Table 2.

Themes and Subthemes with Illustrative Quotations

Themes and subthemes	Illustrative quotes
1. Caregiver role
Providing emotional, physical, and economic support	“In my role as companion and wife and because of the great love that I have for him, I am beside him. Supporting him in all areas even economically when it is possible.” “From working to earn money to maintaining the house to preparing the food…I have to do things myself.” “Moving him around, everything, I would give him his bath and take him to the bathroom. I would sit him down and get him up. Everything.”
Advocacy and care navigation	“I’m trying to find a solution that will help us with my dad so that he can receive treatment without having to suffer. Its difficult seeing him.” “The doctors had just gotten left the room. I stayed there with him because he had oxygen and he was restless and kept insisting he wanted to leave. Then he made a movement like he was going to throw up and that’s when I yelled for the doctors to come over. They ran over and quickly put a mask on him. I was rushed out of the room.” “My children and I are asking about kidney transplantation. My children say, ‘I’m willing to donate a kidney to my dad so he does not have to do that anymore” “I think your immigration status should not be the reason you are treated differently. You are dealing with a person’s life. This disease is not like a cold we can treat at home. This is not minor. I know there aren’t that many resources or aid within the state.”
2. Caregiver burden
Anxiety related to patient and personal death	“The fear I have is that we may lose him. That’s what we fear. It’s what concerns us most. It’s what my daughter says will happen sooner or later. What if something happens while he’s asleep, or while here at the hospital. That’s our worse fear” “There have been nights that I have not slept. I wake up and I touch him to make sure he is breathing. This is my fear.” “I’m afraid that if I died, I would not be able to provide for her. I sometimes think I will not be able to continue. That I’ll get sick.” “I fear leaving my wife alone; not being with her anymore. I do not know what would happen to her if I wasn’t with her. I’m talking about death.” “I’m afraid. I tell my mom every week when we go to the hospital that I do not know how things will go. We’ve seen people on dialysis that are okay and then suddenly things get complicated.” “I do not work because I want to be with my husband to prevent him from dying. I do not want my husband to pass away. That would be too hard for me. I feel terrible during dialysis but I do not say anything to him. I look at him to see if I can detect any symptoms.” “My daughter still has one more year left to graduate [crying] and when she saw my dad so sick, she told him to be strong so that he can see her graduate. I hope that happens. She’ll be the first to graduate. It’s hard because we would not want him to be gone.”
Emotional exhaustion and personal illness	“I’m most stressed when she starts feeling bad. Sometimes we go to the hospital in the middle of the night” “I’m also no doing good. I have pre-diabetes too. I never stop. Sometimes I do not even eat. We have to take care of him. When I get angry with him, I ask my son to take care of him so that I can rest. Sometimes I feel tired. Sometimes I get angry but not enough to leave him. He cannot walk and his hand does not’ work. Life is very sad for us.” “I get tired. I get stressed. My neck and shoulder hurt. I lie down and I cannot even sleep because I’ll be having to wake up to take my dad to the hospital again. One time he had a lot of water in his lungs in addition to pneumonia. They had to put him in the medical intensive care unit for 2–3 days. It was difficult. I think I’ve lost about 15 lbs.” “This week was very stressful for me and now I’m feeling it because I have high blood pressure, my neck hurts a lot.” “I drag my leg. They say it’s a nerve sciatica problem in my leg. I tell her, ‘I’m old, I cannot do this’ but then I think, if others can do this, why cannot I? I can do it too.” “I cannot leave home without thinking about my mother. I cannot live my life. I cannot accept a friend in my life unless that person accepts my mom and her illness because my mom is my priority. It affects everything. Caring for her and always being aware of her. Sometimes it’s really sad because I feel helpless. It’s really stressful to see your mom go through this.”
