You took care of me, now it's my turn to take care of you

Undefined

You took care of me, now it's my turn to take care of you

June 1June 2

You took care of me, and now it’s my turn to take care of you. My name is June Yasuhara. I was born in San Jose where I have lived all my life. I am the primary caregiver to both my Japanese parents who have dementia. My mother, Eiko, who is 83 was diagnosed with Alzheimer’s in 2017. She is originally from Japan and came to the United States when she was a teen. My dad, James, is 87 and he was diagnosed with mixed dementia in early 2019. He is also a native of San Jose. Their love story started at a coffee shop in San Jose’s Japantown and their lives continue in the same area as of October 2019 [when] I moved them into an apartment to not only make it more convenient for me to care for them, but also to have them around familiar surroundings.

My parents suffering from a memory loss disease is something that I feared since I was a teen. I suffer from GAD, Generalized Anxiety Disorder, and every time I have a major episode, my parents’ health would be one of the main things I would obsessively worry about. Now I’m living my worst nightmare. I never knew the names associated with a cognitive impairment until my mom was diagnosed with Alzheimer’s in 2017 after she was repeating the same comments within minutes of each other. I went to a memory loss workshop offered through Kaiser and this is when I learned about dementia. It was very [surface-level] information and quite honestly, I was scared of learning more in depth about it. I just wanted to take it slow and learn as things transpired.

Since mom’s diagnosis, my dad was primarily taking care of her. There [weren’t] major changes in their lives. Dad continued to take mom to watch him bowl three times a week and he was capable of getting meals prepared and taking care of day-to-day tasks. Actually, or so I thought. My normal routine was to visit every couple of weeks, bringing dinner and fun things for mom to keep busy with. During my visits, I started noticing things that just weren’t right. My parents’ room really smelled bad. I figured out that mom was wetting the bed and my dad would use a heat lamp to dry the towels he had lined the bed with. I realized that my dad was preparing macaroni and cheese and Top Ramen mixed together for their meals. I noticed mom wears that same sweater when I come over, more than a coincidence now. I felt so guilty for not knowing this is how they were living and at the same time, shocked at how they could live their lives like this. Little challenges started hitting and I was getting increasingly frustrated at trying to figure out alternatives to make their daily lives work.

In December 2018, I got a text from my dad's very close friend’s wife and she gently expressed her and others’ concerns that dad hasn’t showered or did laundry in a while. I did think he smelled weird, but just figured it was old people smell. I then noticed his routine of taking off his clothes, hanging them on a coat rack in their bedroom and using the same clothes the next day. I never questioned his bad dandruff problem until I asked him to take a shower and he came out with dry hair. I asked why he didn’t wash his hair and he said because it doesn’t lay down properly if he does. When in the world did all this happen? I attributed his little bouts of forgetfulness to having to care for my mother, but it wasn’t until my sister and I took my mom on a trip to Japan in May of 2018 [when] I realized how much work she was. I also found out that mom stopped having interest in attending dad's bowling days. She said, “I don’t know how to explain this.” She would point to her head. It was very heartbreaking that she wanted to disengage herself of social settings because she knew that her memory was slipping. I also felt horrible realizing she was spending a lot of time alone.

In January of 2019, both my dad and my mom ended up in the emergency room on the same day. I brought mom in because she was not acting right. She kept holding her head. Dad had extreme shortness of breath and his bowling buddy brought him in. Mom ended up with a UTI and was released from the hospital. Dad had congestive heart failure and ended up spending a week in the hospital and 2 weeks more in a nursing care facility. My mother stayed with me at my home and spent a few days at my sister's home to give me a break. My sister has 8 children and homeschools them so her availability is scarce. When my dad came home from his absence, it was very apparent that he lost a lot of his memory. It was quite shocking that he didn’t remember his home, where he had been, what happened and a lot of other simple tasks. He obsessed on what to make for meals. He was really at a loss. I understand that for every day that one is away from their familiar surroundings, it takes a week for them to get back to normal.

