KATHRYN LEIGH SCOTT: Actress and Author on Advocating for Caregivers

Actress, author and activist Kathryn Leigh Scott has written nonfiction before. Last year she published Last Dance at the Savoy, an intimate memoir centering on her relationship with her late husband Geoff Miller as he struggled with the disease Progressive Supranuclear Palsy, a neurological condition for which there is so far no cure and no treatment. Miller, who at the age 24 became a founding editor of Los Angeles, the first city magazine in a major market, had always been a vigorous and vibrant man with a wide range of interests. He passed away on April 16th 2011. Her new, short work, The Happy Hours, centers on one specific aspect of Geoff Miller’s last days.

Scott had just returned from Europe when we spoke about her new mini-book, The Happy Hour, which details how she brought some serenity and happiness to the end stages of her late husband’s battle with PSP.

“England was wonderful I really enjoyed it,” she says, her voice bright and cheerful. “I had lots of good times with old friends. Saw some plays. Had some good meals. It was lovely. The trip to Norway was exceptional because I traveled for 10 days with family members and we went hiking up in my mother’s part of the country. Beautiful midnight sun, reindeer herds running across the snow. Beautiful waterfalls, fjords, and then we went up to my father’s part of the country for a couple of more days and a big family reunion, it was lovely.”

Genesis of The Happy Hour

How did she get the idea to write The Happy Hour?

“Well actually, it had quite a lot to do with you because you wrote about my blog pieces. Remember when I was running “if not now, when?” You commented on it and so I was writing that series of blog pieces about “if not now when?”, which has been my mantra most of my adult life, and one of the editors from Grand Harbor Press happened to see them, which led them to Last Dance at the Savoy. They were interested in having me write three books having to do with caregiving, but also moving on from caregiving.”

13 GGM KLS autumn 1996
Courtesy Kathryn Leigh Scott

There is, she recognizes, difficulty not for only the person suffering from a debilitating disease, but for that person’s loved ones, friends and family.

“The idea for The Happy Hour really came about because Geoff, my husband, was was a very social man. He was the founding editor of Los Angeles magazine the first city magazine in the country, and he loved people. As he became more debilitated and he had the inability to speak and so on, more and more people, old friends, old colleagues stopped getting in touch. I recognized this –  there is discomfort at having to deal with someone they had once known as a vital strong person who had diminished, and, quite frankly, to be reminded of their own mortality. And, so I instituted something called happy hour.”

Which, it turned out, had its roots in happier days, when Geoff was still healthy and able to enjoy his favorite activities.

 

She says: “Geoff and I had always loved happy hour. We loved going for long walks and going to one of our favorite restaurants where they had bar foods and drinks at half price in the early evening, and sometimes that became our dinner. And so I thought why not have happy hour at home. So the happy hour is really about how to convert what is essentially an invalid’s bedroom into a place that is inviting and makes people feel sociable. And I didn’t realize until I really started thinking about all of the things that go into it – things to accommodate and create the atmosphere that would induce people to want to drop by and spend time.”

Visiting a sick person can be difficult for the visitor

She recognized that visiting a sick person can be difficult in itself. Knowing that her husband was facing the end of his life of course meant that all challenges were immediate. “If not now, when?” took on even more meaning for her:

“I can be emotional and I know how difficult it is for me to go to the hospital and and visit somebody that I care very much about and see them suffering, or when I see somebody trying to put their best face on and try to stay hopeful and upbeat in the face of terminal illness – it’s very difficult. And so I recognized that the people who were coming to see Geoff would have those feelings. So it’s being sensitive to that, giving people time alone when they need it and want it, not serving as a gatekeeper, providing food and drink as quite frankly a diversion, and making everything seem as normal as possible so that people don’t have to talk about illness or be reminded of it or see it but have a sociable time. So The Happy Hour is really about making the most of that time you have together because you know it’s not over till it’s over. So, it ties in with ‘if not now when?’”

Geoff did not necessarily want to talk to about his own illness.

“And I have to say Geoff was absolutely at his happiest when people came in and talked about what was happening in the world, what was happening in their lives – in other words sociable fun kind of conversation,” she explains.

