It is common knowledge today that we live longer than ever before because of science and technology. However, this trend of longevity comes with numerous strains on our society and the elderly. It is common knowledge too that this process of aging culminates
into degenerative changes in our physical and psychological well being. As people age, they depend more heavily on assistance from technological devices and caregivers to perform activities of daily living. Studies done by Chappell, Strain, and Blandford (1986) found that both the number of chronic conditions and the extent of functional disability increased with age.
Equally important, Statistics Canada (1990b) supported this notion by revealing that the disability rate is tied to age and that it increases with an increase with age. The fact that more people are getting older in this era that before means that a larger portion of our population have some sort of limitations or some kind of disability that affects their ability to be fully functional in day to day life.
Functional disability is defined by Chappell, Strain, and Blandford (1986) as “a functional limitation on the performance of normal daily role activities as a result of illness or injury.” In order to cope with their inability to perform activities of daily living, the elderly in need of assistance have devised means of survival by adapting to assistive devices like hearing aids and wheelchairs. This term “activities of daily living” as discussed here refers to a basic set of everyday activities or tasks that an individual should be able to perform in order to live independently (Katz, 1963; Weiner, 1990). In order for us to understand the challenges the elderly pass through on daily basis to overcome their limitations, we need a fact finding project with an individual facing such challenges in performing his or her basic activities of daily living, for us to appreciate this topic.
I had an opportunity to perform a semi-structured interview with Mrs. Joyce Wealth (fictitious name), a 83 year old resident of a reputable long-term care center in Hamilton, Ontario. The purpose is to investigate and identify how Joyce copes with her physical impairment and pain associated with a stroke (CVA) and other conditions she has and how her coping strategies have made her aging successful. In this paper, I will attempt to discuss the results of this interview with emphasis on how research could be influenced by these results and how we can borrow a leaf from Joyce’s book to prepare for our own old age.
Joyce a widow with two daughters, suffered from a stroke six years ago which increased on her inability to perform daily activities by living her with limited use of her left side of her body. She suffered from considerable depression and nursed feelings of frustration, anxiety, anger and apathy. She as a result disengaged herself from the world and become isolated. “I wished then why nobody could speak to me as they used to and yet hated to see them sympathizing with me” she lamented. “Few people realize how the shock of this sudden change affects one psychologically. You feel like God should have done you a favor by letting you die.” At the time both her daughters worked and lived outside Canada and were unable to be of effective help to her, thus increasing on the obvious risk to her of not being able to solicit or receive adequate assistance that she needed in basic maintenance activities. Coupled with arthritis and other contributing factors, Joyce agreed to move to a long-term care facility four years ago.
Whilst talking to her, I noticed that she had a cognitive competence of a younger person. Despite her disabilities, Joyce’s mental faculties were sound in relation to her biological age and aging perceptions. With all those bouts of depression, crying and overwhelming fatigue, Joyce’s thought process was not impaired. During the course of the interview we were interrupted by a phone call where she exhibited her ability to perform some instrumental activities of daily living by picking up the phone and talking to the extent of passing over her daughter’s telephone number and the day of the week to the caller without checking her directory or calendar. She is thankful for some assistive devices that make it easier for her to tackle mobility problems that would have otherwise limited her ability to go shopping. “The girls in the Activation and Restorative Department take us out every Saturday to different malls to shop. I am thankful for the motorized wheelchair I have and for the girls for letting us choose what we want to buy.” She said. Joyce’s attitude towards assistive devices seem to be in conformity with studies by Hirdes and Forbes (1993), that suggests that older people usually adapt to changes in life by adjusting their expectations and activities. But perhaps Cott and Gignac (1999) agreed with her more when they suggested that people with activity limitations used methods to cope with their deficiencies.
