Physical anxiety experienced by the elderly in facing death

INTRODUCTION

Indonesia, as a developing country, has a significant impact on improving the standard of living and well-being, which directly increases life expectancy (UHH). The UHH in Indonesia in 2020 was 71 years, making it an elderly age group.¹ Elderly individuals require special housing or specialized housing facilities to maintain their identity, ensure a reasonable life both physically and socially and psychologically, enjoy the fruits of development, avoid pressure and humiliation, and receive attention from society and the state.² These goals directly impact the social well-being of the elderly themselves.³ However, the elderly remain more sensitive to loss events that cause isolation, loneliness, or psychological stress, anxiety, and even depression, requiring long-term care.⁴

The results of the study conducted by Livana et al that 41.6% of the elderly in Bandengan Village, Kendal Regency experienced mild depression and only 11.5% with severe depression predominantly occurring in male elderly and having no income.⁵ Depression experienced by the elderly can be caused by genetic, biochemical, environmental, and psychological factors, and is triggered by cases of trauma, death of a loved one, difficult circumstances, or stressful conditions, and unclear conditions that cause changes in the elderly including changes in appetite, sleep disorders, anxiety and constant movement, obsessive thoughts of disaster or catastrophe, persistent thoughts about death, suicide, or trying to harm oneself, feelings of uselessness, hopelessness, sudden crying for no apparent reason, irritability, impatience, anger, and aggressive feelings.⁶

The above research is also supported by Taam et al, of the 65.9% of elderly aged 60-74 years who experience depression caused by environmental stress factors, 53.7% and 58.5% lack family support.⁷ The psychogeriatric problems above that must be treated by caregivers in social institutions certainly encounter obstacles, including difficulties in providing comprehensive management from physical to psychological aspects because there are no caregivers who have the knowledge and skills regarding the management of elderly with psychogeriatrics. In addition, the ratio of the number of caregivers to the number of elderly is not appropriate and there is no standard guideline that can facilitate caregivers to be able to provide care for elderly with psychogeriatric problems efficiently and structured.⁸

The lack of caregiving training can have a negative impact on caregivers, as shown by research results that 40% of caregivers have difficulty controlling anger such as shouting and/or losing patience triggered by the inability to adapt to changing roles in caring for elderly people with dementia, and with behavioral changes that occur in elderly people due to their dementia, lack of support or feeling trapped in the situation of caring for elderly people with dementia.⁹

Fulfilling psychogeriatric needs can be done by meeting the spiritual needs of the elderly in the nursing home. The elderly’s need for comfort in maintaining bodily functions can help them face the death process calmly and peacefully. The elderly in the nursing home have a history of non-communicable hereditary diseases and are cared for until they die, whether accompanied by family or not. Research results show that fulfilling spiritual needs helps the elderly overcome fear, find peace of mind and soul, and perform religious rituals.¹⁰ A preliminary study at the Tresna Werdha Budi Mulia 1 Social Home (September 2024) obtained data on the number of elderly or social care residents (WBS) was 250 people (90 male wbs, 160 female wbs), the number of nurses 7 people, 33 social workers (5 S. Sos people, 28 high school people).

Being a caregiver can cause tension, stress, and a sense of burden. This condition then impacts the quality of life. The increased energy expenditure results in reduced rest time, resulting in physical and psychological fatigue.¹¹ Therefore, this study aimed to explore caregivers’ experiences regarding the physical anxiety of elderly people facing death at the Budi Mulia 1 Social Home for the Elderly.

METHODS

Research design

This research was a qualitative study with a phenomenological approach. The method was the phenomenological method. The phenomenon studied in this study was “caregivers’ experiences of elderly anxiety when facing death”.

Time and location of the research

The research was conducted in October 2024 at the Budi Mulia 1 Social Home for the Elderly.

Research subjects

The population in this study were caregivers or companions for the elderly who work at the nursing home. The sampling technique used was purposive sampling, where the researcher selected individuals based on the consideration that they had experience that was relevant to the research objectives. To strengthen the research objectives, the researcher created sample criteria for those who were included as informants.

The inclusion criteria of informants involved in the research include: Care giver who worked at the orphanage, willing to be an informant, care givers who had a history of caring for the elderly until they die at the nursing home during their work, care giver who can speak Indonesian well, care giver was a companion for the elderly during the care period,

The exclusion criteria for informants involved in this study include care givers who work at the orphanage but were on leave or sick.

