The Reluctant Caregiver: How a Gen Xer overcame strained relationships and rural healthcare (Part 1)

Joy Johnston did not look forward to the time in her life when her parents, living on the other side of the country, began needing care. But she persevered, providing care for both of her parents, and is now an advocate for other caregivers. Her memoir, The Reluctant Caregiver: Missives from  the Caregiving Minefields, provides a fresh perspective on how to provide care even if you’re not a natural caregiver. Joy also runs The Memories Project, which started out as a tribute to her father and now is a advocacy platform for those with Alzheimer's. As a Gen Xer, she went through the caregiving journey a bit earlier than her peers, and her perspective will be valuable for the former latchkey-kids of the ‘80s. You can learn more about Joy and her work on her website. 

Below is the first part of a conversation we had about her caregiving experiences. It has been edited for length and clarity.

 

Ben: I'm hoping you can start at the beginning, before caregiving became such an important part of your life. What were you doing and what was that like when things changed?

Joy: I'm a Gen Xer, but I did have parents who were older than my peers and were actually old enough to be my grandparents. So I think I was a little bit more aware that I was going to be facing caregiving sooner than my friends and coworkers. I was in the middle of my career and it was very busy and very fast paced. So my focus was mainly on my career. My parents retired to New Mexico and I'm in Atlanta. So I knew eventually that this storm of their aging is sitting out there and it's eventually going to come to shore. I was in my 30s at the time, so I was focused on myself. It was just one of those things where I didn't have a lot of time to stop and think about it.

Ben: What was it like when you first heard about your father's diagnosis?

Joy: With dementia, it's not necessarily one moment; it comes in slowly, in waves. There’s often a defining moment at some point where you realize, “wow, this is something you have to recognize as a family.” And that did happen in my father's case. But early on, I would talk to my mom weekly and she would tell me things like he had  a really bad nightmare and he had trouble waking up from it. She told me about some issues he had with money like struggling to make the correct change and thinking that people were trying to rip him off. Things like that. And then his driving skills deteriorated. So a lot of those things ended up finally culminating in a tough moment. My father walked into a convenience store, picked up a couple of burritos, and tried to walk out without paying for them. Of course, my father never would have done that in his right mind. And, the clerk called him out on it. Fortunately, the police were not involved, and they called my mother instead, because it was such a small town. But that was the defining moment for me. That's when I knew my dad had Alzheimer's or another form of dementia and that this was a real thing and that we were going to have to address it much more than we had been up to that point.

Ben: How old was he when this all started?

Joy: He had symptoms for about four years, so he was in his mid-70s. It's actually going to be the 10th anniversary of his death this year. I can't believe it's been 10 years, but he died when he was 79. 

Ben: What was  that time like for your mom?

Joy: It was very difficult. I'm an only child, so I was the only source, the only outlet for her frustration, for her fears. And I could tell that she was tired and sometimes, would end up taking it out on me. Sometimes I wasn't the most sympathetic source because I was dealing with my own stressors. I was in the middle of a fast-paced career as the 2008 economy cratered. And I just bought a house. My mortgage was under water. So I was dealing with a lot of financial stress on my own. And sometimes her weekly check-in calls were just a litany of complaints. And sometimes I wasn't the most sympathetic ear. And I do regret that because she was dealing with a lot and she had no one else to turn to. They were pretty isolated in their area. She outlived most of her relatives and her relatives lived in Tennessee, so they didn't know anyone else in New Mexico. So I was their only outlet. And so yes, it was a real struggle, a real strain. And I know she got a lot of it from me because she was an optimist; so, she liked to put a positive spin on everything. So what I often had to do was parse out reality versus the rosy scenario that my mom was painting for me.

Ben: At what point did you realize that this diagnosis was going to significantly alter your life?

Joy: I think it really built up to the moment where my father ended up having to be hospitalized. He had to have emergency surgery for gallstones or kidney stones. And that was the defining moment because up to that point, my mother was still caring for him at home with a limited amount of home health care. There had been an incident where he became physically violent with her. It happened when I was visiting, but I wasn’t present for the moment of the violence. She was getting him ready for bed. That's a time dementia caregivers know about — it can be a real struggle to try to get their loved ones ready for bed. And he just socked her in the jaw and said that he was shadow boxing and then she got in the way. And that moment, of course, floored me. But I didn't know what I was going to be able to do because I knew my mother would not want my father in a facility. And frankly, there were no local facilities available. So I was just kind of in this holding pattern. But then my father actually had to go into the hospital and have emergency surgery. When someone with dementia goes into the hospital, they usually tend to struggle with recovery. You know why? Because they struggle to follow the guidelines for recovery.