Whereas successful aging maybe gauged differently in professional circles, Joyce’s case scenario gives me a different perspective of this term simply because of her willingness to try and cope with her physical deficiencies. Activities of daily living that include personal care (toileting, eating/drinking, dressing, bathing), and mobility that seem automatic to us are predominantly a problem for people with motor deficits like Joyce. However, Joyce’s attitude towards her challenges is refreshing most especially when she easily adjusts to ever changing situations by not hesitating to utilize various assistive technologies to help facilitate these activities. In my opinion, a disabled elderly who looks at the future as bright and tries to promote self worth, independence and quality of life with satisfaction has aged successfully. Rowe and Kahn (1991) described low chance of disease and disability; high mental and physical functioning; and active participation in social activities as the three signs of successful aging. But like Thompson and Forbes (1990) said, and basing my argument on Joyce’s enthusiasm and desire to avoid further decline, deterioration should not be part of aging. Baltes (1993), recognizes that the cognitive effectiveness which is necessary in maintaining the daily activities associated with overall health is a significant part of aging. Joyce seems to lead a effective life by utilizing her self management skills and practical knowledge to compensate for physical losses which fits well with aging well.
When I asked Joyce how she could have been successful in performing instrumental activities of daily living as observed earlier, she attributed it to her insistence on simple exercises with the physiotherapist assistants in the home and an open realistic mind towards her situation. She manages to walk short distances like to the washroom with her walker and with assistance from a caregiver. However, Joyce reiterates that sometimes the caregivers may respond to her call bells late causing incontinence at night which frustrates her. To solve this, Joyce agreed to some interventions like a bedside commode and a bedpan to reduce on consequences of waiting for help and walking to the washroom at night, protective bedding and use of briefs which would have been degrading to any of us. With such assistive devices/interventions, Joyce is able to enjoy continuity in her quality of life by performing some activities by herself in a non threatening atmosphere.
Physical disability has not stopped Joyce from promoting her own independence. She talked of the trouble she goes through trying to dress herself without assistance, and how she struggles to feed herself at every meal, tasks that need utmost coordination to complete. Several times Joyce has acquired injuries from falls whilst trying to dress herself or walk to the washroom not because she has lost the ability to evaluate consequences of such risks she takes but because she has a positive attitude towards her life and is willing to commit her energy to doing things herself for her to live a fuller life. The long-term care home she resides in decided to help her meet her objectives. She says that her environment has been altered for her safety. Floor mats have been removed from her washroom and brightened up her room with fluorescent lighting to help her make better judgments while walking.
“I am so happy that I did not sit down and wait to die the moment I realized my fingers could not coordinate properly with my hands to comb my hair the way I would like.” If Joyce had been caught up in such a state of despair, she would probably have resigned herself to her room in isolation away from family and friends because of frustration and embarrassment like it was immediately, just like it was immediately after the stroke. Today she makes it a point to attend all social gatherings and activities in the nursing home. She knows that a strong social support network of friends and family members is a very important contributor to good health in old age. Rowe and Kahn (1998) found that a strong social support network can buffer or reduce some of the effects of aging. Joyce has company every time from her brother, sisters, members of her church, friends and daughters. This keeps her motivated to live since it makes her feel appreciated.
Joyce recounts that “While in hospital, I remember asking a doctor if I will ever be normal again? His response still rings in my ears, that if I worked harder on exercises and on my positive attitude, I’ll get back.” With all that work she put in to cope with the effects of the stroke, she soon got out of bed to a wheelchair and now to a walker for short distances. Her motivation, she says, is that she will one day walk again.
However, Joyce’s rehabilitative exercises on how to use her right side of the body to compensate for the disabled left were not enough in itself. She recalls that her family and friends played a huge role as mentioned before. “My friends and family encouraged me and believed in me. It strengthened me to know that they loved me and were there for me.” All this social support that provides patience, kindness, understanding and affection provided Joyce with a secure emotional environment to reach her goals.
