Copyright © 2011-2015 by Nobo Komagata (http://nobo.komagata.net/pub/Komagata11-Grandma.html, http://nobo.komagata.net/pub/Komagata11-Grandma.pdf)

A Day with My 98-year-old Grandma

Nobo Komagata

insi2.org

First written: September 25, 2011; Last updated: March 13, 2015

In my household, the birthday person does something special on her/his own birthday. In the past, I cooked avocado rolls for my wife and daughter on my birthday. This year, I decided to spend a day at my grandma's bedside. She is ninety-eight years old, suffering from physical weakness and dementia, and staying at a complete-care nursing home in Japan. I chose this activity partly because my birthday was during our three-week trip to my home country, Japan.

On the day, I woke up very early, took a shower, fixed a breakfast for my 88-year-old father-in-law and myself, said good-bye to my wife and daughter who were still in bed, left there at 6:30 am. After about 30 minutes of walk, I took three different lines of train and walked another 10 minutes to the nursing home. It was 8:10 am, sufficiently tiring, and very hot. Even though trains were well air-conditioned (despite the nuclear disaster in Fukushima earlier this year), I still had to walk a lot before, between, and after the trains.

Grandma lives on the fourth floor of a buildging in one of the largest nursing home complexes in Japan. I greeted the workers. Then, I went to the table where Grandma was finishing her breakfast. She was sitting in a special wheel chair, which is more reclined than the standard one. I said, "Grandma, it's me." Sadly, she can no longer recognize any of her relatives. I thought she nodded. But it was difficult to interpret what it really meant. Everything she eats/drinks is mashed or jellied. The last item on the breakfast was jellied tea. She was drinking it by herself with a spoon. But she stopped after a little bit. One of the workers said that Grandma prefers sweet foods/drinks. The next thing I noticed was that workers took turns to feed her the jellied tea until the cup was practically empty. Occasionally, Grandma made a face; she didn't seem to like it. But she cannot talk very well. The workers diligently fed her little by little. I thought it was probably the rule that workers feed the elders completely.

The very first thing that struck me was that Grandma doesn't have much freedom. She doesn't have control over what, when, and how much to eat, as well as what, when, how to do most other things. Basically everything has been fixed by the nursing home. I've read somewhere that freedom in nursing homes is important for the well-being of the residents. Of course, it would be impossible to accept all of what the residents want. Still, I guess many residents going over such a regimented life would experience a lot of stress.

As far as I was able to see, all the workers, mostly relatively young, were working hard, almost continuously. Some were sweating a lot. The room temperature was fairly high, possibly because of the reduced air-conditioning, a consequence of the nuclear disaster caused by the tsunamis earlier this year. By all means, I appreciated the work of the workers. Without it, all these elderlies cannot sustain their lives. At the same time, I felt frustrated that they all seem to follow the rule to feed everything, despite the residents' reaction. Suppose that there was a worker who would respect the residents' freedom. She would not feed certain things if a resident protests. I would imagine the residents would appreciate what the worker does. At the same time, the worker may be warned by a supervisor or coworkers, may feel uncomfortable, or even might be fired for not following the (supposed) rule. If this is the way, workers who want to respect the residents' desire may not be able to continue working. This is just my hunch, though.

After finishing her breakfast, a worker returned Grandma to her room. She lives in a room shared by three other residents, much like a shared hospital room. The only partitions between residents are curtains. Two residents have their beds by the window and can see the outside. Not the other two. There is one toilet in the room. To each of these rooms shared by four residents, one worker is assigned. The residents eat their meals in a wide hallway/space right outside their rooms. There are a number of these rooms on each floor.

After moved to the bed, Grandma started to point to something. More accurately, she moved her pointing finger sideways. I thought she was pointing to the blanket. Not really understanding what she wants, I covered her legs with the blanket. She nodded. So, I thought that was that. After a while, she did the same gesture again. Her legs have already been covered. So, I tried to tidy up the blanket so that it looked neater. She nodded. After a while, she did the same gesture one more time. This time, I tried to look more carefully where she was pointing from a slightly different angle. Then, I thought she wanted to draw the curtain, i.e., the partition. So, I drew it and secluded her area from the rest of the room. She nodded. She stopped repeating the gesture. Maybe, she was asking for this from the beginning. I just didn't get it.

Then, Grandma started to speak. She spoke mostly unintelligeable (at least to me) things for a while. One thing I understood was something like "I had many children and grand children." I said, "I know I'm one of them." But she didn't respond to this. I think she repeated this several times. This was the most active moment during my one-day stay. Then, she was taken to a bath, which is a once-a-week event.