New trilogy of books covers entire spectrum of caregiving

Scott explains the new trilogy covers the entire of spectrum of caregiving, from inception to inevitable conclusion, and the need for caregivers to sometimes give themselves a break:

The Happy Hour is really about making the most of the end of life. The next book is Now With You, Now Without, which comes out in October, is a much longer book and will be available in print as well. That book goes beyond caregiving to life after caregiving. That moment when you start feeling real grief and you stand there with empty hands and dealing with it because your time is no longer occupied by caregiving. And grief can consume you. Now With You, Now Without is about how to deal with it. How to live with it without brushing it aside. And then the third book is A Welcome Respite, about the need for caregivers to give themselves a break. I’m not telling people what to do I am simply sharing my experiences as a caregiver and it’s what I learned because I think it’s helpful for other people.”

4A GGM smiling 1994
Courtesy Kathryn Leigh Scott

Although it seems that The Happy Hour could easily have been covered in Scott’s last book, Last Dance at the Savoy, a good deal of time and experience elapsed between the writing of the two.

She says: “I will now have written four books on caregiving, which comes as a huge surprise to me. It happened organically and I am very glad I did it but it is still a surprise. Last Dance at the Savoy was written only about a year after Geoff passed away and was based on the day-to-day journals that I kept at the suggestion of a doctor, just to track the progression of his disease and I used that as a template for Last Dance.  The next three books were commissioned for the different aspects of caregiving. I had already written Last Dance and people embraced it for which I am very grateful but this goes beyond Last Dance, this is geared toward more specific things. So Happy Hour has a different function. Happy Hour is very much a part of my last nine months of my time with Jeff.”

Caregivers often have to face their own health crises

It may very well be that the caregiver may face their own health crises while having to take care of a loved one:

“You will see that that is very often what happens. I have many friends who have dealt with very serious health issues of their own which were really exacerbated by the work that went into caregiving, which is why I wrote the third book in the series which won’t be out until next November. I brought home hospice into our lives when I realized I couldn’t give Geoff the care that he needed on my own.  I consider it quality of life care, not so much end-of-life care. In Geoff’s case the care that he received from in-home hospice was so good that he went off hospice care for a while. That was another point that I did want to make because I think hospice care is very much misunderstood and I suspect that a lot of people don’t even know that home hospice exists.”

Even as Scott had to take on the new and unfamiliar role of caregiver to her husband, she didn’t want to let go of their relationship as husband and wife, and the emotion in her voice is evident as she discusses it:

“You know I wanted to be Geoff’s wife, companion, help mate – I wanted to be all of those things and with home hospice giving me a hand with his medical care it afforded me the peace of mind to be that person and that is hugely important because as soon as a caregiver burns out they are no good to themselves they are no good to the person they are caring for. What I wrote is what I really wished someone had been around to tell me when I was going through this.”

18 GGM KLS 2004 portrait 2004 cropped
Courtesy Kathryn Leigh Scott

Dark Shadows

It only seems natural to ask Scott, who originated the roles of Maggie Evans and Josette DuPres on the classic Gothic daytime drama Dark Shadows (ABC, 1966-1971), and starred in the 1971 MGM feature, House of Dark Shadows, about what’s going on in the world of Dark Shadows, whose devoted fans have never been willing to let the show die.

“I just spoke with Lara Parker and we’re going to be doing a cruise October 1st for a week,” she says. “We sail out of Boston and go up the coast and of course Lara has written all those wonderful novels. We’re going to be in Portland Maine, and all the way up the coast! I don’t know that are any other Dark Shadows events scheduled right now, but we should do something – this is the fifty-first anniversary of the show, after all! Having gone for fifty years, I don’t really see any reason for it stop at this point. And here I really have to hand it to our Dark Shadows fans, who I always thought were a cut above the fans of other cult shows.”

And as a longstanding fan of Dark Shadows myself, who am I to argue?

Last Dance at the Savoy is available in both print and e-book editions. The Happy Hour is currently available as a Kindle Single through Amazon.com. Her upcoming book, Now With You, Now Without You, will be available in both print and e-book editions. It is now available for preorder through Amazon, and will be officially released on October 31, 2017.

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