“That part is something that the roles reverse, and it’s not ‘til you’re in a position that you really understand that the roles do reverse then again…I wouldn't have it any other way.”
It’s after school, and my brother and I are still in our uniforms when we enter Ms. Tricia’s house. She sets out a pitcher of water and tea bags by the back door. Sunlight slowly turns the water into tea, and Ms. Tricia gives us lemonade. In living, her father sits watching TV. This is one of the days when we do get to see him in the house.
He was pretty active until the age of eighty was even able to drive himself around town until then. As he grew older, and movement became more difficult, Ms. Tricia and the rest of her family transformed the house, making it more handicap accessible. They installed a ramp that led to the front door, grab bars in the bathroom, a bench in the bathtub that suction cupped to the walls, and a lift chair to help him sit up. Even though her father away five years ago, the house still stands this way.
It soon became clear that it was going to be more difficult to care for him. In addition, his dementia was started to worsen and he was starting to have heart problems. They also worried about him falling. She and her sister knew that they wouldn't be able to carry him or help him shower. At that point, knowing that it would take more than two people to take care of him, they sought help from a nursing home. The transition from home to the nursing home was relatively easy. It helped that his family visited him every day. “He would always see us and eat meals or bring stuff to him so he always saw us so he would say ‘So how much do I have to pay when I go for supper?’ because he thought he was at the hotel and restaurant,” she told me, laughing. To him, the only difference in the living situation was where he slept.
While taking care of her father was still difficult, she says that it was easier than it could have been. Part of the reason why was that it wasn’t the first time she and her siblings had taken care of someone. About twenty years prior, her mother passed away from ovarian cancer.
Her mother had known that there were some problems with her ovaries, so she went in for surgery. When the surgeon found that she had ovarian cancer, he immediately closed her up and sent her and the family to meet with an oncologist. They scheduled her to start treatment at a clinic the next town over. From that time onward, Tricia stated, her mother remained pretty solemn. She could see this from how her mother instructed her and her siblings how to care for her. “I truly think…that she just decided she did not want to have to be a burden on anybody. She did not ever tell us that, but I think from then on there was a change in her and she just was like ‘I’m not going to go through this’ and I think she kind of gave up a little bit.’” No one thought that she was a burden. The life changes were sudden, and everyone was caught unprepared. But everyone did their best to take care of the mother, making sure that she was comfortable up until the end.
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Her mother was clearly not ready to leave the world, and one of these reasons was Michelle. After Ms. Tricia got divorced, she and her daughter Michelle moved back in with Tricia’s parents, who happily opened their doors to them. Michelle’s presence at home brought joy to both the grandparents. Once Ms. Tricia’s mother was diagnosed with cancer, this presence became much more meaningful. She became very worried that she wouldn't be able to watch Michelle grow up. When Michelle reached first grade, she passed away. So it was her grandfather who was able to bond with her most.
In one of my psychology classes, we talked about Erikson’s theory of development, which states that people of different ages deal with different conflicts. For example, Ms. Tricia’s father was probably dealing with the conflict of Ego Integrity vs. Despair. Had he lived his life successfully? What was left for him to do in his life? Ms. Tricia firmly believes that Michelle helped alleviate any existential worries he had. “I think having myself and Michelle home for my dad it gave him a purpose…because we were around and there was always activity, you know, taking Michelle to school and a normal routine” The two bonded over meals and television time together. By being able to bond with his granddaughter and watch her grow up, Ms. Tricia’s dad believed that he was spending the last years of his life well.
Likewise, Michelle was a teenager and most likely dealt with the conflict of Identity and Role Confusion, trying to understand who she was. The transgenerational exchange of knowledge between her and her grandfather helped with this. For example, Michelle inherited her grandfather’s vocabulary, calling movies “shows” and couches “davenports” to her friends. Likewise, Michelle helped her grandfather keep up with currents events, telling him about what is happening in the world right now. Bonding with her grandfather probably helped Michelle understand who she is in her own generation and outside of it. It wasn't until Michelle was in college did her grandpa pass away.
As someone who was not able to grow up with my grandparents, I do feel as though some part of my development has been missing. I actually did not know my own grandfather, though people tell me that I have his personality and share similar interests with him. I’d like to think that, if I knew him, there would have been some parts of myself that he could have helped me understand. I think that this goes to show that the relationship between generations, particularly between grandparents and their grandchildren, is crucial to the development of both. Keeping children and younger generations around grandparents at the end of life, and vice versa.
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For the most part, both parents were pretty active and involved in their own care. However, there would be times in which both parents would ask the children for help. The mother insisted that her children come into the consultation room with her. Ms. Tricia recalled, “My mom said to me ‘I want you to go in because in case I don't think of something to ask you could be there.’” Even though she carried a notebook with all of the questions she had for the doctor, she still wanted that support. He also insisted that the children come into the consultation room. They would only leave if the doctor needed to do a procedure or test on him. The father tried to be involved in his own care through. However, he was hesitant to ask them during appointments. He was hard of hearing and was shy to ask the doctor to repeat things. Ms. Tricia worked on getting him into the habit of also writing his questions down.