Data collection was stopped after reaching data saturation. Data saturation was considered to be achieved if the quality of the data generated, the scope of the research, the nature of the phenomenon being studied, and the complexity of the data or information obtained from each informant are satisfactory. Generally, based on previous research, the number of participants reaches saturation at the eighth participant.

RESULTS

The informants in this study were caregivers or those known as WBS companions who worked at the Budi Mulia 1 Tresna Werdha Social Home, consisting of 4 male informants and 4 female informants. The informants’ final education was 2 nurses, 2 bachelors, 2 diploma 3 informants, and 2 high school informants. All informants had an average of more than 5 years of experience assisting the elderly.

The informants’ professions consisted of 4 nurses and 4 social workers. The following are indicators of physical anxiety experienced by the elderly in facing death:

Older adults often complain of pain or physical discomfort

Complaints of pain or physical discomfort reported by older adults or based on observations by informants include shortness of breath, scabs, back pain, dizziness, leg pain, lower back pain, and insomnia. The following are the results of interviews with informants regarding the physical complaints of older adults:

Grandma's condition was short of breath, ... it turned out that when I saw (when I was observing) her condition was no longer good. When I called her, she didn't respond, she was already severely short of breath. (HM)

So, God forbid, my body would get scabs while I was at the guesthouse, a kind of itchy scab. (KY)

One day, my back hurt, sis…it hurt. (EA)

But suddenly you don't (don't) feel well, ... all of a sudden you're white and pale, you ask why Grandma? “don't (don't) feel well”. I just don't (don't) feel well (just)…just a normal headache. (SY)

Leg pain, back pain or dizziness, some people appear restless, some are uncomfortable with their condition, they can't sleep. (RM)

Her complaints were only dizziness, nausea, and decreased consciousness. (EK)

Researchers also found that some informants felt that elderly people were experiencing pain or physical discomfort, but they were unwilling to share their concerns or even felt the complaints were unimportant, such as not wanting to inconvenience the staff. The following are the results of interviews with informants:

Incidentally, these WBS (social welfare residents) are really fine, they’re not sick, maybe they're just sick, it's just not visible. (KY)

…He was healthy from this morning (this) ma’am, suddenly in the afternoon (evening) he was all white… shall we get treatment, grandma? “No (no) need ma’am, he can still walk. It turns out he doesn't want to be a bother or something, it’s really easy. …“he can still walk, he doesn’t (doesn’t) always lie down (always lie down)”. Why is it so different, even though he says he's okay, it's different, like (like) that's not what he looks like. (SY)

He doesn’t feel (doesn’t feel) pain but it's better for him to endure it than to bother (bother) or make other people have to pay attention (pay attention) to him. (EK)

Factors influencing anxiety

One factor influencing elderly anxiety was a lack of family support in preparing housing. The following are the results of interviews with informants:

There is a family, the child is only (only) perhaps because his condition does not allow him to support his mother, due to financial constraints. (HM)

They came here because their child was in prison, because they were abandoned and brought here by the police, at first it was as if they couldn't accept their situation, meaning they kept crying (always crying) "I don't want to, I'm scared, remember my child." Every (every) day they cry (cry), always cry (always cry). What makes them stay is actually because they have no place to go home. (EA)

“I feel like I’ve done something wrong” to the point of expressing myself that I want to commit suicide. “I want to kill myself, sis (sister), but if I don’t put you in here, where will I live? I don’t have a place to live.” (SY)

Several other informants argued that older adults have a strong motivation and desire to meet or live with their children and families, but there was resistance from children and families because the elderly were not recognized as parents, rejected by in-laws, children who live in other cities or regions, children and families who cannot be contacted by officers. The following are the results of interviews with informants:

But (but) I see that (if) to his child it's not (it’s not)… but (but) it's like (like) normal like that (like that) for his child there's no feeling that he should, “okay nurse, this (this) can be taken care of, I’ll take (bring) him home, this illness is like this (like this) it's only once in a lifetime to take care of him (take care of him), yes because the comfortable place for him is in his own family”. sometimes the phone is not picked up, maybe he’s busy. (HM)

