Blog Archives

the shortest summer, the longest winter


Note:
Folks who know us and see me often ask how Janis is doing. I don't have much to report because she is so advanced in this disease she is not presenting much to speak of. But since there are people outside of our immediate friends and family that don't hear personally from me, I'm offering this update of sorts.



The summer prior to Janis's placement, today seems as recent as only a few weeks ago. Its been years. It was a short and emotional summer. Our last summer together. The diagnosis was a 'rapidly progressing dementia'.
(So much for a rapidly progressing dementia).


I wrote about this in the book ENTANGLED. But rereading it today left me bereft. I'm sitting at the computer and devoid of words to describe that day. The day I let her go. I let her down. The fact that I was recovering from a stroke that past Memorial Day weekend now seems like a weak excuse for that decision.

I spent the afternoon with her yesterday. I gave her a facial massage with lotion, brushed her teeth, brushed her hair. I brought in some new earbuds and spent half an hour getting them set up. Gahh! I have little patience for anything in this digital world. But I persisted and we shared the earbuds. I had one and she wore the other. She only has partial hearing in her left ear. We spent the rest of the visit holding hands and listening to music. No discernable response. She looked at me occasionally, but didn't seem to recognize me. At one point as she dozed I let go her hand to do something and she reached out to grab my hand. I hug her and kiss her face and tell her I love her. No way to know if she hears or understands me. Hours go by. I watch her up face. I watch her sleep. Squeeze her hand and smile at her. When I leave I speak in her left ear (Not sure if she still hears or not she's lost all language and rarely makes even utterances.)

Lewy body dementia (lbd) is confusing to family members and friends. One reason is that a trademark of Lewy body is 'fluctuations' It means that things change often in the presentation of the disease day-to-day, hour-to-hour, for instance, they may bounce back somewhat and visit an earlier stage only to falter and continue in their decline. Where as, Alzheimers is generally a persistent descent. Some other symptoms of lbd, are Parkinson-like symptoms (shuffling walk, shaking,lack of facial expression), hallucinations, delusions, cognitive decline. Memory problems may start later. Over the past several months, and years, Janis has often appeared to rebound and visit to an earlier stage of the disease (fluctuations) only to quickly falter and continue in her decline. Not this time. The descent has been steady and observable. I'm still waiting to see her come back, but this has been a tenacious decline all this past winter. So we shall see.

It's storming today here on the coast of Maine. A light snow, and drizzle of rain at times. A raw, cold day.

That last summer together was brief. Janis and I are now in the longest winter of this disease.


People who care about me worry that I'm not moving on with my life. To that I say, "This is my life. I'm doing it right now."

I cannot really move on. There is this matter that I must attend to. We're not done yet.









3 Comments

March 2, 2023 · 9:15 pm

LOVE IN THE TIME OF CORONA~part 2

Whenever Janis and I would talk about her childhood it almost, not always, but almost, turned to the abuse she received at the hands of her parents or others. This was either directly or indirectly (as in abuse, neglect and failure to protect), received from her mother. (Her father was alcoholic and mostly absent from the home – a form of neglect/abuse, a failure to protect). She blamed her mother for not protecting her. The sexual abuse was early, pervasive, and continued throughout most of her childhood years.

I spent over 30 years in social work, working with families and children at risk. Twenty of those 30+ years was with State of Maine Child Welfare, and Child Protective Services. In CPS, I conducted forensic interviews (many times working with law enforcement) all witnesses, including the child victims, the offenders, drafted legal affidavits, court orders, and legal summaries, prepared the legal case for court, and sat beside the Assistant Attorney Generals in the courtroom, for consult. Once a child was in custody I became, as agent for the State of Maine, legal guardian of any children on my caseload. Arranged all medical/psychological treatment plans and attended all meetings for each child at school or in therapy. I worked with foster parents in their home and monitored the care of the children. I also worked with the offenders in most cases as they went through treatment plans, and monitored, wrote legal documents, attended all court hearings for children in State custody working toward reunification, or termination of parental rights; and developed case plans and legal work for adoption.
I speak of this because I was married to Janis. I understood. I not only felt deep compassion for her plight as a child, I understood the dynamics of how this occurs, what treatment means for children of abusive experiences, and the depth of the harm done.
I write of Janis’s mother as she was represented to me by Janis and her siblings, and from my personal observation of her as a mother. I knew her, and by proxy, I knew her as Janis’s mother. It is strong language to put out there how Janis suffered from this abuse. But it needs to be told. And keep in mind that child abuse is often, not always, a learned behavior, and can be passed down through families. So…who’s to blame? (Part 3 looks at this issue). Understanding the adults that these children become, most often struggling with life in ways we, as fortunate adults from relatively caring, safe and loving childhoods, often take for granted. In some cases the damage may be so profound that the adult survivors end up in institutions, prisons – or dead. The abundant research is overwhelming and damning. Most survivors are heavy substance abusers, physically, or psychologically scarred. They may not appear so to us in everyday life, but they are here; suffering quietly, or not so quietly, but suffering.

I mention all the above before proceeding. Because, of all the abuse Janis went through, the single most damaging was the emotional trauma of abandonment – that is the loss of childhood. This theme became the baseline for all the other traumas, physical, psychological, and other emotional traumas that struck her down in those early developmental years. And I had the result of this woman’s childhood in my love, in my life I had this hurt child as an adult. I can speak to the consequences first-hand. And I will. So that her life will count for something. She wanted that more than anything, to be normal – her words, “I just want to be normal.”

She wanted to count for something, and she did. But the abusive early life, made it impossible for her to fully experience the positives in her adult life. She never gave up though. She kept trying (therapy, psychiatry-medications, acupuncture, biofeedback, diet/nutrition, exercise at the gym, yoga, and more). She wanted to be creative, and she dove into a creative period providing me with some beautiful artwork that hangs on our walls at home, as well as on the walls of her room in the compassionate memory care unit she resides in comfortably and safe today. She gave us three wonderful children (and three beautiful grandchildren); she is still to this day in care, giving to others; many of the staff that care for her now comment to me on her personality! This charming, charismatic girl can still shine through and bring a smile to the faces of the aides, nurses, housekeepers, and other staff. She gives kisses and chuckles and smiles, on her best days she even speaks a few words. She stunned the staff when she survived palliative care and death, to return to us last fall. She is giving of herself in many ways still. Her life is counting for something.

to be continued ~Part 3, Child Abuse: about who’s to blame?

The book, ENTANGLED, dementia, multi-diagnosis, love, and eternity is written and in pre-publish status.


1 Comment

April 5, 2020 · 12:29 am

TIME.

 Time.

In the Memory Care Unit that Janis is in, I have met numerous residents and have learned something about their previous lives. Always, I’m interested in what they did for work. There is so much to be said for what careers or jobs these people spent their time on. It gives me pause to think of the time that we spend in this life. It becomes more apparent to me that we are what we have done. Not just in our work, but also in our daily lives. Time is the real currency. And the rules say we can’t earn it back by working overtime later on. We only get this one moment to live, just once, and then it is gone. Sort of like having a pocket full of change in life’s arcade. Spend it, because the rules say you cannot save it. And remember, that what you spend it on, says something about who you are.

So what will you spend your change on today?

A wise, but brooding and serious man once said, “Do not waste this life.” I suspect he lived in ancient times and likely was a monk.

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November 3, 2016 · 7:12 pm