After the bath, she directly went to the lunch area. It was 11:45am. One by one other residents were taken to the lunch area. I notieced that one resident was able to move on her own in her wheel chair. She seemed to be paralyzed in one side of her body. I saw a short-term resident who was able to walk on her own. Evreybody else was on a wheel chair and was transported by workers. Except for one short-term resident, everyone else was female. Most of them cannot speak or feed by themselves. Most of them are either sleeping or very inactive. When the TV set was turned on, some residents turned toward it. When the lunch finally arrived, it was almost 45 minutes since Grandma was taken there. Most residents had to wait more than half an hour. With little stimuli while waiting, they stayed inactive. Although I could have talked to Grandma, I didn't. She was quiet and seemed a little tired, possibly from the bath. After the TV set was turned on, she was staring at it.

The lunch for the day (July 7) was special for a traditional Japanese event called Tanabata. Those who can eat regular food got chirashi sushi (vinegared rice in a bowl) with crab, eggs, and vegetables. Grandma got tiny dishes containing basically the same ingredients, all mashed. I asked her what she wanted. I passed the dish she pointed to. She ate some of them, but not much. Again, the workers came and fed. Occasionally, Grandma made a face. At one point, a worker fed even though Grandma didn't finish swallowing the portion in her mouth. Her mouth was full, not being able to swallow. After realizing the situation, the worker took her to the nearby sink and cleaned her mouth. I gave her some more paper napkins. She nodded. Again, jellied tea was served at the end; she didn't drink much. A worker said, "You took a bath this morning. So, to avoid dehydration, please drink." Although I was not comfortable considering the lack of the residents' freedom, what the workers were doing sounded rational. After the lunch, Grandma was taken to the toilet and then to her bed. She closed her eyes and started to snore.

It was my lunch time. I visited my parents, who live in the same nursing home complex but in an independent-living building. They have been there for seventeen years. The building my parents live serves three meals every day and offers various services, including club activities. There is a shared bath, which is maintained by the workers. Other than these, the residents are expected to live with minimal assistance. Each unit has a private toilet, a small sink, and a very small refridgerator. Most units are for single residents and a much smaller numbers are for married couples. Since this is partially supported by the national and local governments, the cost is quite reasonable. This is a popular place to live, especially for single seniors, and there is a long waiting list. I finished my lunch: fried dumpling, stir-fried pork with green pepper, fried rice, and jello with real white peach in it. They bought these at a local supermarket, as they no longer cook.

My father has been suffering from rheumatoid arthritis for the past few decades. In addition, he had surgery for colon cancer a few years ago. During an examination for the cancer, he also got stress spinal fracture. His feet are deformed and swollen; this makes it rather difficult for him to walk. My mother was hit by a bicycle last year and stayed unconscious for a few days and once completely lost the control below the neck. The physicians said that she would be lucky if she can move around in a wheel chair. However, she regained the ability to move her body gradually. After several months, she was able to walk on her own, albeit very slowly. But now, she can outpace my father when they walk together. In addition, she can now use a computer and write letters legibly. She can also use spoon and fork, but still has difficulty using chopsticks.

So, sooner or later, my parents may no longer be able to stay in the independent-living building. But my father told me that he does not want to live in the complete-care building where Grandma lives. He goes there often and I think he does not like how the residents are treated. Both of my parents have a strong desire to control ... everything. So, the lack of freedom would be the last thing my father would want. Grandma was living in the same independent-living building as my parents are living now until about six years ago. At that time, she was suffering from knee pain and dementia. So, my parents have seen what happened and must surely be able to forsee what may happen to them.

Since my parents live in the same complex as Grandma, they visit her often. However, it seems to me that my mother does this purely as obligation and not really enjoying the visits. Some time ago, I asked Mother whether she enjoys the time at the bedside of Grandma. After a silent moment, Mother said no. I think this is an honest response. One might wonder what kind of relationship do Grandma and Mother have. This kind of relationship across generations can be explained with the help of attachment theory (pioneered by John Bowlby and Mary Ainsworth; see, e.g., Karen, 1994). The main idea is that the feelings and behaviors of a parent shape the child-parent relationship in a way the child tend to carry over the same characteristics. For example, if a prent is controlling and not sensitive to her child's feelings, the child would grow to be like her parent as well. In many cases, the relationship between a parent and her child might appear all right superficially, but it may not be genuinely close. When we think about senior issues, this kind of knowledge must be useful.