Struggle with finances	“I wasn’t bothered about anything before he was diagnosed with kidney failure. Never. He took care of everything. He had two jobs and paid the rent. My children were at school. After he was diagnosed with kidney failure, my daughter had to drop out of school to help us. Now he is sick and it has been two years since everything changed. Sometimes my daughter has money and she gives me money for medicine, for and electricity. Every eight days I make tamales to help pay for the medicine.” “He says, ‘how are we going to do this? To pay for everything. The car that breaks down.’ I tell him, ‘do not worry, we will take care of it. Do not you worry.’ is what we always tell him because if we worry him, he will get sicker and we cannot do that.” “My job is hard and I do not earn much. Last week I earned $400 and I have to stretch it out to pay for everything for the month like food, electricity, and everything. I do not know how I’m going to manage now but if God helps me, perhaps I will be able to pay my rent and have money to eat. What can I do accept push forward. There’s no other thing to do.” “There was one time that I was very hungry and I had to beg a woman.” “We collect cans. We leave at 4 a.m. to collect the cans. He uses a lamp that he hangs on his body. We get the cans, crush them, and then come back home and I fix lunch or dinner. I started selling tamales too. One time, the police was about to take me with my icebox full of tamales. I told them not to take me and they left me but said I could not sell tamales anymore.”
Self-care	“You learn a lot about how to change your eating behavior and you become spirituality because you see this illness and it’s terrible. It was hard but I learned that you have to take better care of yourself.” “I was having headaches, and body pain but I went to my Zumba class because I had stopped going. This was the remedy for me. I feel bad leaving him alone but it is only one hour.” “Sometimes we fight over nonsense but it’s not worth it. Its not worth it to lose time on nonsense or arguments. We need to value taking care of yourself, that.”
Redefining relationship	“I never thought I would live this way. Taking care of him. I am older than he is. A few years older, so I never thought that I would be the one helping him. I thought I would need more help from him. He is the one that needs help from us.” “This did not happen in the beginning but over time this affected our relationship. I like to be clear with people and tell them that my priority is my mom so I do not make other people waste their time. That has been the biggest change.”
3. Unpredictable emergency-only hemodialysis
Acute episodes of illness that trigger emergency	“He was so sick that he was unconscious. We called the paramedics and they said that his potassium was too high and his life was at risk. He was forgetting everything and not thinking well in the hospital. He said he was going to his grave.” “My mom get nauseated, dizzy, and swollen. She rests so she can feel better. The first time she had an emergency visit, she was bleeding badly. Around 3 in the morning, we heard a loud sound. She told us earlier in the day that she could not sleep because she could not breathe. She sat in bed most of the night and finally fell asleep and that’s when she fell down. She lost a lot of blood. Her face and hands were very pale.” “I have taken my mom to the hospital several times when she was minutes away from dying. Once, I had to get her out of the house in my arms.” “He was unconscious. He did not know who I was. That was one of the worst days. That day he said he felt dizzy and he needed help. He fainted and fell out of bed. My son called an ambulance and they told us at the hospital that it had affected his heart.” “He said ‘I feel really sick and I need you to come and take me to the hospital.’ I noticed that he wasn’t breathing well and I asked my cousin to bring him to where I work. My dad was really sick and I had to call an ambulance because they said that he almost had a heart attack.” “They took him straight from the emergency department to the intensive care unit. His heart rhythm changes and they have to do something quickly when he needs dialysis”
Stress when patient is denied dialysis	“They did not admit us because his potassium level was not high enough even though his urea toxin level was high. The nurse told me they could not admit him. Then they wanted to do a flu test and he did not want it. The nurse said, ‘if you do not want the flu test then we will send you home and if you go home, you might die.’ He would not be admitted for dialysis.” “Yesterday I brought him here and he asked me to wait for him in case they decided to not admit him for dialysis. His face was very swollen and I said, ‘how could they not take care of you?’ The days they do not admit him are the worst days.” “They offer dialysis only when it’s an emergency and I think that is the saddest thing about this. This is a human life and in this case it’s my mother and so this is really frustrating.” “There are times when they tell him, ‘You’re not getting into dialysis today, would you like to go home?’ That’s sad for me, because he’ll get sick sooner now.”