I often hear from WBS who still have their own money, such as beggars and scavengers. They have children, but they work as scavengers, beggars, get money, eat whatever they want, but there’s nothing they can do here that makes money, so they get bored, they feel restricted. Most of the problems are with the in-laws here, most of whom don’t accept them. (IN)

So he has a son who is married and has grandchildren, maybe his son is willing to accept him but his son-in-law is different, so he sometimes cries like that (cries like that), when he cries (cries) he says like this (talks like this) “Oh God, I have a child, I have taken care of him since he was little, why is it that when I’m old, why isn’t my son taking care of me? I have an adopted child but he doesn’t want to be with me anymore”. (KY)

What keeps them going is actually... Sometimes they want to leave “I want to go home and see me”. (EA)

Actually, there is a child too, but (only) the child has let go (doesn’t want to take care of it), there’s no news. Initially, he came here with the status of a distant relative and nephew, but (but) after being investigated, it turned out to be his child. “I don’t (don’t) have the right to take care of him because he's only a nephew”. After being investigated by social workers (orphanage staff/social workers), it turned out to be his child. “Oh, why is his child like that? Why do you really want to meet your nephew, but (but) it turns out that he”s his child”. (MW)

I was once visited by a neighbor (met an elderly neighbor) “if anything happens to this grandmother (grandmother) I'll contact her mother, okay?” “If anything happens to this grandmother (grandmother), please contact me because her children are out of town (a different city from where the elderly person lives)”. No one visited at all. It turns out that when her condition dropped, perhaps this grandmother wanted to convey something to her neighbor, but I couldn't contact her neighbor, her number (cell phone contact number) was no longer active, not long after her grandmother died. (SY)

What I observed was that the comorbidities of the elderly are not their illnesses. What I observed during my time here were their families. “Why am I in the orphanage? Why am I not with my own family? I didn’t expect to end up here. I wandered around following my children, and now I’m here. What about my children?” (RM)

From getting attention to not getting it, it can weaken his mental state, to the point where he wonders why his children would only pay attention to him if he had money. (EK)

Seniors express concerns

Elderly people express concerns that are categorized as adaptive, such as telling stories and always wanting to be clean. The following are the results of interviews with informants:

…confide (pour out one’s heart or tell a story) with the officer… (KY)

The Wbs (social welfare resident) is diligent in worship so he wants (wants) to be clean, so every uh… (talking stops) at 12 o’clock he asks for his wound to be cleaned, because he has a lot of pus, if he calls that (if he calls that) “neng…” it’s definitely at 12 o’clock whether he wants to eat. … like he wants to take a shower even though with total care usually at 12 o’clock he wants (wants) to pray. He only asks to be cleaned and the bandage changed (only) but (but) this one asks for a bath (bath) neng (while holding back tears, soft voice, no eye contact, looking down, looks sad). He also might have been clean but (only) had shortness of breath for a moment and then died. (MW)

Elderly people express concerns that are categorized as maladaptive, including daydreaming, crying and restlessness, aversion to touch, sadness, and depression. The following are the results of interviews with informants:

Daydreaming… so he sometimes cries like that (cries like that) oh my God I have a child… (KY)

At first it was like he couldn’t accept the situation, meaning he was always crying (always crying), I don’t (don't) want to, I’m scared, I remember my child. Crying every (crying every) day, always crying (always crying). “Miss, don't touch his body, it hurts”, maybe it feels hot, don't touch him, do you want to lift his waist? “Don't (hold him, he screams it hurts)”. (EA)

Crying nervously like (like) something he doesn’t (doesn’t) usually do…(MW)

I’m sad because my child has been left behind, whether it’s death or something else. Eventually, he’ll just be sad. He’ll be depressed because the more he thinks about it, the deeper his sadness becomes. He’ll become stressed, which will only make him even more depressed. (RM)

Chronic illness or health conditions that worsen elderly anxiety

Chronic diseases or health conditions that exacerbate anxiety in the elderly are categorized as cardiovascular diseases, namely heart disease and hypertension. The following are the results of interviews with informants:

Heart disease, hypertension too, … finally he (that) had been sick … (HM)

Sick … hypertension …(EA)

Comorbidities include hypertension, ... (RM)

His history is..., hypertension, he never (never) abstains from food. (OAK)

