SNAPSHOTS is inspired by the notion that without lived experience, it is often difficult to see more than mere glimpses into the lives of patients, caregivers, and loved ones affected by a particular disease. This collection of images was created in commemoration of the two-year anniversary of Fragmentation, Annie’s Honors in the Arts show inspired by the stories of those both experiencing and witnessing the degenerative progression of Huntington’s disease (HD). In preparation for SNAPSHOTS, Annie reached back out to the patients and caregivers involved in Fragmentation to check-in, catch-up, and try to understand what two years mean in the life of someone embodying a neurodegenerative disease. Though imperfect at best, SNAPSHOTS is an attempt to show more realistic glimpses into the inspirational life stories of those affected by HD.
SNAPSHOTS (shown at Stanford in May, 2016) is the culmination of Annie’s work over the past three years with HOPES, the Stanford Arts Institute’s Honors in the Arts Program, and members of the Palo Alto HD Support Group.
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Maureen. We re-did the front yard. That was a big project because we did it all ourselves. Because of the drought, the Santa Clara Water District has a program so if you take out your lawn and replace it with drought-tolerant plants, which is what we did, you get $2 a square foot. And that was 1,000 square feet. 68 plants. I bought a lot of plants, he dug a lot of holes.
That was a big project that took months. All of the plants have square footages assigned. We ended up getting approved but we couldn’t get all of the plants because it was winter. So we had to find substitute plants. It was like a challenge. It was kind of like doing a puzzle – I kind of liked it.
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David. It came out in 1983. It’s called Crystal Castles. I’m sure you’ve never heard of it but in its day it was very big. It sold 5,000 arcade units and the game I once estimated was played 400 million times and took in $100 million in quarters in just a couple years in the 80s. That’s a pretty big influence. People who are in my generation all know the game and have all seen it. I can walk up to strangers and they’ll know – that’s my claim to fame.
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Lisa. We’re pretty status quo, really. And I guess that’s good. Health-wise, it’s pretty status quo.
Last time I was here, something that really struck me was when you referenced a little book your sister gave you?
Oh yeah, The Precious Present. It’s just this little book [mid-conversation, she went over to the living room bookshelf to retrieve a small book]. My sister gave this to me in 1999. It’s just all about today’s your gift and don’t think about what tomorrow brings and what the past had. I mean we don’t know – no one knows, really – what’s going to happen. It’s a good reminder not to dwell in the past and not to think too hard about the future.
I’m going to have to re-read it.
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Robert. What does it feel like to move?
It still doesn’t bother me. My great grand children love it. You know, they’re watching me. They’re not going to play, they’re watching the old man twitch! I realize that for some people it is a distraction…and I love it.
If I can provide some entertainment – good! There’s nothing that’s gonna change. Whether they look at me or not, I’m still me. And I’ve been happy with me for a very long time.
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Michael. If you asked me to summarize our conversation, I couldn’t do it. I find that hard and I used to not. Cleaning up, I mean why can’t I clean up the frying pans better? I’ve been instructed many times.
A couple times ago, I was going to a high school reunion and I went to the airport and they said we don’t have any flight today, it was last month. I booked it for last month. I once made a mistake booking and was in an airport for 12 hours because I mixed up the difference between am and pm.
Is that frustrating?
I’m still positive, but I need to have someone check me.
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Jim. We were getting ready to do our taxes – TurboTax. I stabilize myself on the door frames and walls and I went to go to the dining room and missed the doorframe. I made a hole in the hardwood floor with my teeth.
[Mary, Jim’s wife started laughing]: This was just in march, so we have the teeth marks in the floor.
Jim: I have a walker now. What else do I have now?
Mary: Sciatica.
Jim: Sciatica.
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Mary. That’s the other thing – eating and swallowing has changed. He went through a time in the fall when he had a couple episodes of choking when he couldn’t swallow. But he’s calmed down on that. I guess we’ve learned too, to not talk when we’re eating – which we shouldn’t anyways – but you know not to hold a conversation at a meal. Which is pretty boring at times. But yeah, because things do distract him and he needs his space.