Tricia also told me about the weekly routine she had of organizing medications for her father. They would sit together and arrange the pills in their respective slots: some medications set aside for the mornings, some for the afternoons, and some for the evenings. Both parents knew when to take their medications and understood why. They followed their doctors’ orders and tried to stay healthy.
Nonetheless, Tricia was very aware of the shift in care, and it was one of the challenges she had in caring for both her parents. It was the role reversal of parent and child. For many people, this reversal comes unexpectedly. For Ms. Tricia, when her mother was diagnosed with cancer, this reversal came a lot sooner than she expected. But, in the end, she came to accept her role and was happy to have cared for her parents the way she did. When she talked about her father’s care, she recalled to me the times and all the diapers that her dad probably had to change for all six children. “Katrina, I wouldn't have it any other way…because I think that’s the least I could do. My dad had dignity.” She feels a strong sense of duty due to her family structure and how easily her family took her in and supported her after the divorce. Ms. Tricia was happy to help her father but was also very mindful of her limits and abilities. That’s why, when she realized that she wouldn’t be able to fully take care of him, anymore, she sought help from the nursing home. But even then, she made sure that her father was well-accompanied and happy.
***
Of course, she didn’t do all of this alone. Her most immediate support was her six siblings, all of whom contributed to the care of both parents, even if some of them couldn't be there in person. It was mainly her and her sister that were in town and able to care for the father directly. For them, doctor’s appointments were always followed by conference calls. “Oh yeah, we always joke because, when someone happens to my dad or has an appointment, I would have to call all of the siblings.” The sister who lived in town was a nurse, who would work third shifts so she could take him to doctor’s appointments during the day. Ms. Tricia took care of their father all of the other times. For any of the expenses that were not covered by her dad’s insurance, she was able to get help from her siblings and outside support. It also helped that her sister Mary was a nurse, as being a doctor had helped my mom take care of her mom.
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Between those fifteen years between caring for the mother and caring for the father, end-of-life care went through many changes, the biggest being the growing number of resources available to people and their families. For example, Ms. talked about services that can have someone come in and take care of your loved one for a couple of hours. In the meantime, you can run errands or take care of other matters. Of course, there were also the home health services that the hospital told them about. There are also daycare-like services where a loved one can be dropped off to spend the day with other people. Nowadays, she says, people are pretty good about finding and giving you information about such resources.
She was also happy with hospice care. Going into hospice, Tricia thought that the medical staff had already predicted a time of death They reassured her that it wasn't the case. The goal of hospice is to increase the quality of life during the last months or days of a person’s life, and the staff was there to help them with anything that they needed. My dad’s story goes into more detail about what hospice can provide.
The discussion about resources between Ms. Tricia and me was very rich. Not only had I not considered how much healthcare has changed, but I hadn’t thought about how it is still changing. She told me that by the time I am her age, end-of-life care may look very different than it does today. For example, a lot of the installations that she bought for her parents can now be ordered online and shipped to the house. When taking care of her dad, there was a service that delivered medication to the house. Recently, she had heard that there are online pharmacies now that can send medications to your house. My dad told me that this service is starting to become more common, particularly for the elderly who don’t really have any changes in their prescriptions medication. Not only will there be changes in end-of-life care, but there will be changes in medicine. With much hope, she told me that maybe someday there will be treatments and cures for a lot of the diseases people suffer from. We briefly talked about how she hopes that the government and society can support caregivers more because not everyone has siblings or support like she had.
One of the pieces of advice that Tricia offers is to seek out support, either from familiar people or a support group. She emphasized the importance of meeting and speaking with someone who has gone through or is going through the same experience. Even with small things like errands, she encouraged people to accept that help. Every caregiver needs breaks, resources, and support. These may be found in hospitals, hospices, churches, and other community-based centers.
***
If there is anything that I learned from talking with Ms. Tricia, it is that time makes a difference. For Ms. Tricia, the caregiver role came to her early and unexpectedly because of her mother’s cancer. In some ways, this made the role of caregiver easier the second time when she took care of her father. Because of time, relationships between generations can help people cope with the end of life. Because of time, there comes a point when many children find themselves taking the parent role for their own parents. Because of time, there are more resources available for patients and caregivers.
Before we ended our conversation, Ms. Tricia told me about how happy she was that end-of-life care is being talked about more. Back when her mother was diagnosed, there was barely any discussion about this kind of care. But now, she is starting to see commercials about it, such as one that shows a couple getting a loan in order to include a parent/grandparent into their family.
One of the reasons why I started this project was to start thinking about what it would be like to be a caregiver, as I most likely will be when my parents grow older. It’s something that’s been hinted at to me very subtly, such as my mom half-jokingly and half seriously asking me not to put her in a nursing home if possible. In the grand scheme of things, end-of-life care is something that we don’t often think about until we either become the cared for or the caregivers. If it weren’t for my background, and the people that are close to me, I probably wouldn't be thinking about it as much as I do now.