After my lunch, I went back to Grandma. She was being taken to the hallway for snack. The snack was a kind of jello and tea. After a slight hesitation at the beginning, Grandma ate up the jello by herself. As a worker mentioned earlier, she seemed to like sweets. Since she spilled some jello, I brought some paper napkins. She nodded. But she didn't drink much tea again this time. A worker came and said, "You must finish this. You are not doing well. You didn't do well at the lunch time either."

At the end of the snack time, there was a brief recreation time. A worker brought "kamishibai." This is a traditional form of Japanese entertainment, mainly for children: to read a story with a series of illustrated sheets in front of the reader. The script is written on the back of the illustrated sheet for reading. The story is about Tanabata. The worker started the story as if she was reading to a group of preschoolers, with a special tone of voice. Not necessarily always, but I noticed that the residents were treated like small children. I wondered how the residents would feel. Even though most residents on this floor are demented, that might touch the nerve of some.

After this, Grandma returned to her room. She was quiet. Then, she started to rub her abdominal area. I asked if she had a pain. No answer. After a while, I heard a sound from her abdomen. I immediately recalled the sound of a newborn baby defecating. I asked Grandma if she wanted a worker. She nodded. So, I went out and called a worker. They cleaned it. They opened the window as the smell filled the room. Then, I was told that Grandma was given some laxative in the morning. She must have been uncomfortable and quiet after the bath, possibly because of this. Then, she slept till the dinner time.

At the dinner time, there were new workers, presumably for the evening shift. Referring to Grandma, one worker told me, "She is a star here. She says 'thank you' all the time." After a while, when the worker said something positive about Grandma, I heard Grandma saying "thank you." This was the first vocalization since morning. Grandma was a proud person. When I was a child, she told me that her maiden name is the same as that of one of the then ministers. She said that they were from the same clan (I don't really know how close they were). At the nursing home, nobody except for this worker stimulated this part of her mind, i.e. positive comments. This worker is much older than most others. She might be connected with the residents more than other, relatively young workers. But the most crucial point here seems that Grandma probably sensed the respect of that worker and responded to it. Although she certainly suffers from memory loss and near loss of speech, Grandma's behavior seems quite normal in response to the stimuli. That is, she responds to stimuli naturally. Unfortunately, the stimuli are mostly negative, without much freedom or respect. It is quite possible that Grandma feels this most of the time, except with a small number of workers.

At the same time, there is a problem with having pride, although this is not commonly recognized, especially in the western world. When pride is competitive, i.e., felt in comparison to others, all sorts of issues associated with competition would be involved (Kohn, 1992). In many Asian countries, humility is often valued more than pride. However, this is not the case with Grandma. She was/is proud. She was/is competitive. I can tell this from my experience with her as well as the way she responds to compliments. But as she loses more and more of her abilities, what would be her feelings? I think she may be suffering more because of her pride. In fact, we may all be suffering due to unnecessary pride.

Then, it was time to leave. It was a valuable experience. I was not entirely comfortable. But I needed to face the reality. Before the trip, I read a brochure describing a nursing home in the U.S. There, I noticed a description, more or less like, "leaving your elderlies in a nursing home is not the same thing as abandoning them." However, when I left Grandma, I cannot avoid recalling a phrase in Japanese, ubasteyama (mountain where old women are abandoned; uba = old woman/women, ste = abandoning, yama = mountain; link at the end). Can I really affirm that this is not ubasteyama? I visited Grandma only a few times since she moved from the independent-living to the complete-care nursing home six years ago. Do I feel guilty? Yes. If Grandma's children and grandchildren can take care of her, she might feel more comfortable. Maybe not. My parents are practically disabled. I heard that one of my uncles suffers from Perkinson's disease and stays at a complete-care nursing home far away. I don't even know where most other relatives are. In modern society like Japan and the U.S., is it really inevitable that elders be cared by professionals, not by their relatives?

At this point, I cannot help but compare the situation with child care. Again, in modern society, more and more of child care is being done by professionals, not by their families. Thus, the trend is certainly that our children and elders are being cared more and more by the system through economic means. When my daugher was younger, we decided that she would stay home until she goes to kindergarten. After reading many books on parenting and relevant topics, we thought that it is not a good idea to leave our daughter in the hand of "professionals." That is, we did not want our daughter to be taken care of by those who do it as a job, i.e., for money. We thought that there is something different between parental and professional care and that there are limitations with professional care of young children. More specifically, we thought that when people do caregiving service for money, they may not feel the kind of responsibility parents would feel. Of course, such responsibility may also go beyond the ability of the caregivers and it is not necessarily more desirable.

