people.

From this point on, Janis remained alert and comfortable with this visit arrangement. I noticed that she looked around at the plexiglass and then returned to look at me and smiled. I threw kisses at her frequently, there really is not much we can do other than this. She can’t use language much now, and she can’t hear, and she is in poor cognitive condition. But, clearly, she knew who I was, and that was enough for me. I was thrilled. And, this all led to some tears. I struggled to manage this, I didn’t want her to hurt. But, she could see it in my eyes and she watched me closely. We maintained quiet eye contact for a minute or two. It was a warm sadness, but also loving.

Our 15 minutes was running out. She couldn’t know that, but I had been carefully watching our time. There was nothing to say. I was losing it, and it was almost time to leave. It took a few minutes of staring and a little weepy nose-run for me, and a lot of kisses I threw at her, then turned to walk away. It was a long walk to the opposite side of the garden where I was to exit and I couldn’t turn around. I just didn’t want to see her sitting there. I sat in my car for a minute to get straightened out. I just clung to her word “Nice”. It was nice. 15 minutes of Corona nice.

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Filed under dementia, mental health

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.

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Filed under Alzheimer's, child abuse, dementia, mental health, Uncategorized, Writing

Update on Entangled

I recently completed the first draft of Entangled. I posted it on Facebook. Maine Novels by Robert Chapman. I will add some notes to the website robertwchapman.com and return to start a first round of editing and proofing. I hope to hire a professional for these two tasks as well as doing my own work on it, but truth be told, it is not recommended that a writer proof their own work. (Can’t always see your own errors or other transgressions.) Entangled is something like a memoir, but not formatted or organized as a traditional script. I like to think that it is my testimonial to the girl I fell in love with in high school and the woman I love today. Janis resides in a Unit for people who suffer dementia. However, we continue our love and our relationship today…together/apart. This book is an attempt to share our love, marriage and the unique inclusion of what Janis brought to our lives. Janis had multiple diagnoses that were the result of childhood abuse. Our love, our marriage, our lives, were caught up in the web of that early trauma. This is about my love for her and her courage and struggle with a childhood lost.

My next step is to continue to proof the text while looking to publish. This next step also involves sending the draft for our children to review before I publish. I also have someone to do the Forward to the book. A retired LCSW with experience in private practice with trauma, and in child welfare work as well. Very important credentials for this book. Then, I also want some input into design of the interior text and the cover. I am doubtful that publishers will allow me that kind of involvement. Traditional publishing companies usually want that kind of contractual control for purposes of marketing. If they do not allow me to have some creative input then I will go back to self-publishing. (Marketing is not my priority, I don’t need the income. Besides…what am I gonna do with a million dollars? Wait…

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Filed under Alzheimer's, child abuse, dementia, mental health, Uncategorized, Writing