Impact on work and sleep	“Those days in the hospital for dialysis are the days that I am hospitalized too, I am practically hospitalized too. I cannot work. I mean, I work a little during that dialysis time. I have a daily routine with work except the days she has dialysis. When we are at the hospital late its tough. The days that she needs dialysis, I do not go to work early, I stay with her until she wakes up and then drop her off at the emergency department. She updates me over the phone. Once she tells me she’s connected to dialysis, I know the schedule and I try to be there when she is done with dialysis.” “When she gets out of dialysis early, I have to get permission at work to come and pick her up at the hospital. Its tiring.” “There are days when he is sick and she has to call work and say ‘Let me off work’ and they say ‘It’s not possible.’” “I know that every Tuesday, I have to take her to dialysis. Sometimes it’s difficult because she used to do everything on her own and now I have to do it; I have a meeting at school because I’m part of the PTA; I have to postpone some things to be able to look after her.” “I cannot work. I want things and I cannot have them. That’s the most stressful thing. And the second thing is that I do not know how my mom is. When she’s in the hospital or when I’m at school.” “They told my mom that her fistula was not working. That’s why her bleeding did not stop. She had to spend the day at the hospital getting her fistula fixed. That day I had to go to work at 6 in the morning and it was hard for me because I did not want to leave my mom at the hospital. I did not have any updates about what was going on at the hospital. I called work and told them I was going to be late. I was very tired because I had been awake the entire night. It was hard for me to drive because I was too tired.” “I cannot go to sleep because I’d be keeping an eye on him, but then I’d start thinking about all sorts of things.” “He wants me to be here before he leaves dialysis but I cannot miss work because they will going fire me. I left work twice and they told me that if I wanted to keep my job I had to be there.” “I cannot go to sleep because I need to keep an eye on him.”
Emotional relief after a session of emergency-only hemodialysis	“Once we get to the hospital and he’s admitted for dialysis, I’d be like, ‘Thank God.’” “I feel less stress when the hospital is going to take care of her. When she is discharged from the hospital, she’s good. We all see it. Her illness does not affect her as much and she says ‘I’m going to do the dishes’” “Yes, because Sunday, for example, is already a bit difficult. Monday is more difficult and the day she goes to dialysis because, as you say, when she first comes out of dialysis is when she can eat. Better without nausea or feeling bad, but she’s there sometimes, this day she’s out.”
4. Effect on children
Dropping out or missing school	“Last year, I missed school three times because of my mom’s illness. In previous years, I missed school quite a bit because my mom needed a interpreter at the hospital. So I missed a lot of school because I was helping my parents. After school, I help with everything. I do the housework. I help my dad clean the yard outside. Sometimes I have time to do my homework. I also call my mom between classes to see how she’s doing. I got in trouble at school for doing that.” “I was about to finish school that year but I could not do it. I was in 12th grade. I would like to return to school but I have not been able to. Perhaps in the future I will. If my dad could receive dialysis regularly, I would able to return to school.” “She was in college and she failed some classes and she did not want to go back again. I told her, ‘how will we manage with your dad and his dialysis?’ Just wait, because if he dies, we’ll figure a way to go back.”
Psychosocial distress	“My son worries a lot. ‘How is he doing, mom?’ I say, ‘good, son, he’s doing good.’ He’s a worrier. He also wants me to be there with him, and it’s not easy to divide myself in half.” “I wake up anxious to see my mom. To know that she is okay. I get ready to go to school and when I come back home I am happy because she is here when I arrive. When she is accepted to receive dialysis in the afternoon, I’m glad because I’m the one that picks her up from the hospital. There are times when my mom is sick and I am stressed and I cannot pay attention at school. I’m thinking about her and I do not pay much attention.” “We have three young girls. My daughter asks me, ‘is my daddy going to bring me a surprise?’ I tell her, ‘yes.’ She ask me, which one? I tell her, ‘he is your surprise.’ Then she says ‘I want to go to the hospital’ but she cannot go to hospital. My youngest wonders why her daddy is not home very much and she says, ‘I do not understand why my dad always has to go to that hospital.’ One night I had to bring my daughter to the emergency room and she said, ‘no, I do not want to be there, I do not want to be there for days like my dad.’ She’s the one that misses him the most. I hope that he does not get sick at night because it would be very difficult for me to bring them with me because a hospital is not for children.” “He sometimes feels that we do not understand his illness and he says mean things to me and to the children. My younger daughter said, ‘you were fighting.’ She saw everything. I do not want to talk to them about the fighting because I do not want them to hate him.”
