LXVI. The Caregiver Family and Thoughts

Saturday, March 31, 2012Thelma & Louise dreams persist even among women of a certain age, our bodies may grow old, but our minds remain young. For instance, in my Linkedin “Women Writing for (a) Change” discussion group, among us caregivers and former caregivers, all near my age, we’re thinking about getting together and taking a Thelma and Louise trip. There are too many of us to fit into a car, so we’ve decided to get a bus – a VW bus.

I just watched a really sweet and poignant film, “Ladies in Lavender” (2004), starring Judi Dench and Maggie Smith. Set on the coast of Cornwall, England, in 1936.  Judi Dench and Maggie Smith portray spinster sisters, around 70 years old. They arise one bright clear morning after a terrible storm during the night, walk down through their English garden to the shore to find a body washed up on a rock. He is face down. “You turn him over,” say Judi Dench’s character, Ursula, to Maggie Smith’s Janet. Janet turns him over and they find he is a young man, barely alive. They get help, take him into their home and nurse him back to health. In the process, they find he is Polish and an accomplished violinist and Ursula falls in love with him.

Judi Dench and Maggie Smith are such superb actors, and longtime friends in real life, like sisters, that I have to remind myself that they are acting and not the sisters of the story. The music, too, is beautiful, romantic violin pieces by Bach, Paganini, Massenet, Mendelssohn, Sarasate, Debussy and others. The story is sweet, the acting superb. The seacoast scenery is fabulous, the locals may as well live near me, on the Eastern Shore of Maryland. The actors and the producer/director, acclaimed British actor Charles Dance, who wrote the screenplay based on a short story by William J. Locke, call the movie a fairytale. Oh, I don’t know. Maggie Smith, so good at delivering lines – as you know if you’ve seen the recent PBS stunningly successful series, Downton Abbey where the creator/writer Julian Fellowes gives her in the role as the Dowager Countess all the best lines – says in discussing Ladies in Lavender, “Women – I don’t know about men – but women can fall in love at any age, no matter how old. It’s odd.” (I may not have quoted her word for word, but it’s close.) Even at 70, I find I have the same feelings as I did at 40, or sometimes at 25.

These sisters live in a remote area along the rocky English Channel coast, where, still feeling the trauma of one great war, they are under the mounting dark thunderheads of another. As caregivers to this young man, who speaks no English but a little German as does Janet, the sisters are forced to review their lives, how they felt then and how they feel now, how they lived then and how Janet, the pragmatist, feels they should comport themselves now, in their older years, and should they report this talented young musician to the authorities.

They are isolated from the greater society, yet the village people lend a hand. These days so many families’ members are scattered miles and days’ journeys apart, so a family member can’t just drop in to see how things are going. And then there’s the thing about everybody’s being too busy, driving kids from one activity to another, scraping together funds to pay for kids’ sports, pursuing careers, texting.

For myself, as I have found with the caregivers in our discussion group, we’re not thinking about how to comport ourselves. Whether family members insist we take time off, to family members who drop in occasionally just to lob bombs loaded with criticism, to dealing with healthcare workers who slack off or drop the ball, to having a supportive team, the caregiver is still alone, executing and coordinating events, and cleaning and feeding the one for whom they are the carer.

But, when it’s over, say the caregivers, in general it takes about four years to regain yourself and settle into a new life on an even keel.

Yet, ultimately Janet and Ursula want to live their Thelma and Louise moments. Totally: I forget how old I am at times. For me, the best therapy has been my music. Over the past five years I continued to think I didn’t have time to play my guitar. It took our young music therapist – I shall call her Sarah, after Sarah Brightman, because like Sarah Brightman she looks and sings like an angel – to suggest I play it. OK, I need to play it, I thought. She is guiding me and being a caregiver to me; I’ll make the time to play it. I view this as an opportunity.

I practice nearly every day. The developing calluses on my fingers make it hurt to type. But I manage. When I play, I don’t want to stop. My hurting fingertips make me stop – that and I have to cook dinner for Emma and me so that it is ready when our aide, Daphne, arrives. When I play, I forget everything. I play the songs I wrote 25 to 40 years ago. I almost forget that this week Emma has stopped eating much.

Emma’s Dr. Patel visited two weeks ago. He came in, immediately went to her bedside, stood over her, observed and thought. He looked like an angel standing there. Finally, he spoke. “It’s not imminent,” he said. But, then, “Have you made arrangements?” I told him I had completed the fundamentals. He said, since she is calm and no longer agitated, that we should wean her off the Haldol, gradually decreasing her dosage over two weeks. I have done so. She discontinued taking the Haldol this past Thursday. Also on Thursday, her blood pressure plummeted almost to the danger zone. Tess, our Hospice nurse, phoned Dr. Patel and he said to discontinue the blood pressure medication. So she is off all her medications now and we are observing, and trying to turn her and place her in bed so that her raw bedsores don’t worsen. Dr. Patel said that patients in her state need only a few bites of food a day. He said her liver is still metabolizing. Before he left he said again, “Make arrangements.” Emma was eating about half a plate of food twice a day until Thursday. Now, with encouragement, she will eat a few bites per meal. The upside of this is that I have something readily available for myself to eat at lunch.

My Hospice team realizes that carers need care; and as my mother sleeps most of the time now, the balance of the caring has shifted towards me, for which I am most grateful. I think everyone should have such a team of support all the time, no matter what. Remember, I am not surrounded by immediately concerned family. It’s more like – Them: “Oh, how is she doing?” Me: “Oh, you would be shocked if you saw her. She looks like a Holocaust victim, sunken cheeks, sleeps all day and with her mouth open. I can no longer color her hair, so it’s gray; you’ve never seen her with gray hair; it’s always been dark.”

Believe me, even with the support of the Hospice team, I still experience a lot of stress, so it takes just a nudge to push me over. Thank goodness for their support, even if they do effectively block me from the doctor when, at this stage, I have many questions, questions daily about each of Emma’s downturns: “What am I to expect next? How many days? What’s tomorrow? Please don’t let me be blindsided. I am not a doctor or a nurse. I have always been into well being not ill being. You know what’s next. You have people dying right and left all around you every day. I don’t. As a layperson, I have no idea what’s next, beyond speculation.”

On her last visit two weeks ago, Sarah taped me singing the songs I have written so that she could work with them, creating harmonies and counterpoint-picking rhythms. This Friday, when she came, we immediately sat down and played a song I had written in Southern California in 1970 and copyrighted, “Gypsy Curse.” We played it cold to see what might work. Sarah graduated from Temple University a few years ago with a major in opera. Friday she recorded our practice session on her iPhone; later she emailed me the recording. Due to popular demand, I am posting it here. Please, please don’t leave my blog and never come back after listening to this. It is a rough draft. I promise never to appear on “American Idol.” I post our recording here solely to exemplify the therapy of music and how transporting it is, relieving the stress and returning us to realizing ourselves.

      1. Gypsy Curse - 1st April 2012

This is a difficult time – not the physical stress I was under previously, but just watching Emma slowly slipping away. My mother loved music and I like to think on some level she heard Sarah and me performing my song Friday in the living room by her bed. Were she consciously aware, she would have enjoyed it.

Sarah’s musicianship makes our performance sound good, she is so talented. For me, after all these years, finally, I can be like my beloved Beatles, performing and recording an album. Sarah and I decided that we could record these rough drafts as an album of outtakes, like the Beatles, and make millions of dollars. I call our duo The Angel and the Foghorn.

Step aside Giacomo Puccini.

—Samantha Mozart

 

 

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