So my father ended up doing poorly in the hospital. He ended up losing the ability to walk and that triggered a mandate from the hospital. They couldn't release him home because my parents’ condo had stairs. I hope this can be a lesson to any other potential caregivers out there. You need to make sure that you have the ability to bring your loved one home. There wasn’t a place at my parents' home to add a wheelchair ramp or anything else that could accommodate him. So he got sent to a rehab center, which in turn wanted to move him because of his dementia. They didn't have the staffing to manage his care. So then he got shuttled an hour and a half away from my mother to a community in Roswell that was the closest facility with an open bed. And that was a huge burden on my mother to try to go visit him because she didn't drive. So she had to take a bus an hour and a half each way to visit my father. And that ended up being a huge physical and mental burden for her.

Ben: What was your relationship like at this time with your parents?

Joy: I was definitely more of a long-distance caregiver. I didn't get home as much as I should have. And there were times, frankly, when I avoided going home because it was stressful. My parents were wonderful people, but I didn't necessarily have too close a relationship with them. As a Gen Xer, I think we're more open about relationship issues, especially at the parental and child level. I avoided going home and especially on the holidays, it was mainly because of the expense. If they had been closer, then yes, it definitely would have been much easier for me to see them. So I mainly was hearing about incidents via the phone. When my dad did end up moving to the memory-care center, I visited him there. And that, of course, I write about in my book, because that was  a really tough moment.

Ben: What was life like for your mom at this point when she's now all alone? Did she have enough mental bandwidth to care for herself while being so focused on your father's care? 

Joy: No, and that is a really important point. Sometimes my mother is pretty Pollyannish. Her attitude was a detriment, especially when it came to my father's care and end-of-life decisions. Her positive attitude helped her maintain a level of sanity while she was dealing with my father. Being apart from my father and having this huge travel burden back and forth from her home to memory care was not easy. It was a very lonely, isolating time for her. I just wish she had a better support system around her. To be fair, I encouraged her to socialize and try and live a normal life. There's a senior center near her, and there  were local resources, but my mother didn't want to use them. So, you can only offer so much, you can only push them so much. My father ended up passing away at the end of 2011, five days before Christmas. And six months later, my mother was diagnosed with stage-three colon cancer.

So we know that colon cancer is typically slow moving. She downplayed symptoms at first. While my father was alive and she was caring for him, she just pushed the symptoms aside, ignoring them. Caring for my father had a direct effect on her physical health, and I suspect that the stress could have played a role. Cancer is caused by many things, but there is some belief that stress can certainly be a factor. And I definitely think that the chronic stress that she's suffered for several years could have played a role because colon cancer doesn't run in our family. My mother ate almost a vegetarian diet; she didn't smoke and she wasn't overweight. For caregivers, it's so important to make sure you take care of yourself and pay attention to any warning signs, because if you can't take care of yourself, you're not going to be able to take care of your loved ones.

Ben: What was your father's experience like in memory care? And what was your experience caring for him while he now has a professional team supporting him?

Joy: It was hard to know what he was experiencing. He obviously was experiencing some sense of disorientation. He would mention going home, which a lot of people with dementia talk about, but we're not sure what is home to them anymore. Home could have been his childhood home of Belfast. Home could have been New York City, where he immigrated to America. It could have been L.A. in the 1960s when he moved out there. So we don't know what home is exactly. They want to go home. My father didn't do well in memory care. I'm not surprised because he was a very private person. The idea of communal living was not his thing at all. I remember so clearly when he moved in, one of the staff asked me what his hobbies are. And my father's only hobby was reading, and of course, with dementia, you lose that ability to read. He didn't like to do jigsaw puzzles or play games or do crafts or any of the common things that they do in the care centers.

He loved to walk and he loved to read. Those were his  two hobbies. And so that was just unfortunate and nothing that they could control. The care center itself wasn't bad from what I could see. However, it did suffer from common issues like not enough staffing. My father got in a couple of tussles with residents, so there just wasn't enough supervision. They didn't have enough staffing to properly observe the residents.

