Life Design for Well-Leaving through Well-Living
Life Design for Well-Leaving through Well-Living
Presenter: Rhee Nami (CEO/Creative Director, Studio BAF)
Life design for well-leaving through well-living is a very significant theme for all of us to understand. Through this presentation, I would like to share my personal experience regarding care design at the final stage of life and further discuss how such design can be proposed as a policy.
Life Needs Design
Recently, design has been repeatedly evolved and expanded into the public domain and people’s lives. All of us design our lives independently as a master of our own lives, and design is not delivered as a noun but activated as a verb. It is evolving from a design for better marketing into a design for better life. From this perspective, I believe that my own design philosophy, “Jajakjajak,” which means enlightening your life by nourishing yourself, is a very important concept. As nobody can nourish your life for you, you should enlighten your life by yourself through various experience, and I believe this is the most important foundation for the life design philosophy.
Care Design for the Last Stage of Life
All of us are growing older and going toward the end of life. In the final stage of life, we cannot take care of ourselves so that we need to ask for someone’s help. In other words, ‘care’ is required and design for such care should be made for the purpose of realizing the human’s dignity.
Our society is undergoing many changes. In 2025, the aged will account for 20% of the total population in Korea and the country is about to enter into a super aged society. Under these circumstances, we need to deeply consider and have great interest in the quality of life for the aged or people in the final stage of life. Today, what result will be brought about from a super aged society, together with the increasing number of one person households which is rapidly emerged as a social issue? We are witnessing serious social issues such as the increasing isolated deaths. In addition, one out of ten elderly people is diagnosed with dementia, which is easily found around us, as of 2021. Considering the increased average life expectancy, the number of elderly dementia patients will reach at least 1 million in 2050, and one out of three elderly people will suffer from dementia. It is now time to meticulously consider a realistic solution for those who wants care, especially family care for dementia patients.
How long dementia last? If the disease is a starting point to prepare for dying, what is the ending point? Though it may vary depending on each case, a relevant report shows that the average duration of life for dementia patients spans 10.3 years. Assuming that the life expectancy is an age of 85, we may spend 1/10 of our lives suffering from the disease during the last stage of life. If the disease lasts for ten years from its occurrence, we need to consider what requirements should be met to end our lives without any regret. According to the Quality of Death Index survey conducted by the Economist Intelligence Unit (EIU), people wish to end their lives with dignity and respect in a familiar environment in the presence of family and friends without pain. In this survey, the U.K. topped the list every year while Korea regretfully ranked 32th out of 40 countries.
Well-Dying and Well-Leaving
Death is treated as an ending of life. The concept of well-dying is defined as “end of life with dignity and respect” and “self-determining death,” and in this way, it focuses on death itself. However, the happy ending of life should not be regarded as death but as a course of life lastly given. The last stage of life for which we will spend about 10 years from the development of dementia is as long as the time for which we make efforts to realize our dream during the infancy and adolescence.
Now I would like to propose the concept of well-leaving where people can end their lives happily with their families’ care, on the assumption of well-living necessary for the last stage of life. For well-leaving, there are two things to do: leave well and let their families go well.
At the last moment of life, we meet death but before such moment approaches, we still spend time that belongs to life. The last stage of life is not a time that people just sit and wait for death but that they need a thoughtful care to ensure they can pass away with happy memories. For a happy end of life, well-living and well-leaving, which means how well we live and leave, should be realized. For well-living, we should make efforts to achieve self-realization in our individual lives while for well-leaving, we need to realize the human’s dignity through others’ care. Once they are satisfied, the ultimate life design for the happy ending will be completed.
Life Design Project for the Happy End of Mr. Rhee In-haeng’s Life
The belief that life design is necessary comes from our family’s recent experience, and I would like to unfold my story together. My family with the four generations has been keeping a record of the “Life Design Project for the Happy End of Mr. Rhee In-haeng’s Life” in order to take care of my father aged 90 reaching the last stage of life and we are testing and fulfilling care design.
I have a lot of happy memories with my family consisting of the four generations from my parents (both father and mother born in 1933) to my granddaughters. In spring of 2019, my parents were not able to celebrate their 60th wedding anniversary because my mother passed away, and subsequently, father habitually said he was lonely for a while. Since my father has independently and perfectly handled everything in his life, we did not accept such remark seriously. In fact, however, it was the beginning of his depression and he was diagnosed with dementia soon. It cannot be treated as just an individual’s disease but can be a challenge for his family because they are required to take care. We broke down with many different emotions in the face of such a situation we have never experienced and at the same time we were deeply worried and confused about who would take care of him.
In retrospect, when he habitually said that he was lonely, he might mean that he was feared of where and how he would live and how his life would end. He was afraid that he would live in a strange place if he becomes incomplete so that he cannot live his life by himself. For our part, we had to find out a realistic method to keep daily lives with their own family while taking care of him. To that end, we established a ‘plan for caring 88 year old In-haeng with dementia’ as a holistic plan for the last stage of his life.
There are several issues that we need to wrap up at the last stage of life. From the well-living and well-leaving perspectives, the ‘family care’ issue is to settle an individual’s properties and ensure that the quality of life for the family and the daily caring system are both secured and maintained together. We also need to check whether the housing environment is safe and clean and identify the caring cost and the national support system to establish various plans.