This became survival mode for me, as I had to fully step in and make several changes to make this a happy and workable experience. I hired a caregiver to help out in the morning and I came in the evenings. I started ordering meals from companies that provided healthy low-sodium meals that were easy to warm up. I was working on enrolling mom into a Japanese senior center. There was a lot of paperwork, and [I] had to get doctor signatures and bank information. All of this took a lot of time and I kind of fell between the cracks. I found a Japanese speaking caregiver and started using her because it was socialization for my mom. My dad hurt his hip and was no longer able to bowl which is something he said he’d rather die than not do. I was getting stressed out that neither of them were getting the socialization that I felt they needed.

One day, I called my dad and he said there was a man in the house talking to him about putting insulation in the attic. I asked the guy to leave and I put cameras in the house. Now and then, I popped in to look at their day and my mom always would just be sitting next to my dad staring at a wall. Other times, I caught my dad being verbally abusive to my mom. He said a lot of hurtful things to her. He said she misbehaves because she wets the bed. He doesn’t understand her illness and [takes] the frustration of his memory loss on her. Sometime around August of 2019, we had a Japanese student living with my parents. This helped a great deal. But one night she called me and said that dad hit mom. I went up to the house and slept over. It seems she was getting out of bed when he was watching TV in the living room. I believe he wanted alone time. I talked to my sister and we thought they needed to be split up. Again, this was a very [hasty] decision to protect my mom. We found a senior facility for her to live in. It was primarily Asians and we felt she would benefit from it for so many reasons. It proved to be the opposite for both mom and dad. Mom would not sleep and she had to be put on a floor with higher supervision because she would wander and look for dad. At the same time, my dad didn’t fare well without mom. He sat at the kitchen table all day and wrote in a journal that he is all by himself. We had a caregiver with him during the mornings and early afternoon, but it just wasn’t working out. The senior facility didn’t let dad come visit because they feared it would set her back. So after a month, we actually brought her back home.

I found an apartment in San Jose’s Japantown. This area is between their house and my house, so it was much more convenient for me to come care for them. It also is located just a couple blocks from Yu Ai Kai and Akayama Wellness Center which are senior activity centers. They also provide healthy lunches for seniors. I am heavily connected with the community so it became a second home to my family. We lost our Japanese caregiver. She went on to pursue her dream as a singer. I got into a great routine of coming to their apartment in the morning right after a morning job of taking care of 2 boys and bringing them to school. I would get mom up and dressed and groomed for the day. I made breakfast. Depending on which day of the week it was, I received food from Yu Ai Kai or picked up food from a local restaurant and plated lunch and dinner for them. I then went home and came back in the evening to get mom prepared for bed and left after that. Soon the pandemic hit and they were both confined to their apartment. No longer able to attend the senior activities. Well, actually, shortly before this, mom got kicked out of Yu Ai Kai since you must be able to go to the bathroom on your own and she was no longer able to do this. Since I no longer worked for the family taking the kids to school in the mornings, I started sleeping over my parents’ apartment and start my daily routine with them.

I am currently caring for them, for both my parents. I have the same Japanese student that lived with them for a bit come 3 times a week for a couple [of] hours a day to give my parents some outside socialization. I brought an Echo Show so my sister’s children can “drop in” online and play piano, do exercises, or read to them. My parents greet the Yu Ai Kai delivery van and see Bob the food deliverer along with some other seniors who are waiting for their food as well. My sister comes occasionally to give some hours of relief to me.