Children assuming caregiver responsibilities	“My son scolds me when I buy foods high in potassium. He says, ‘why did you buy this? This is poison for my dad.’ Once, he threw 6 bananas in the trash. He says, they are good for us, but not for his dad and its not okay for him to even smell them.” “I was about 13 years old when she was diagnosed with kidney failure…and now I’ve started driving and I give my mom a ride to the hospital. When she has to go to the hospital in the afternoon, I take her. My sister cannot do it because she has 4 children.” “Sometimes my dad says that he feels like he cannot help himself. I tell him ‘well, you do not need to do that. You have helped us so long and now we need to help you, whenever you need that.’” “My daughter takes care of her dad. She is the one I trust with him when I leave the house. She watches over him, gives him lunch.” “Well, I’m the oldest daughter. I have the responsibility to look after him. I’m not going to let him die. I took that role after seeing that nobody was helping.”
Juggling multi-generational caregiving of children	“But my little girl, the smallest one, I feel terrible for her. She is the smallest and she needs more attention but sometimes I have to leave her with my older children. I have to leave her so that they can take care of her while I’m in the hospital taking care of him because when he leaves the hospital, he cannot walk.” “I was gone for three days while in the hospital with my dad. My son says ‘mom you were gone for three days and you said it would only be two.’ Its hard. The day I came back, my son had a school event to receive his supplies and meet his teacher. On my way home, he called and said, ‘mom, are you going to make it?’ He wanted me to be there. I said, ‘I’m coming.’ I went without any sleep and without a shower to school with him. After that I also had to go with my other child.” “I told my daughter, ‘I have to put money on a card for you so that you can call an Uber.’ We cannot take the bus because it arrives at the hospital to late. Then I pick her up from school and then we go back to the hospital.”
5. Faith and appreciation
Comfort in God	“God takes care of us. We came to the US not knowing how to navigate things. We did not know anything and had to be strong and hold on to God’s hand. Its difficult. We did not know the streets that are one-way.” “God is always taking care of us. Like a brother he is always there with us. We have a loving God who gives us strength every day. We say, ‘do not worry. You will be fine.’ He was starting to feel depressed but with God’s help, we are supporting him. We cannot do it alone.” “I thank God for all the bad stuff that has happened to me because it made me mature. I now have better health and a better relationship with my mother.” “Every time I go to sleep, I ask God and the Virgin Mary to not let anything bad happen during the night. If he’s going to get sick, let him instead get sick during the day when my daughters aren’t there, because it would be very difficult to bring them with me.” “I would give her another life and she really deserves that and more, why? Because she’s the woman in my life, she’s the woman I chose and I do not regret it at all, on the contrary, I say, it’s good that God gives me these tests so that I can overcome them, why? Because I have to push forward and we are going to push for work with God’s help.” “Thank God He gave me strength because I do not think I could do it by myself.” “I always ask God to give me patience to take care of this man. God has given me so much patience.”
Appreciation of healthcare	“Everyone I know with kidney failure has gone to Mexico and does not live long. Even if they receive dialysis, they do not treat them the same like in here.” “I thank the Lord that my loved one has this opportunity to receive the dialysis. In Mexico, he would probably not receive dialysis and he would not be with us.” “I tell him, behave well with the doctors at the hospital because they are doing you a favor. Be grateful with them because they are taking proper care of you.” “In Mexico, perhaps it would be more difficult. For people without resources that did not study, life with this illness would be difficult. I lived in a very small town in Mexico and a lot of people did not have money. They die at the hospital because they cannot pay.”