You know Annie, I think things are gradual. So you don’t think about it too much. You just kind of adjust for it. Not always willingly, because it is frustrating. But more frustrating for him. I have to have empathy for what he’s going through. I’m not in his skin. And I’ m not the most patient person, so we’re both learning.
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Marilyn. We were married for 54 years, had raised two daughters, both college professors, had traveled North America and the world, and were looking forward to even more travel that was not to be.
She was diagnosed with HD in 2010 at age 73, and I became a 24×7 caregiver for her last two years with significant help from hospice and other part-time caregivers. She lost her ability to think, speak, and walk. She was only 65 pounds when she died in 2015. While difficult, frustrating, and fatiguing, I slowly learned that caring for her every need was an honor, not a disagreeable or distasteful task. Yes, it was tough, and I had more than a few moments of impatience and anger, but it was the right thing to do, and in the final analysis, it was a labor of love, truly a privilege.
In the words of Indian poet Rabindranath Tagore: I slept and dreamt that life was joy…I awoke and saw that life was service…I acted and behold service was joy.
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All pieces were done in pencil and completed in 2016 by Annie Rempel.
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Before the diagnosis my husband would lose his temper at me. He’d leave the house and I’d not know when he would return. He wouldn’t go to marriage counseling, so I did. What was I doing wrong?
Then one day he lost his temper at our child. I’ll never forget that moment, and our child holds it still. Our family was hurting.
Years after diagnosis I suddenly realized the temper episodes stopped. Cold turkey!
I could look back before the diagnosis, and I saw we had been in denial, and I realized we worked very hard at supporting our denial. Perhaps my husband’s anger was part of his denial tactics, a masquerade of a “normal” person under stress. Before the diagnosis the stress of denial disrupted our family, and after the diagnosis, Huntington Disease disrupts our family, too. But now struggles are genuine and contain a good measure of peacefulness and acceptance.
I subscribe to a caregiver’s newsletter from Mayo Clinic’s Alzheimer’s Disease Research Center. Recently it had an article on “Pleasant Dementia”, the characteristic of some people with dementia who, like my husband, are “stuck in the moment” which is one filled with ease, appreciation for each sunrise, deep love for his family and silly jokes.
For us, going from before-diagnosis to after-diagnosis is not about losing your whole life, although the losses are many. Rather it’s about replacing denial with acceptance, anger with letting go, and worries about the future with being fully present with today’s life.
The author who submitted this story to HOPES wishes to remain anonymous
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After noticing some unusual mental and physical behavior, appointments with and tests by a neurologist, we got the startling diagnosis of Huntington’s disease (HD) in March 2010. It was an unwelcome surprise as we were not aware that this genetic brain disease was in her father’s family. Katie’s reaction was, “I don’t want to know that…” and even now, almost five years later, while resigned to her fate, there’s still some denial.
I was glad to know what we were dealing with, but had no idea that I would spend my retirement as a 24×7 caregiver. We’ve been married 53 years and had plans to continue the world travel that began in Japan after our marriage. But it was not to be. Our new adventure is learning about and managing the symptoms for this neurologically degenerative disease for which there is no cure.
HD often first shows up with involuntary movement known as chorea (Greek for dance) or tentative gait, and Katie began to walk very slowly even pulling me back if I had her arm. And, as home manager, she was having difficulty making decisions, paying bills, handling checks and compulsively collecting newspapers. In the last year she has become more emotional—sudden crying, anger, angst.
The diagnosing neurologist referred us to the Huntington’s Disease Center of Excellence at UCDavis where we met with the HD team for an evaluation. A year later we switched to the UCSF Memory & Aging Center that takes a more horizontal approach to neurological diseases and was geographically closer.
We met with several team members for observation and consultation. The prognosis was annual observation that has become semi-annual, and for the past 12 months the anti-anxiety drug Mirtazapine before lunch and bed. If she’s still agitated and unable to sleep we back up the Mirtazapine with Melatonin.
As it turned out the most significant meeting was with the physical therapist, who, after a brief interview, showed us strength and balance exercises, and how to get up after a fall. But her most important recommendation was: “Get a dog!”