When my father suffered from an early stage of dementia, our family made efforts to ensure that he could engage in his favorite activities and meet other people so that he was able to share old stories in order to recall his disappearing memory. Despite such efforts, the disease continued to progress. Back then, he was trying to figure out how to deal with his obsolete house, and our family decided to rebuild the house where we had lived for long in order to design dream for our family and give him new ‘expectations’ instead of fear. We felt the mixed emotions when we saw our family’s space where we spent more than 40 years tear down, and then a new project for our family started anew from scratch, leaving everything behind.
We started practically considering how and for what we would build a new house and needed a detailed plan. Since we intended to build a co-caring system rather than an individual-centered system, we sought to review the possibility of a common house for the sustainable family care based on the long-term rental housing project. After we found a method of financing the building cost by using the old house as security, we came up with a detailed plan. In the bold and courageous design proposal, it was important to realize a caring space, and we planned a two-story structure where father would stay in the lower floor and the caring family members would stay in the upper floor in order to easily check his condition or a one-story house where each would have an independent structure but would be able to communicate with each other well.
In light of our experience, a caring family needs not just a large space but a space where they stay and have meals during the daytime and can identify a moving line at a single glance with a rest room closely located and further enjoy emotional stability. In addition, as one person cannot take the full charge as a caregiver, it is necessary to organize a caring system by assigning roles and schedules for care to family members and two caregivers. Under such system, our family members experienced and observed various daily situations with father and proposed a variety of plans to handle such situations, and it was interesting to see such caring through collective intelligence.
For the efficient communication, we need a detailed plan. As all the family members might feel a sense of tiredness in terms of communication scope and cycle in gathering together and sharing information, caregivers who closely observed and stayed with father at all times and three daughters frequently gathered to share every detail of his conditions and other family members separately gathered and shared what happened on the relevant days. In this process, what is the most important is to communicate with each other with respect, adhere to the principle of fairness and ensure that nobody will feel a sense of isolation and relative deprivation.
Proposed “Long-term Rental House for Sharing the Burden of Care” Separately from or Together with Family”
I would like to propose a family care idea entitled “Long-term Rental House for Sharing the Burden of Care” Separately from or Together with Family” based on our family’s experience. First, we need to address one of the most difficult issues, where to take care of a dementia patient in your family. They have to worry about cost arising from entering elderly nursing homes or using daycare centers for elderly and home care services as supported by the long-term care insurance. In choosing between the family care and the use of care centers, there is an obviously reasonable option provided from the universal welfare system but people have to feel difficult in making a choice.
In case of the family care for a dementia patient, among others, it is impossible for family members to continue working for a living only with the help of the home care services for four hours a day and 80 hours a month, and thus, they need to expend a great amount of the care service. However, there is a blind spot in a supportive policy in this regard. If family members’ sacrifice is required to take care of a dementia patient, someone in your family should give up his/her work for a living, leading the family and personal lives to the ruin. It is necessary to consider all interested parties’ positions to keep caring and their personal lives going together, and create a new housing culture support policy to encourage for the family care culture as a driving force behind our society. In addition, social issues are so dimensional that they should be resolved from the contextual perspective, and a common security net may be one of the solutions.
In this regard, I will give proposals as set forth below.
First of all, if more jobs are created for one person households, regardless of age and gender, and more home caregivers as a required occupation group in a super aged society are fostered and supplied, the family care may continue with the active support of such home caregivers. Recently, a concept of ‘social family’ is expanded based on solidarity beyond blood ties. In line with such concept, if a caring-centered family concept is spread and a caring culture is created, new social issues will be dimensionally resolved.
The idea of ‘long-term rental house for sharing the burden of care’ refers to a type of house where the interests between families who needs home care services and home caregivers as one person households may be fulfilled and a safe, efficient and clean co-housing is provided in form of long-term rental. In order to realize the idea, it is required to become a social family in order to enjoy the efficiency of time and space and depend on each other and then create an efficient co-caring housing environment.
As a result, well-living for all will lead to well-leaving, and various professional design areas should join this effort. For example, a caring space should be designed as a space comfortable and attractive enough for anyone to wish to stay, and it should be efficient, safe and convenient from the perspective of universal design. The government’s policies have been focused on the care service for dementia patients. From now on, we need to harmonize inclusive design which covers family members and all interested parties being involved in caring; participation design which enables users to participate in addressing issues together with the government and society’ policies; and social design which dimensionally resolves social issues such as super aged society, one person households, jobs and isolated deaths for life design to realize a true well-leaving.
All of us are growing older. Now we can consider care for our parents but soon will consider care for ourselves. Therefore, we need to consider creating a culture from the idea of social family or sharing the burden of care and start a social dialogue about a culture and policy of sharing the burden of care that should be subsequently put in place. Since those who take care of their family member suffering from dementia are in different settings, they consider what is the best choice in such settings and make a choice that are viewed adequate to their situation. Thus, I believe, every choice is the best choice. We are endeavoring to ensure our parents wrap up their lives happily at the last stage of life. I offer my sincere respect and support for those who have had many worries and fears like me or for a longer period of time.
