Caring for a spouse with frontotemporal dementia - Donna's Story.m4v
What Caring for a Spouse With a Mental Illness Taught Me About Marriage
Mark and Giulia Lukach, now 34, were a young couple who met at 18, married at 24, and were convinced that they knew everything about each other — and their future. Their plan was to save for a house, have kids, and enjoy a life filled with friends, family, and plenty of trips to Giulia's family home in Italy. But then, at age 27, Giulia began to have delusions that required hospitalization. As expected, the hospitalization was grueling on both. But as Giulia got better, the couple was surprised and devastated by how mental illness continued to affect their marriage. Here, Mark Lukach, author of the new memoir(Harper Wave, out now) shares how the San Francisco-area couple got through three hospitalizations as a team of two.
I stood, dripping sweat in the gym lobby as an attendant ran frantically past me.
"There's a woman in the locker room who's screaming that she's dead! She needs help! Someone call 911!" the attendant said breathlessly to the woman behind the desk, whose mouth dropped into a round O of horror. My heart clenched; my blood ran cold.
I stepped up to the desk. "That's my wife," I said. "Let me go in and talk to her. Please. You don't need to call 911. Seriously."
I couldn't imagine what the gym employees must have thought as they watched me race to the women's locker room. After all, just an hour before, Giulia and I had walked in looking like a young, healthy couple enjoying a kid-free hour to work out. How could they have known about the depression, fear, and delusions lurking below the surface?
I went and got Giulia, persuading her to take my hand and head to the car. Once she saw me, she left willingly, and it only took a few minutes for us to walk out. Giulia was on the precipice of a psychotic break — something the two of us had become familiar with over the previous five years. While we may have looked healthy, the gym was a planned diversion. Giulia had been unwell for the past few weeks, agitated and unable to sleep. We had been calling her psychiatrist multiple times a day, who was working to try to adjust her medication. Our hope was that Giulia would be able to avoid the hospital. But the delusions continued, and, a week later, Giulia was admitted, where she stayed for 13 days. That — the hospital stays, the pills, the daily phone calls to doctors — was the new "normal" of our married life.
My wife, Giulia, is beautiful, smart, and funny. She's also bipolar and has had several stints in psychiatric hospitals, including the third and most recent one, 2 1/2 years ago, following her psychotic break at the gym. She's had delusions the devil is after her and she's struggled with suicidal ideation. We're optimistic but we're also realistic — even though she has a great team of psychiatrists behind her, we know that relapses are common.
The reasons for relapses are mysterious: For example, she was on all her medications before the last hospitalization; her doctor thinks it's because her body began metabolizing the medication differently. Doctors say this happens frequently; it's a constant juggle to make sure the medications are working the way they should be. But we also know that we're in this together.
That's something a lot of people — like, I'm sure, the gym attendants watching me help Giulia out of the locker room as she was telling me everyone around us was dead — don't realize. They see Giulia and assume she's "sick," while I'm "healthy," but the truth is, her bipolar disorder has affected both of us — and nearly caused our marriage to crumble.
We got married in 2004, six years after meeting in college at age 18. Together, we felt unstoppable: We had just settled down in San Francisco, where I taught at a high school and Giulia worked as a marketing executive. We loved hiking, traveling, and spending time with friends.
But then, when we were 27, things started to shift. Giulia had gotten a new job in her field — online marketing — but it soon became clear that she was dealing with more than typical new job stress. For the first month, she would spend hours composing an email and struggle to fall asleep. By four weeks in, she wasn't sleeping at all. Five weeks in, she began having delusions. Six weeks from the day she started her job, she was admitted to the hospital for the first time.
Giulia had never had any mental-health issues before, so it was incredibly shocking for both of us. It also perplexed the doctors; at the beginning of her hospital stay, they spent a lot of time arguing over a proper diagnosis. In the hospital, they tentatively settled on schizophrenia. But they also made it clear they weren't entirely confident that was the correct diagnosis — and that it was very possible it was a one-off psychotic break that didn't have a simple diagnosis and was a collection of issues, including depression.
Here I was, supposed to be strong for my wife, but I was racked by fear and exhausted.
I was surprised by how hard the hospitalization was on me. Here I was, supposed to be strong for my wife, but I was racked by fear and exhausted. When she was sent home from the hospital after a few weeks, her delusions had ebbed, but her depression was front and center. I couldn't leave the house, because I was worried about what she might do to herself; she almost overdosed on her medication — Lexapro and Risperdal, both of which she no longer takes — the one time I left for an afternoon to go surfing with a buddy (she ended up spitting out the pills, so she didn't swallow any of them, but it was still terrifying).