The biggest challenge is not the physical part of my time, but it's the emotional part. It’s very difficult to see your parents at this state of reliance. My mom is fully aware of what she is going through and often says [that] she is a baby, that she is horrible and that she causes me too much trouble. My dad believes he is capable of many tasks, but in reality he isn’t and he gets frustrated at himself. He can get himself up and ready in the morning. He remembers so much of his young past, but doesn’t remember what happened 5 minutes ago. He doesn’t realize mom has Alzheimer’s and sees her blank stare or inability to verbalize herself as defiance and gets angry at her. He was raised by a strict father and I can see him treating mom as a child. He nags at her to eat constantly. She gets annoyed. I get annoyed. I tell him it's annoying and he yells at me to not tell him what to do and that it doesn’t bother mom. We go through several little arguments like this. I have to be the mediator between their illnesses. The constant little challenges get me frustrated as well. He asks the same questions over and over. It gets hard to be patient all the time. It's like a dripping faucet. Not a huge deal, but it can get very annoying.

Why do I continue to care for them? Like other Asian families, it's what we learned from our parents. It's just what we do. They deserve to live out their life as happy as they can as after all, they have done everything they can to make me a good life. I get very angry that both have been dealt this awful disease. My dad was put in an internment camp when he was a little boy and at the same time, my mom was cowering in a bathtub in Japan trying to escape harm from a bomb. Why can’t they live out this happy life?

I’m extremely open on social media and [to] anyone who wants to talk about this situation. I'm realizing that not many people are as open. My thought is Asians don’t want to burden others with their problems, or mental illness is a shameful thing. I’ve seen both sides. Because of me being so open in my situation, I have so many people sharing their stories, [about how] they are going through the similar situations in their lives, but don’t like to tell others. Another friend said that their family is trying to keep it quiet that his aunt is getting onset of dementia. I experienced a few uneasy situations. I brought my mom to a gathering of women she knew way back when. It was her cousin’s birthday. We were all at a table chatting and my mom must have said “Oh, it's your birthday,” about 10 times to her cousin. She interrupted a few conversations, and I felt almost embarrassed and in a way, [wanted] to protect her from being ignored. Another time when I was trying to set up playdates for my mom, I asked a friend if we [could] get her mother and my mom together as I knew her mom was in the early stages of dementia, and my friend told me that her mom doesn’t like to spend time with people with dementia because she doesn’t want to see what will happen to her. I felt a slight gut punch, as if some kid didn’t want to play with my kid. I can see how my mom doesn’t want to spend time with people and how hard it is for people to spend time with her. It's actually uncomfortable because she can’t finish sentences now or it’s hard for her to communicate her thoughts. She is in there. Her brain is processing what is happening, but at the same time her brain won’t allow her words to come out correctly. So, it’s really sad.

As I said before, I am completely open, so many people ask how my parents are and make comments to me out of the goodness of their hearts, but in actuality they can make me annoyed when I literally think about it. People say I need a break or “make sure you take care of yourself.” Honestly, this is something you can never really get a break from. To go on vacation takes an immense amount of work finding coverage and you continue to have to keep in contact and never stop worrying. I also feel very guilty when I’m not with my parents. Right now, I sleep over [at] their place and leave for about 5 hours to go to my own home during the late afternoon early evenings. I’m finding myself staying longer with them and leaving earlier from my home to return back to them. I’m certainly not complaining. I am choosing to be their caregiver, and have full support of my family. I don’t resent the position that I am in. I’m not saying it is easy either. There are many moments of frustration or moments where a good cry comes into play. I do know that I will never ever regret an ounce for being a big part of their lives.

For as much as I know, this is the circle of life. I’ve seen my parents care for their parents, and so it is my turn. I really don’t wish this on my children, and don’t want to be a burden on them. Research is very important to help people live out a dignified life. I’m angry because I feel they are being robbed of fully enjoying a wonderful fulfilled life that they both deserve. It’s funny; just last night my mom who doesn’t say much anymore, said to me, “I’m glad you are here, you are such a good daughter.” I gave her a new doll that she could tie the shoes, buckle and button the clothes. Something more interactive for her. I asked what the doll's name is. She said June. These are the moments that give me the energy to keep up going.