In final analysis, my conversation with Mrs. Joyce Wealth was extremely insightful and enlightening on many aspects of coping with physical limitations in later life. Talking to Joyce brought a realization to me that the concept of successful aging based on non-medical approach to promote human well-being is particularly fundamental to increasing quality of life. By providing a universal understanding of the aging experiences that encompasses limitations to the performing of activities of daily living, this interview identified and agreed with the notion that the elderly can find ways to compensate for their disabilities and other limitations in order to enjoy a successful later life. It is therefore important to learn from Joyce’s school of thought and accept changes that come with aging or other misfortunes by adapting and using alternative devices to cope with these changes. Joyce embraced assistive devices, jumped onto the exercise bandwagon and surrounded herself with a supportive social network of friends, family and health caregivers in order for her to achieve quality of life. The bottom line is that quality of life is the ultimate goal of everybody both young and old.
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An Interview with Joyce Wealth; Coping with a Disability in Old Age
Hopes Kikonyogo interviewing Joyce Wealth on 7th November, 2005 lasted approximately 60 minutes. It was conducted in the activity room of a long-term care center in Hamilton, Ontario. Audio data from the interview was recorded on a digital recording device and later used to generate post interview notes for this paper. To preserve privacy the actual names of the lady interviewed and the name of the long-term care center were not used.
The interview is intended to highlight Joyce’s coping strategies with a disability that hindered her ability to perform activities of daily living. Through her experiences we hope to understand the survival instincts of humans in later years.
HK: Joyce, thank you for agreeing to this interview. First, can you tell us a little bit
Joyce: I was born in 1922 to a Ukrainian family. My father was a physician and my
mother a nursery school teacher. After school I married an English soldier and
we moved to Canada after the war. In Canada, my husband, Henry became a
physician and I became a secretary. Later after further studies, I was promoted to
office administrator in Henry’s medical office. He died 15 years later of cancer.
HK: Did you and Henry have children?
Joyce: Oh, yes. I am ashamed I did not mention them. I have two girls, Marilyn and Bertha. Marilyn is a Chief Economist with the International Monetary Fund (IMF) somewhere south of the border and Bertha a Political analyst and part time lecturer at one of the east coast universities in USA. I am proud of my daughters and their achievements are a satisfaction in my life. I do not see them that often though, but we talk quite a lot on telephone. Once in a while I get to watch Bertha on news networks like CNN, sharing her opinions with the world. I am a proud mother.
HK: Let us focus on your disabilities for a moment here. How did you end up in this situation? The disabilities and living in a long-term care center?
Joyce: I suffered from a stroke in 1999. It caught me completely unaware, one moment I was fine preparing to go to church, the next moment I had this awful headache, a fuzzy feeling over my eyes and general weakness of my body. Luckily enough, Bertha was visiting with me, and rushed me to hospital. A stroke interrupted my good life and changed it probably for good. I was in hospital confused, physically mmmh, crippled and speechless. That feeling is horrible, I mean, it is horrible to feel powerless and hopeless over yourself. Anyway, I stayed in hospital and various rehabilitation centers for 2 years, I think, before being discharged to a nursing home.
HK: How did you feel about coming to a nursing home?
Joyce: I really had no option, I could hardly care for myself and could not afford 24/7 home care. My daughters did not live in the country and even if they did, it would have been so stressful for them to run my home and theirs. I had thought hard about this before taking up this chance. Truthfully my first year of living with the effects of a stroke was my lowest. I was so depressed, refused to take any calls from my family and friends; I often pretended to be asleep when someone visited with me. I had totally cut off the world, feeling frustrated and embarrassed, but somehow with the persistence of my church, daughters and friends I agreed to therapies that have helped in my recovering journey.
HK: What state of mind were you in the aftermaths of the stroke? I mean did you feel like you had lost your cognitive awareness?