Several informants reported that chronic illnesses or health conditions that exacerbate elderly anxiety are categorized as metabolic diseases, such as diabetes mellitus and diabetic ulcers. The following are the results of interviews with informants:

His blood sugar was high and it spread to his eyes. He couldn’t see, the social worker was so stubborn that he couldn’t see for a long time. I asked the nurse, “Why is this?” The nurse said it was because of his diabetes. (KY)

Sick … sugar, hypertension, … (EA)

There’s something like a wound on the buttocks (buttocks) and then (continue) on the buttocks like that (like that) because there’s a wound, it’s uncomfortable, ma'am, lying down, sugar (MW)

His condition was already suffering from DM (diabetes mellitus) and he was treated but the condition of his injured leg got worse (SY)

The comorbidities include hypertension, diabetes (diabetes mellitus), … (RM)

His history is sugar, hypertension, he never (never) abstains from food (EK)

Researchers also found chronic illnesses that exacerbate elderly anxiety, such as gout, cholesterol, calcification, gallstones, spinal and lumbar immobility, and tuberculosis. The following are the results of interviews with informants:

The one here is chronic like TB (tuberculosis), there are no previous mental health cases (IN)

Gallstones, leg ulcers and diabetes, hypertension, difficulty moving the spine and waist (EA)

The comorbidities include hypertension, diabetes, gout, cholesterol, calcification (RM)

Elderly response to medical care

The elderly’s response to medical care was categorized as still willing to undergo check-ups and be treated by staff but not going to the hospital. The following are the results of interviews with informants:

Every month we check at the heart clinic, we were treated at Duren Sawit Hospital (HM)

But after being treated, he recovered in just a week (one week), the next morning I bathed him, when I moved him to the wheelchair it turned out he had died (KY)

From the hospital, there was no change, in fact he couldn’t walk, two weeks later it was discovered that he had gallbladder disease. In fact, he didn’t want to be taken to the hospital, he wanted to be accompanied. Maybe he already considered us his family when he was alone in the hospital (EA)

He wants to be clean so every time... but if he can get this illness treated (MW)

I thought it was normal because he liked to go for walks, but I observed that he still ate and drank voraciously, and after eating he would sleep, which was unusual for him to want to sleep. When I woke him up in the afternoon for dinner, he wouldn’t wake up again. I referred him to the hospital. He was physically fine, but we don't know what was going on inside. We can’t intervene here without the approval of the Community Health Center (RM).

Yes, just for fun, what else can I do, I’ll die soon, so I'll just enjoy it while I’m in the orphanage. Come on, you don’t have to go to the trouble of taking me for check-ups, taking care of me, I’ll die soon, and no one thinks about me anymore, my children and wife don’t know about this either (EK).

DISCUSSION

Anxiety in the elderly as they approach death is often related to various psychological and physical factors. They may experience anxiety, fear, and sadness related to death and the aging process. Furthermore, physical complaints that often arise in the elderly can exacerbate their emotional state. Common physical complaints in the elderly include respiratory problems such as lung disease or heart conditions, which can make them feel suffocated or have difficulty breathing.¹² Interviews revealed that the elderly have several physical complaints, including dizziness and back pain. Dizziness or vertigo is often experienced by the elderly and can be caused by several factors, such as balance problems due to decreased vestibular function due to aging, low blood pressure, which can be caused by rapid changes in position that suddenly lower blood pressure, dehydration, and side effects of medication.¹³ Back pain is a common complaint caused by arthritis, which is joint inflammation that causes pain in the lower back area, disc degeneration, sprains or injuries caused by excessive activity or injury, and osteoporosis, which is a decrease in bone density.¹⁴

Interviews revealed that factors influencing physical anxiety in the elderly include the inability to live with children and family due to homelessness, being disowned as parents, being rejected by in-laws, living in a different city, and being disconnected from family. Elderly individuals living in nursing homes tend to experience limitations in establishing warm emotional relationships, especially when far from children and family. This can lead to chronic stress that impacts physical conditions such as fatigue, sleep disturbances, and decreased immunity. The absence of family can lead to feelings of abandonment, triggering existential and physical anxiety such as psychosomatic pain and high blood pressure. Nursing homes offer care facilities, but these cannot replace the emotional comfort of home. Therefore, this can increase the physical burden on the elderly, such as anxiety, loss of appetite, and decreased organ function. Many elderly individuals still harbor a desire to spend their old age with their children and family. If unfulfilled, this hope can become an emotional burden and affect physical conditions, such as physical complaints that have no clinical cause. Elderly individuals living in nursing homes expressed a desire to live with their children in a family environment because they feel calmer and physically healthier.¹⁶