It had been about 18 years since our last dog. We had enjoyed a black Lab, then a Siberian Husky while our two daughters were growing up, but they had gone off to college and out into the world, so we did not get another after the Husky died.
Our younger daughter had been advocating a dog for several years and Katie, who had been our leader in acquiring dogs, had said she would like a lap dog that would sit with her in the car or next to her on the couch while she watched TV. I had balked at the idea as I thought it would just be more work for me.
While thinking about a dog, we joined two HD support groups, one for caregivers only, the other for caregivers and patients. Both formats are good, but I found the combined group to be more helpful as hearing from those affected and those who care for them was usually enlightening. And it didn’t seem that caregivers held back in talking about their challenges, problems and successes.
We connected with some distant relatives and learned about other family members who had been affected. I talked with the niece of one of Katie’s cousins who was just 50 and was about to enter a care facility. She has four children, a husband who has left, but a loving sister who has taken care of her.
I reached out to Care.com and posted a physical exercise job, got amazing response and found a professional caregiver who began a weekly Walk &Talk with Katie getting her out of the house without me—good for both of us.
I met with Family Caregivers Alliance to learn about their services, educational programs and workshops. I asked our housekeeper to come every week and do some part time care giving. She, in turn, introduced me to a caregiver relative who comes weekly for six hours so I can see my grief counselor and meet up with friends.
Finally in September 2012, just after Katie’s 75th birthday, we went to an SPCA Open House Adopt-A-Pet Event in San Francisco. We couldn’t find the “right” dog so Katie said, “Let’s go to Berkeley Humane,” a place we often passed. When we told the attendant that we were looking for a small dog, 20 pounds or less, 1-2 years old, she said, “You should meet Flo who’s in the next room.”
It was love at first sight. Flo is a tan Border Terrier-Dachshund mix with brown eyes, black eyebrows and muzzle. We took her for a walk and said we’d like to “rescue” her. After two hours of paperwork we got in the car and took our new little friend home. I told Katie that she still had good dog karma.
Flo was just one-year old, in late puppy-early maturity development, and after some environmental adjustment was just fine. With our daughter and son-in-law we took her to a park and to everyone’s delight she loved to run and fetch a ball, bringing it back most of the time. With training she has become a great little retriever, but most of all she’s become a comfort to Katie and a little pal for me.
Having a “third party” helps us keep a positive outlook, and she is a great stress reducer as she loves to play with a ball or chew toy in the house, then curl up in Katie’s lap when we go out in the car. Katie has become less mobile so holding the dog in her lap allows me to run into stores for quick errands.
Flo is a great little watchdog barking when the doorbell rings, then settling down after the guest enters our home. And, she likes TV. Her favorite program is the PBS Nature series, and she’ll often watch an entire show, charging the screen and barking at animal close-ups, but just watching during the long shots.
One of the most rewarding values for me is dog and dog owner sociability. During our early morning and late afternoon walks we have met nearly a dozen new neighbors down the street and around the block because the dogs react to each other and their owners generally talk, get acquainted and sometimes become friends. These daily encounters are welcome mini-respites.
One dog walker has become a part-time caregiver. She and her dog come three days a week for two-hour periods allowing me to do some work around the house, run errands and attend my Tai Chi class. The dogs play to everyone’s delight. We now have part time caregivers everyday but Sunday.
We caregivers need to take care of ourselves so we can be effective in helping our loved ones and those for whom we care. Even with part time caregivers, support groups, workshops and professional guidance, I have a long way to go to become a better caregiver as I get frustrated, fatigued and angry.
Care giving is more art than science. And an unconditionally loving, four-legged friend can make a big difference.
This story was originally submitted to the 2014-15 John A. Hartford Foundation Story Contest. The author who submitted this story to HOPES wishes to remain anonymous.
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I get an odd rush out of telling people how nervous I am about the Bar results coming in today. And it’s true, I suppose I’m somewhat antsy about them and it’ll be great to know officially. But I’m not actually worried: I do well on standardized tests. I studied for months and I felt fine when it was over. Yet here I am, refreshing the results website every two minutes, frantically dissecting with my colleagues what we can remember of the exam questions, feigning more nervousness than I have. It took me until 2:53pm today to realize why:
I didn’t get to do this the last time around.