Joyce: I was disabled after the stroke. I could hardly do even the simplest things you know of like using my left hand to touch and feel, because my left side of the body was paralyzed. I could not feed myself, unable to write, dress myself and so many other things we do take for granted. I leant that feeding oneself requires a lot of coordination. One thing I did not lose though, thank God, was my ability to think, judge and make my own decisions. Having all your mental faculties in order when you cannot perform the simplest of activities is a recipe for depression, embarrassment and frustration. A few people realize how the shock of this sudden change affects one psychologically. You feel like God should have done you a favor by letting you die than living you with disabilities.
HK: Earlier you mentioned about self isolation, disengaging yourself from friends and family. Why was that?
Joyce: Hard to understand, but at that time you figure death is the best thing for you. Apart from that, you feel so embarrassed and angry at your friends and family when they feel sorry for you. It seems like they all talk to you like you are a toddler. People often avoided contact with me because they figured I could not hold a normal conversation with them. I wished they could talk to me like they used to and at the same time hated to see them sympathize with me.
HK: Joyce, after such a low period in your life, what motivated you to turn around your life?
Joyce: While in hospital. I recall asking a doctor if I will ever be normal again. His response still rings in my ears, that if I worked harder on exercises and on my positive attitude, I’ll be back. Rehabilitation therapists often asked some stroke survivors to come and visit with me, which encouraged me. I realized then that I can live if I wanted to, that my rehabilitation was in my hands. Up to today, I still wonder how I managed to turn that corner. Look, I toiled and found strength to get out of bed, I started using a wheelchair. That in itself was a milestone in my struggle to recover, but still believe it is not good enough. Today, I so often use my walker to walk for short distances like to my washroom and to the dining room with the help of caregivers. It is a challenge and so exhausting.
HK: I have just noticed you answering your phone without assistance. How could you have been successful in performing such a task?
Joyce: Keeping active is the key, if I had remained idle without purposeful activity to help in my rehabilitation, my goals would have been undermined. I happen to do simple exercises at least everyday with Mary the physiotherapist assistant in this home. I also harbor a positive mind towards my life because I have moved on. I read a lot and keep my mind active. All that is not easy, most especially if one is recovering from a stroke and has arthritis as well, like I do. I am so happy that I did not sit down and wait to die the moment I realized my fingers could not coordinate properly with my left hand to comb my hair the way I want it.
HK: What would you like to be changed in this nursing home, anything that would further your goal of recovery?
Joyce: if I had my way it would be a day or two coming up with stuff that needs to be changed, but we are all humans thus seldom perfect. I am contented with what this home offers. There is care, very good care here but one thing that has been frustrating is the response by caregivers to call bells. They often respond to my call bells late and by the time one is here, I have soiled my pants or wet my bed. Just yesterday, I brought this call bell issue up during my care conference and agreed to management’s proposal of a bedside commode, bedpan and usage of briefs. It is an inconvenience and embarrassing, but at least it solved a problem or two.
HK: By the way, are there certain things you can do for yourself?
Joyce: Oh sure, I do my own shopping, which is a thrill because I was a ‘shoppaholic.’ The girls from the Activation and Restorative department take us out every Saturday to different malls for shopping. I am thankful for the motorized wheelchair I use and for the girls that not only take us out but also let us choose what we want to buy. I am thankful for all the devices that enable me to continue with life in a fulfilling way. Apart from the shopping, I try to toilet myself, try to walk myself to the washroom and to the dining room, dress myself and feed myself. However I have paid for taking such bold risks. I have acquired bruises and injuries from falls, but now my room is as bright as day light because of those fluorescent lights that help eliminate shadows, they also removed my floor mats in the washroom to avoid tripping.
HK: Finally Joyce, do you have anything else to say? Is there something important to you that I missed?
Joyce: Yeah, I appreciate all I have today which is life. I am particularly thankful for all the care I have received. The caregivers here though over worked and always understaffed remain pleasant and helpful. I thank my family and my friends that encouraged me and believed in me. It strengthened me to know that they loved me and were there for me.
HK: Exploring your coping skills with the effects of a stroke has been very informative. I have enjoyed talking to you Joyce and particularly thankful for your willingness to share your experiences with us. Thank you.