I felt, the times that I visited, he was always a bit unsettled. He would wander a lot. He actually fell a few times and had to be taken to the emergency room. I can't imagine how disorienting that was to be dropped off at the emergency room and then left alone to be tended to. I don't know how much of my father was there, but he did always seem disoriented. He did enjoy the food. So that was good. He did have a good appetite most of the time that he was there until the very end. It wasn't the worst facility in the world, but I did get to see what a lot of people experienced and I guess I got to see the shortcomings of his community. That's one of the reasons why I'm an advocate now is to advocate for better staffing, better quality of care, and better care within dementia communities.

Ben: What was caregiving like for your mom?

Joy: Caring for my mother was definitely not something I was expecting. It's one thing to be a long-distance  caregiver. It's another thing to be thrown headfirst into being a hands-on primary caregiver. And my mother and I were like oil and water — totally different personalities. It was a challenge. Definitely the hardest job I've ever had. And that's another reason why I became a caregiver advocate, not just for family caregivers, but also for our paid caregivers. It's such a thankless job. They don't get nearly enough credit. They don't get nearly enough pay and support and benefits. And so I joined forces with organizations that support care workers like Caring Across Generations because the care workers  were wonderful to my mother and I wouldn't have been able to get through the process without their help. So yes, it was overwhelming. I basically had to quit my job, leave my home in Atlanta, and go care for my mother for about six months in New Mexico. And I'm glad I did it because being hands-on really made a difference while she was recovering in the hospital and in the rehab center before she actually came home. I think if I hadn't been present, there could have been some serious issues with her care, and I don't think she would have recovered as well as she did.

Ben: Did you move into her home?

Joy: Yes. She came home after spending two months in a rehab center in  Roswell, where my father stayed, though not in the same facility. . So that summer I spent living out of hotel rooms in Roswell, New Mexico, where it's about 110 degrees every day. And then when she did come home around September of that year, I was living with her in her condo.

Ben: You describe yourself as a reluctant caregiver. You've shared a bit already around this topic. But I'm curious, what does that term mean to you? How is caregiving different for a "reluctant caregiver"?  

Joy: When I was writing the book and I was testing some of the essays and some title options, I got some pushback from my writing group, saying it was too negative of a way to describe how I cared for my parents. But "reluctant" to me, that's the honest description. I was reluctant for the physical task of caregiving. I've never considered myself the nursing type. There are some people who gravitate to caring and helping others tend their wounds and that's just not me. Some people just are really good at that. And other people just aren't the most enthusiastic volunteers for this kind of stuff; it could be a mix of squeamishness and germophobia. They might just be uncomfortable dealing with the very physical, intimate side of caregiving. And I dealt with it all, and it did give me a better understanding of myself — that I was stronger than I thought I was and that I could do more and do things that I never thought I'd be able to do. I tended to my mom's colostomy and emptying her bags, which was one of the most difficult tasks that I undertook. I wasn't reluctant in the act of caring, but that doesn't mean I was excited to be there doing all of the grueling tasks of a caregiver.

I spent a lot of time learning how to be a caregiver, because of course, I wasn't prepping for this role. I thank all of the people on YouTube who were so gracious to demonstrate the right way, in particular to deal with colostomy bags and other caregiving skills. I basically got my education on YouTube. But yes, I was reluctant from the physical standpoint of actually being a hands-on caregiver because I was afraid of failing, because I felt like it was so out of my league. And then, yes, there were underlying issues with my parents and how we hadn't been that close. And so there was a lot of guilt and things left unsaid and not addressed. There was an emotional and physical component to my reluctance. I wanted to put that out there because I know that there are other people who feel the same way. And as a relatively younger caregiver, I think our generation has a little bit more freedom to express any kind of reluctance when it comes to dealing with family members. For those older than me, it seems that there is that duty, to care for your relatives, and that duty should be undertaken stoically at the least, but usually with enthusiasm and compassion no matter how you might feel. So I wanted to give people my perspective; I wanted them to not feel as guilty, perhaps as I did, and it's okay to be a reluctant caregiver. That doesn't mean that your loved one doesn't deserve good care, and you need to decide whether you can provide that care or you feel you need to get outside help.

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