Elderly people face various emotional challenges nearing the end of life, especially when living away from family or in a nursing home. The anxiety they feel is often expressed through two mechanisms: adaptive and maladaptive. Interviews revealed that elderly people express anxiety through adaptive methods, including storytelling and a constant desire to be clean, and maladaptive methods, such as daydreaming, crying and feeling anxious, not wanting to be touched, feeling sad, and feeling depressed. Adaptive expressions are positive and constructive ways to cope with anxiety. Adaptive expressions include storytelling or venting; elderly people tend to want to talk about their past, family, or hopes as a form of emotional release; maintaining personal and environmental hygiene is a desire to always be clean, which can be a form of self-control when feeling powerless and can calm oneself. Maladaptive expressions are negative responses to stress or anxiety that are unproductive and can worsen the psychological or physical condition of elderly people. Maladaptive expressions include daydreaming as an escape from reality, which, if excessive, can be an early sign of mild depression. Crying and restlessness are often direct expressions of emotional distress, especially when older adults feel isolated or misunderstood; not wanting to be touched or interacted with is a rejection of touch or communication, indicating social withdrawal as a form of self-protection against emotional injury; prolonged sadness and depression tend to lead to decreased motivation and physical condition, thus impacting quality of life.¹⁸

Elderly people are at high risk of developing various chronic diseases, which not only impact physical health but also exacerbate psychological conditions, including anxiety, worry, and even depression. Interviews revealed that chronic diseases or health conditions that exacerbate anxiety in the elderly include diabetes mellitus, hypertension, tumors, tuberculosis, gallstones, gout, cholesterol, and calcification. Diabetes in the elderly requires strict and ongoing management. The inability to regulate blood sugar and long-term complications such as neuropathy lead to fear, anxiety, and dependency. Uncontrolled hypertension can lead to complications such as stroke and heart failure. Elderly people with hypertension often feel anxious about their condition, especially regarding the numerous medications they must take.¹⁹ A diagnosis of a tumor or cancer can cause severe psychological stress due to concerns about mortality, the effects of treatment, and the financial burden. Elderly people with cancer often exhibit symptoms of severe anxiety and sleep disturbances. Tuberculosis in the elderly often leads to social isolation due to the stigma of the disease, as well as prolonged fatigue that makes it impossible to carry out daily activities. This increases feelings of helplessness and anxiety. Sudden back pain due to gallstones and treatment that sometimes requires surgery are causes of stress and fear in the elderly. Gout-related joint pain can lead to impaired mobility, leading to feelings of independence and frustration. High cholesterol increases the risk of heart disease. Fear of a sudden heart attack can trigger anxiety. Osteoarthritis can hinder daily physical activity. Elderly individuals feel a loss of independence and a burden, leading to feelings of sadness and anxiety.

Elderly people generally have a good understanding of the importance of medical care, including regular check-ups, taking medication, and maintaining a healthy lifestyle. However, there is a tendency to refuse hospitalization or inpatient care. This phenomenon is influenced by various physical, psychological, and social factors. Interview results showed that the elderly’s response to medical care is willing to have check-ups and be treated but not to go to the hospital. Elderly people tend to be more compliant with medical check-ups because they recognize the importance of maintaining a stable health condition, feel more comfortable with outpatient care because they still have control over daily activities, and want to avoid complications of chronic diseases. Despite complying with medical check-ups, many elderly people refuse hospitalization due to anxiety about hospitals, including fear of invasive medical procedures; previous trauma, longing for their home environment, the stigma of hospitals as a “final destination”, and fear of being an emotional burden on others.

A limitation of this study is the caregivers’ limited educational background and training experience, which, when explored, revealed their therapeutic communication skills in responding to the researcher’s intentions, appeared unsystematic. Therefore, repeated verification of the information conveyed is necessary.