Eventually, with nine months of intensive outpatient therapy, the right combination of medication, and luck, Giulia began to feel better and healthy. But even though it seemed like we were out of the woods, we just couldn't connect. Giulia wanted get back to our old life and routines; I felt like I had just run a marathon and needed some major TLC.
Mark and Giulia on a trip to Dublin.
One time, about 10 months after her first hospitalization, we were cleaning up after dinner, and Giulia made a joke about how I should do the dishes. In the past, we had always had these play fights in which we compared how much housework we had done. But this time, I snapped. I felt like I had done everything in the past year for her, and now, I wanted someone to take over. I was emotionally needy and felt bad for feeling that way — after all, Giulia had literally been fighting for her life in the hospital.
But that's the thing many people don't realize: Caretakers have a really tough time balancing the needs of their spouse with their own needs. Eventually, with the help of some pretty intensive therapy of my own, we were able to find a way to connect. It took about a year to regain footing. We tried couples' therapy, but we had been through such a unique experience — it was hard for us to feel like we were getting anywhere, and I think we both knew we weren't ready to dig down deep into the work. At that point, neither of us were working due to Giulia's illness, so we took the money we'd been saving to buy a house, left town, and took off four months to travel — we went to Africa and Ireland — which gave us new experiences to anchor us.
We even started talking about having a family, looping in Giulia's psychiatrists to make sure that we could do it as safely as possible, medication-wise. The pregnancy went smoothly — her psychiatrist was monitoring her, and she was on Prozac — and we felt closer to each other than ever. For five months after Jonas was born, everything was perfect. But then, Giulia went back to work, and the delusions returned. We have theories on why the relapse happened — the stress of returning to work, the combination of medication (although she was taking Prozac, she had gone off lithium in order to breastfeed) — but we don't know for sure.
That was when I felt like our world had been shattered. The first time Giulia got sick was jarring. But we had assumed we had beat the odds, especially as the months without symptoms piled up. Even the doctors had optimistically hoped that Giulia's psychotic break had been a one-time thing. They didn't think it would come back. So it was really shattering when we realized that her initial illness hadn't just been a fluke. It was here to stay. This time, doctors came up with a new diagnosis: bipolar disorder. When we heard that, we knew this was something both of us would have to live with for the rest of our lives.
After the second hospitalization, we made a plan: We figured out what we wanted to do if a third hospitalization happened. The plan we made while Giulia was still healthy was multi-tiered; we discussed which medication she would be open to taking in the event she needed to be hospitalized, how both our families would be involved, how to handle Jonas in the event of a relapse, and how to handle Giulia's job.
The first time was so shocking that I was thrust into making big life decisions for Giulia — I had to quit her job on her behalf. The second time, I still found myself unsure of what Giulia would want, and Giulia was in no position to make decisions regarding medication, therapy, or hospitalization on her own. But the third time — the gym breakdown — we were prepared.
Jonas was only 2 years old, so it was difficult for both of us to know how he was taking Giulia's illness. He did act a bit more cautious and afraid as Giulia began to get delusional, which was why I felt guilty and relieved when Giulia was hospitalized. Of course, I didn't want her to go back there, but I also liked the fact that Jonas was distanced from the illness — he wasn't able to visit her according to hospital rules, and our family and friends rallied around us to make sure that he had as normal a childhood as possible during that time. But it was really hard. I called his pediatrician and asked what to do, and she told me, in no uncertain terms, that if I had to choose between Giulia's comfort and Jonas's, I needed to choose Jonas's. Luckily, Giulia realized that too. She suggested Jonas stay with my parents for the first few days when she arrived home from the hospital — she wanted to be sure she was ready to parent.
The more we talk about it, the less power it has over us and our marriage.
Don't get me wrong: The experience was horrible. But being able to talk about bipolar disorder and figure out a plan together has helped us learn to live with it as our reality. And the more we talk about it, the less power it has over us and our marriage. Our friends and family have been incredibly supportive of us; the hard part has been the unspoken expectations and resentments that can pile up between us when we're navigating an illness episode. After the first one, especially when I began to write about its effect on me, we had to have some really hard talks. We weren't proud of some of our behavior — in the periods between hospitalizations, we definitely both said things we wished we could have taken back. But at the same time, talking through our experiences let us share our pain, resentment, and tension — and realize that we're in this together and have an unshakeable bond.
While it's been three years since her last hospitalization, we know it could happen at any time — and despite getting enough sleep, limiting stress, taking medication and regularly seeing a psychiatrist, there's very little Giulia can do to prevent it. So we've made peace with that uncertainty, and know that when, and if, it happens, we'll be able to get through it — together.
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