Water in the Desert
AN INTERVIEW WITH HEATHER JARMAN
Before we start with the interview, I want to take this opportunity to brag on my Mom a little bit. This will make her very uncomfortable. She will deal.
People often recognize Mama Jarman for her intelligence and capability, and these aspects of her personality have been vital to getting me to where I am in my medical care. However, she's rarely noted for her compassion, love, and devotion—which I believe to be her more dominant traits (and that's saying a lot if you have any idea of how smart she is). She is the best caregiver, advocate, and companion I could possibly ask for. From washing my face in the hospital, to holding me when I'm emotionally spent, to reading me funny Reddit posts before bed—her constant presence in this isolating life has been the greatest gift. Her job is thankless and unglamorous, yet it really makes all the difference.
When I get told by my mom that people are thinking or asking about me, I’m very grateful for the sentiment, but I also feel a pang of sadness. I wonder if they asked her how she was doing, or gave her space to talk about her experience. I find that they usually don’t. So, to our tiny audience, I’d like to give a friendly reminder to never overlook the caregiver. Illness often takes as large a toll on them as it does the patient. This is certainly the case with my mother.
Now let me get down from my soapbox, and we’ll get to the questions.
A: So mom, tell me a little about yourself.
H: Talking about yourself really is the worst. I’m an introvert and a bookworm. My ultimate childhood fantasy, besides becoming Princess Leia, was to run away and live in the most beautiful library in the world. My happy place, in my mind, is a library, preferably adjacent to an Ottolenghi food shop. I once spent an afternoon at the British Library and it made me weepy. I mean FIRST FOLIO?! did achieve my goal of being a published novelist and wrote a series of media tie-in novels for Star Trek in the early ‘oughts (2000-2007). Fingers crossed I can resume fiction writing soon!
A: What do you do as a caregiver?
H: I feel like a symphony conductor. Every aspect of Abby's life has to be researched, organized, planned, executed. One in her novella of diagnoses is dysautonomia. This means her brain doesn’t properly communicate with the functions in her body that are supposed to happen automatically. Her body doesn’t regulate temperature properly, digest food well, she breaks out in hives or rashes randomly, sensory input like light and sound can make her ill if her nervous system is really excited. So my job is to assess where she is at and address those issues. Does she need wearable cooling items? Does her hand soap give her hives? Does her smoothie take 18 hours to digest? Do the lights need to be on, dimmed or off? Has she drunk her 4 liters of electrolytes—when is the last time she took her blood pressure? Sometimes she is capable of managing these issues for herself, but sometimes her brain fog is too limiting. If she needs mental health support, sitting beside her and physically being there is most important. A lot of my time and energy is spent devising work-arounds for logistical problems that confront Abby, or doing medical research. I am the general contractor of a medical team that has a lot of pieces. Then of course there are the day to day realities of running a household and my obligations to my husband, my other daughters, my two dogs (boxers!) family members and friends.
A: I [Abby] am the last of your children, so you expected to be an empty nester by fall 2014. You had planned a post-child life. It was supposed to be your “me” time. What have your struggles been with identity and purpose? Things you have learned about yourself and what you want to do going forward as a result of that?
H: Wow. Loaded question. In the years leading up to your HS graduation, I had started to brainstorm what was next. My ideas ranged from becoming a nurse, a lawyer, or an urban farmer (an area that combines two things I’m passionate about—cooking and addressing poverty.) And traveling! India, Nepal, Thailand, Vietnam, Tanzania, Australia…SO many ideas. First, I think, I struggled with grief. I went through a time that I couldn’t look at social media because I was so jealous of all the things other people were doing that I couldn’t do. I was angry. Angry at God. Angry at the universe. Angry because I was one of those “good” people who returned the shopping cart to the store--I generally try to be kind and live in a communitarian way. I felt like I should have built up some karma points and it pissed me off that I was left with this open ended trainwreck of a problem. It called into question everything I assumed about my life and my identity. Reconciling myself to this idea that I might be a carer indefinitely has been a process. So for me, letting go of pieces of my identity that prevented me from moving forward and growing has been essential. Stripping off the barnacles and finding the core that matters. My therapist would tell me I needed to stop “should-ing all over myself” – stop defining myself by things I SHOULD do. It’s a tricky balance and I haven’t always succeeded. What I’ve learned about myself is that I need to live from my gut. I’m not saying that obligations are wrong, but how many choices do I make because of other people’s expectations? If I want to paint my living room yellow, I’m going to paint it yellow. I don’t care if it is on the Pantone palette of the year.
A: How do you negotiate how you spend your energy with caregiving—you can’t give of yourself if there is nothing left to give. You have to put your oxygen mask on first.
