Managing changing abilities

Today we are living longer and healthier and are economically better off than previous generations. As we age, however, we tend to experience more chronic conditions such as diabetes, arthritis, Alzheimer’s disease, dementia, Parkinson’s disease, cardiovascular disease, depression, vision problems and osteoporosis.

Chronic diseases are physical and/or psychological conditions that are long lasting, requiring ongoing medical care. They negatively impact our health, mobility, and performance of daily activities such as dressing, toileting and bathing, and quality of life.

One out of three of Canadians have at least one chronic health condition (Health Council of Canada, 2007). In Toronto, 46% of seniors had multiple chronic conditions in 2013/14. These figures will likely increase, given that the number of Canadians over the age of 65 is expected to rise from 4.2 million in 2005 to 9.8 million by 2036.

A diagnosis of a chronic illness can be difficult to cope with, and may mean we need to consider some major life changes. Unfortunately, our cities, neighbourhoods and homes were not always designed with our changing bodies in mind. But with the right supports, modifications and tools, we can take charge and manage the disease instead of letting it rule us.

What are some effects of a chronic illness that I might experience?

When ill with an acute illness such as the flu, we know that we will feel better and our life will get back to normal within a short period of time. A chronic illness is different. It may never go away and can disrupt our life and our family’s life in a number of ways.

We might experience bodily changes such as pain, fatigue, morning stiffness, and other physical limitations that limit our mobility and ability to engage in daily activities. Changes in mobility can also increase our risk of falling.

A chronic condition may require us to use more energy and time to complete everyday tasks like showering and getting dressed. It might challenge our ability to live an independent life. We might also need to call on our loved ones or home healthcare providers for help with these daily tasks. There is no shame in asking for help. We all need help for different tasks at different times across our life course.

These changes can negatively influence the way we see ourselves. Having to pay out of pocket for health services, such as additional home care or special equipment can impact our finances. Chronic conditions are often accompanied with emotional challenges. The life changes that happen with a chronic illness might make us feel like we are losing control, and anxious and uncertain about the future. Stress can build up leading to feelings of anger, hopelessness and depression. When we do not feel good about ourselves, we might even want to be alone and withdraw from friends and family.

The effects of chronic illness are not limited to ourselves. A chronic illness also has the potential to change our family members’ roles and routines. Their emotions may be on a continuous roller-coaster ride. On the other hand, families may come together and grow closer. Their lives may take on new meaning. They may find rewards they had not expected on their journey through illness.

These changes might have us grieving for our old self, our old body, that now we feel is lost. To cope and return to live a fulfilling, rich and active life, will require us to re-learn about our body, ourselves and our lives.

How does occupational therapy benefit a person with a chronic disease?

 What occupational therapists really want is for you to be able to live your life as normally as possible; to live it the way you want to. My occupational therapist talked to me like a real human being who matters. I had no idea she would help me in so many ways.

– Sam Aweida

Occupational therapists are skilled at collaborative problem-solving with people on ways to manage the daily impacts of their chronic conditions. This may include pain management, finding the right balance of physical activity, or learning to do everyday tasks in new ways or with new tools and assistive technologies. In the long term, occupational therapy can enhance our sense of well-being and quality of life and reduce the effects of disability.

The goals of occupational therapy will depend on the nature and course of our specific condition.

Self-management

An important part of managing a chronic condition is learning specific health-management skills. We may be required to monitor our blood pressure or blood sugar levels, shop and prepare meals according to our nutritional requirements, administer medications orally or through injections, or increase or maintain our physical activity. If people do not follow instructions to complete these tasks consistently and correctly, their condition can become work which can lead to adverse events and hospitalizations.

Beyond following medical advice though, there are many strategies that people may find helpful to stay well even when they are living with a chronic condition.

Occupational therapists can help us take charge of our life and manage our condition by supporting us to manage our own health. They examine barriers and our roles that interfere with our ability to make changes or integrate behaviours that are needed to successfully manage our conditions. They make recommendations to overcome these barriers and incorporate them into our existing routine. More specifically, occupational therapists may:

• assess barriers, such as limited physical capacity or poor memory, that may prevent us from adhering to our medication regimen. They provide recommendations for environmental and personal supports to optimize our medication management and adherence. This might involve helping us set up a schedule and reminder system that lets us know when to take our medications.
• help us develop a “going out” routine for monitoring our blood glucose should we be diabetic and are embarrassed to do this when out with friends.
• provide us with knowledge on nutrition, exercise, medication management, coping skills, daily living skills, and skills for overall wellness.
• suggest simple strategies to help people manage their fatigue. For example, setting a schedule of activities a few days in advance can help people to balance the need to be active with the need to rest and recover.
• help us manage challenging emotions including strategies like relaxation and breathing techniques
• Identify ways to prevent injury especially falls following a home safety assessment. For example, recommendations for home modifications, training in the use of walking aids and home exercise programs
• support our efforts to include healthier behaviours in our day-to-day lives in order to prevent disability and keep us out of hospital so that we can live securely and comfortably in our own homes.

Occupational therapists may also problem-solve with us on ways to manage fatigue, reduce or prevent pain, or simplify an activity. They may also:

• Suggest ways to manage fatigue through saving energy or changing our activities, so we have the energy left over to spend on what matters most to us.
• Consult with us on ways to plan our days so we can manage symptoms while accomplishing our daily tasks.
• Demonstrate the use of adaptive or “assistive” devices that can help us with dressing, getting in and out of a shower or bathtub safely, use our computers to access the internet, prepare a meal, or go outside for a walk

Self-management: Changing thinking and behaviours related to health maintenance

Occupational therapists work with us to take charge of our own care so we can continue to engage with our friends and family and contribute to our communities in ways that are important to us. They are trained in methods for managing stress and coping with unexpected health changes and suggesting  lifestyle adaptations that better support our physical and psychosocial health and well-being.

It was a warm spring day and a perfect time for a walk in the park. While taking in the sun on a park bench, an older woman using a power wheelchair came up to me, and with much enthusiasm, smiled and said, ‘I know you, you’re the one who said I could do it, you gave me hope!’

It took me a moment, but then I recalled how I knew her. At the time, years ago, she was a woman in later middle age. She had had a stroke and was referred to the geriatric day hospital where I worked. I recalled her eagerness to move from a temporary living situation to her own apartment, but she was uncertain how she would manage. I don’t remember the details of my time with her, but I do remember our work together on figuring out her community mobility needs as well as necessary adaptations for her apartment. She was an active person who liked to be ‘out and about’. I seem to remember working with her on power wheelchair mobility issues, but it wasn’t this that she highlighted, but rather the message that I conveyed to her, ‘you can do it!’

– Barry Trentham, occupational therapist