When we left Japan almost twenty-five years ago, all of my grand parents were alive and my parents were healthy. Although I could have thought about the current situation, I did not really want to pay attention. Also until relatively recently, we did not plan to have a child. My wife and I were enjoying comfortable professional lives. Only after our daughter was born, we started to pay attention to child rearing and child care. Only recently, I started to pay attention to the situation surrounding my aging relatives. My current situation makes it impractical to continually care for Granma and my parents. But they all happen to be in nursing homes. I don't know if I should consider this lucky.

Cmmuter trains on the way back were crowded too. One can imagine New York City subway and double the number of passengers. The trains were well air-conditioned. But while walking to/from the train stations, during transfer, and on the platform, it was hot and humid. So, the commute was sufficiently tiring, especially toward the end of the 30-minute walk at the end of the journey. But that is what most of the Japanese do. Some researchers (e.g., Senauer & Gemma, 2006) point out that this is one of the main reasons for the lower obesity rate in Japan (3.6%, cf. 32.0% in the U.S.).

I returned to my wife's father's house, where we were staying for three weeks. Since I had a big lunch, I skipped dinner. My father-in-law was already in bed. I greeted my wife and daughter and we all started to prepare for bed (actually futon on tatami floor). Briefly, I told them what I experienced and they told me what they did while I was away.

My father-in-law is eighty-eight years old and lives in the house alone. He is still independent, but there are signs that he needs more and more help, especially after he spinal stress fracture a year earlier. He used to walk hours a day. Not too long ago, he even walked to his deceased wife's cemetery about eight mile away. But he now walks for about hundred feet at a time, very slowly. His mind is clear, still studying English and wants to discuss current affairs with those who are willing to listen to him. But it is more and more difficult for other people to communicate with him due to his hearing problem. He subscribes to a dinner delivery service, comparable to Meals on Wheels. This service is organized by the local government and supported by volunteers.

Since last year, my father-in-law is also getting help around the house: mainly cleaning, washing, and other household chores. This service is provided under the relatively new Long-term Care Insurance (kaigo hoken), implemented by the Japanese government about ten years ago (see the link at the end). The social support system in Japan is more like European systems than that in the U.S. The Long-term Care Insurance is no exception. It is somewhat like health insurance. While it involves the government money, everyone over the age of 40 contributes to the fund through withholding from their income. People over the age of 65 are eligible to receive various services, mainly home visit by helpers and visit to day care centers, with 10% co-payment. I think underlying assumption is that there will not be enough "facilities" for elderlies in the future and thus many elderlies are expected to stay home with some help. As my father-in-law became older, we were concerned about cleanliness and other housekeeping conditions in his house. And this visit was the first time we observed how helpers work in his house. We were glad that the house was clearner and more organized. Father-in-law seems to like the service. He also seems to like the opportunity to talk to the workers during their visits. Since the workers are not really supposed to spend time talking to their carereceivers, they simply let him talk and work.

So, at least for now, this arrangement seems to be working. Father-in-law does not want to be treated like an old man. He has never mentioned that we wanted to go to nursing home. He aspires for independence. As his ability declined, home visit was a reasonable compromise for him. But this cannot continue forever [note: actually, the case worker told us in July 2012 that he can stay home as long as he wishes]. During our stay, he fell as he was going out of the house. Fortunately, he landed on a soft ground and there was no problem. But we cannot deny that the risk of falling is increasing. The situation with my father-in-law contrasts with that of my grandma and my parents. We are increasingly concerned with Father-in-law. Since my wife's sister lives about one hour away from Father-in-law, we all tend to count on her when emergency happens. But she cannot do this freely as she is working full-time to support herself.

Now, I need to realize that I am already eligible for AARP membership. Only after leaving my professional career, I started to see the lifespan of a person seriously. In fact, I cannot help but start thinking about my own aging and dying process. Obviously, it's not fun. However, we all need to go through it. And as most prominently discussed by Buddhists, we should face the reality and make the most out of it. It's like we are on an airplane which is known to crash, not knowing when it happens. One way to deal with it would be to "plan" a soft crash. This life-as-a-soft-crash metaphor seems to be helpful. While we know that we are going to crash, we can still take advantage of the time during the flight, because the process of crashing has already started and is progressing gradually. In a sense, we can realize the flight experience both as living and preparing for dying. Are my relatives mentioned in this essay doing that? I don't think so. How can we do it? The best way I can think of is to live mindfully, without attachments to materials, status, relationships, and even mindfulness ... everything (see, e.g., Moffitt, 2008). Whether we can do this, it would surely depend on our commitment and effort.



Postscript

July 30, 2012

October 19, 2012

January 13, 2013

March 10, 2014

March 13, 2015

References

Note: The URL's were valid as of September 25, 2011.

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