CONCLUSION

Caregivers, as companions to the elderly, spend the most time with the elderly during their life and during their care at the nursing home. Caregivers’ experiences uncovered five themes regarding the physical concerns of the elderly facing death: 1) physical discomfort, 2) factors influencing physical concerns, 3) adaptive ways of expressing concerns, 4) exacerbating chronic illnesses, and 5) responses to medical care. Therefore, caregivers need to improve their ability to identify physical and psychosocial complaints in the elderly and receive training in meeting the physical and psychosocial needs of the elderly living in nursing homes.

ACKNOWLEDGEMENTS

The researchers would like to thank the team, especially the Indonesian Christian University, for providing the opportunity to conduct this research. They also thank the Jakarta Provincial Social Services Office and the Budi Mulia 1 Social Home for the Elderly and the Tresna Werdha for providing this research location.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: The study was approved by the Institutional Ethics Committee

REFERENCES

1. 1. Festy P. Textbook for the Elderly “Elderly, Perspectives and Problems”. Surabaya: UM Surabaya; 2018.
2. 2. Muhith A, Siyoto S. Gerontic Nursing Education. CV. Andi Offset, Yogyakarta; 2016.
3. 3. Ihromi TO. An anthology of family sociology. Jakarta: Obor Indonesia Foundation; 1999
4. 4. Nova Y, Titin A, Tuti UA. Family burden in the elderly with chronic illness. Central Java: PT Nasya Expanding Management; 2023.
5. 5. Livana PH, Yulia S, Lestari DE. Overview of depression levels in the elderly. Nurscope J Nurs Sci Think. 2018;4(4):80-93.
6. 6. Hendry I. Depressive Disorders in the Elderly. CDK-210. 2013;40(11).
7. 7. Taam U, Nurjannah, Bau Syukur. Causes of Depression in the Elderly at the Minaula Werdha Social Home, MKMI Journal, Vol. 13(1), 2017. https://journal.unhas.ac.id/index.php/mkmi/article.
8. 8. Rita WH, Nurullya R, Elis H. Art therapy as an effort to manage psychogeriatrics in nursing homes in Semarang city. J Community Serv Empower. 2018;2(2).
9. 9. Abdulah M, Lismayanti L, Falah M. The effect of remiscene therapy on anxiety levels in the elderly with hypertension. Healthcare Nurs J. 2022;4(2):368-73.
10. 10. Setianingsih S, Lestari DE, Rina A. An overview of fulfilling the spiritual needs of the elderly approaching death from the perspective of caregivers at the Kendal Elderly Social Services Center. Ventil J J Health Nurs Re. 2023;1(4).
11. 11. Windy F, Bunga WP. Caregiver for schizophrenic clients. Bantul: CV. Mitra Edukasi Negeri; 2022.
12. 12. Kogan MD, Hays RD. The relationship between emotional distress and physical symptoms in elderly patients. J Am Geriatr Soc. 1993.
13. 13. Bharucha, AE, et al. “Geriatric assessment in geriatric medicine: the American Journal of Medicine, 2015, 128(2), 106-114.
14. 14. Cameron, KL, et al. “The role of musculoskeletal disorders in the onset of disability in older adults: the Journal of Aging Research, 2015;1-12.
15. 15. Wahyuni, S. The Effect of Social Isolation on the Physical Health of the Elderly in the Tresna Werdha Social Home. Indones Nurs J. 2018;12(2):134-41.
16. 16. Nuraeni D, Fauziah E. The desire of the elderly to live with family and its impact on health. J Geriatr Gerontol. 2021;5(3):65-72.
17. 17. Marlina, R. Emotional needs of the elderly and their adaptive responses in nursing homes. J Nurs. 2019;7(1):23-30.
18. 18. Astuti L, Firmansyah R. Emotional expression of the elderly in nursing homes: a psychological review. Indones J Geriatr. 2021;9(3):102-10.
19. 19. Kurniawan H. Mental health of elderly people with diabetes mellitus. J Nutr Health. 2020;12(1):47-53.
20. 20. Lestari P, Wahyuni D. Physical limitations and their impact on the mental health of the elderly. J Clin Psychol. 2018;7(1):44-50.
21. 21. Fitriyani R. Factors influencing elderly compliance in undergoing routine care. J Nurs. 2020;8(1):55-62.