H: This is honestly where I’ve messed up and paid a steep price with my own health and well-being. Jane Austen famously wrote “I have no notion of loving people by halves; it is not my nature.” Like on those old medieval maps that featured “Here be Dragons” at the edges, I walk right up to the dragon’s mouth to singe my eyelashes before I back down. My therapist and I have spent the last years devising coping strategies—things that I needed to do, just for me, that had no Abby related ties or ties to familial or other obligations. Most of them are expected—exercise, meditation, healthy diet, saying no to toxic people. What meant the most to me was a volunteer position working as a teacher in a women’s prison. I would go in, usually every other week, and hold classes on spirituality with women who signed up. Often the classes tied into their 12 step program recovery efforts. Working with these women filled me up and gave me the strength to keep going. I learned so much! Covid, of course, shut down all prison outreach. Finding new coping skills has been…..interesting. This blog is one of them!
A: You are a natural caregiver. I’ve seen your commitment to helping others with their long term struggles over the years—often, as we just talked about, to your own detriment. What qualities do you think you have that make this kind of labor so instinctual?
H: I have never believed I was an intuitive caregiver. I always approached caregiving the way I approach anything—I look at the situation, examine the components and formulate a strategy that works for the individuals involved. I am a believer in building skills and then taking those skills to apply to situations that require them. For example, I was a respite caregiver for my sister in law who eventually died from causes due what is easiest explained as a cancerish tumor. She ended up with ports, IV feeding, ostomy bag, morphine pump etc. One night I was visiting her at the hospital and she was having problems with her ostomy bag. She knew how to change it but needed help. Instead of calling the nurse, she told me what to do to help her out, I helped clean her up and took care of other maintenance she needed done. After that, the nurses taught me what I needed to know so I could fill in as a helper at home from time to time. I learned a lot about her illness, hospice, palliative care, dying—because that is what the situation needed. I took the same approach to being a mom. I was a crap babysitter as a teenager. Babies don’t like me really. But I figure out the individual baby and go from there. I come from a place of morality and ethical responsibility when I’m a caregiver. How would I want to be cared for? How would another parent want their child to be cared for? And then I act accordingly.
A: What do you think are the most important qualities for a caregiver to have?
H: Persistence. Patience. Open mindedness. HUMILITY. A willingness to learn new things. The ability to sleep anywhere, under any circumstance, and entertain yourself while spending countless hours in waiting rooms in horrifically uncomfortable chairs. Knowing when to walk away and accept what you can’t change. There is a lot of diplomacy in dealing with highly educated medical professionals. Learning what NOT to say is important. When to use a quiet voice and when to yell. Abby likes to say one of my love languages is research. I would add logistics. I am very good at sorting those out.
A: What is one thing you wish that people understood about your role as a caregiver?
H: Another tricky question. I wish people understood that I feel continually pulled between meeting the needs of my actual job, caregiving, and people around me. There is always tension there and it is rarely healthy. People will approach with good intentions, but sometimes those good intentions make me feel more stress. Like someone will say, “What can I do to help?” and what I want to say is, “You can help me by not making me responsible for one more decision right now.” 😉
You want to help me? Wash the rugs where the dog just threw up—Abby needs her medicine picked up before closing and I have 10 minutes to get there. Take the cookies out of the oven when the timer goes off. “Help” is conceptual. I’m a bit of a pain making people assign meaning and behavior to their words. Be specific. Neurotic language picking is my tic and it is obnoxious, but there you have it. Ask my girls how many times I say things like, “What did you mean by that word? You feel sick. What does “sick” mean? Are you ‘I need a nap sick,’ or ‘buy the coffin sick?’” An example: My friends quickly learned a way to help was to tell me when they were going to the grocery store and offer to pick up items for me. That was helpful because it was concrete.
Being remembered or noticed is everything. Someone sending a text or an email to say I’m in their thoughts. I crave kindness like I crave water in the desert. I remember once Abby and I went into the busy Portland ice cream shop Salt & Straw after a doctor’s appointment—it had been an utter disaster of a day. The scooper handed us our cones, we went to pay and found out that the scooper had “given” us our ice cream. The owners let them offer free scoops from time to time. I started to cry I was so overwhelmed with feels.
What people like me need is to be seen—to have what we do seen as valid and real. It is a job without thank yous or raises or guaranteed vacation days. Sit beside me and witness my truth. See ME. Not just Abby’s spokesperson. Abby’s PR team. Abby’s home nurse. Abby’s all-purpose fill in the blank doer of all tasks she cannot do. That little acknowledgement goes a long way for carers.