Years ago, during a summer break from college, I worked as a lowly intern at a small newspaper. I didn’t get to do much substantive work (again, intern), but I enjoyed the office and my co-workers and the blueberry danishes they sometimes brought in. But as the summer crept along, tension and frustration churned in my stomach. I knew what was coming. Before the job started, I’d made the first appointment to get tested for Huntington’s. I respect people who make the decision to hold off on testing, to let it go until there’s a pressing reason for it. I wish my brain could work like that. But it has to know more, has to keep asking questions, has to know more than it has earned and more than it should. It was a surprise to exactly no one when I chose to get tested almost immediately after finding out about being at risk. I also knew myself well enough, however (at least I thought I did), to postpone getting the results until the day after my summer job ended in case things went poorly.
From the moment the phlebotomist walked away with my sample, the summer turned slow and agonizing. For all my confidence in the psychiatrist’s office about my support network, I didn’t trust myself enough to talk to any of them. I didn’t want to burden my family about it, so I tried not to let out more than small snippets of my anxiety to them. My friends were on the receiving end of slightly larger bits of crazy, but there was only so much stressing I could do over e-mail before I knew that their eyes might be glossing over or they might just skip reading my epic, five-page and completely self-absorbed email entirely. (How dare they, I know.) My boyfriend, a truly wonderful person who played a key role in this support network, wasn’t my boyfriend anymore. I’d picked fights and pushed him away ever since learning about HD, and even when I realized I wasn’t being fair to him, that I was projecting my fears about what was happening and what might happen onto him and our relationship, I couldn’t stop myself from deciding I was finished.
That left my co-workers, the people I spent most of my waking hours with. Of course I couldn’t talk to them. Those were the people from whom I’d be seeking recommendations, the people with whom I wanted to work in the future, and to let them know that my mind wasn’t entirely on work so much as it was on the degenerative illness I might have that would destroy my brain function? Not a great idea. Looking back on it, I was probably underestimating their empathy (and overestimating the impact that co-workers during one college internship would have on the rest of my career), but not talking about it at all to them did help me maintain a professional facade in the workplace when I felt nothing but nerves inside.
The waiting seemed endless, of course, until it ended. My best friend sat next to me holding a box of tissues and the genetic counselor looked so somber and the neurologist was direct when he told me I fell on the wrong side of 50/50. For a moment, I wanted to be back in the waiting, but then I felt the knot in my stomach dissolving and was grateful that, no matter what was in store, at least I’d made it through this part.
The pass rate for the Bar exam I took is a little over 50%, unfortunately and eerily symbolic of that summer a few years back. But this time I’m waiting on results that I put a great deal of effort into, gave myself the best possible chance on, and frankly, did well at. (If I failed, I take this all back.) So I’m not nervous today, not by how I’ve started defining “nerves” since I took my HD test. But everyone else seems to be, and I’m happy to make a show of it for my co-workers, for my friends, and for my parents. My parents have called and e-mailed often, wanting to talk about what the waiting is like and how excited and nervous they are. My mother even told me about a nightmare she had about waiting for Bar results. (I wouldn’t be surprised if, a few years ago, there were lots of nightmares about the waiting that she didn’t and never will tell me about.)
And when I get my results back, I will post them on Facebook, because there’s no one in the world I have to hide it from.
The author who submitted this story to HOPES wishes to remain anonymous.
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HOPES is excited to present a new Stories section on the website! This section is meant to be an open space in which individuals affected by Huntington’s disease (patients, caregivers, and friends) can share their experiences with HD in the form of anonymous text excerpts. We believe the sharing of narrative can have healing qualities and promote connectivity within the greater HD community.
Stories can take the form of submitted text or transcribed, in-person interview. We are open to all forms and styles of writing. If you are interested in submitting a story or setting up an interview, please contact HOPES member Annie Rempel (arempel@stanford.edu).
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