An excerpt from A Caregiver’s Love Story.
Whether you are the dying or the caregiver, living life to the fullest remains your goal, but somedays it’s just too darn hard. When you are so busy that it doesn’t seem you have time to take a breath, where does living life to the fullest fit into your day? It may just get a minute or two of your time but knowing that your life can change in a nanosecond may help you try just a little harder to fit life into your life.
Hug your child longer, spend a moment with a sunrise or a sunset, say “I love you.” Listen to the last notes of your favorite music on the radio before turning off the car, get out for a walk, or just water your plants and take a walk outside. All will help you seize the moments as they arrive. They are fleeting, so you need to pay attention. Living in the moment takes hard work and practice.
There are many challenges for the dying patient. Some are substantial and overwhelming. A caring physician trained in treating the dying patient may be the source for the best care for the patient. Many physicians are not trained in coping with the dying patient, and this can lead to many miscommunications and discomfort for both the patient and the doctor.
An understanding of the dying patient’s experience should help the physician improve their care of the terminally ill. These physicians are often known as palliative care doctors. The doctors specialize in medical care for people living with a serious illness. This care is focused on providing relief from the symptoms and stress of the illness. The goal being to improve the quality of life for the patient and the family. They can assist with the following six challenges that are common to the dying patient:
1. Pain. Pain and the fear of pain often make the patient’s behavior change at the end of life. Cancer patients rank “freedom from pain” as one of their goals for care. Even though the fear of pain is there, the elderly are often unwilling to report their pain because they believe it is a normal symptom of aging and that their pain is directly associated with the worsening of their illness.
2. Depression. The presence and severity of clinical depression often correlates with the severity of physical illness and, in some, a progressive inability to get out of bed. A decreased appetite may also suggest major depression. Anxiety commonly co-exists with depression, and it may be driven by fears of helplessness, a loss of control, abandonment, or pain.
3. Coping. Patients with advanced illness face the challenge of coping with their disease daily. While some patients demonstrate optimism, practicality, resourcefulness, awareness, and flexibility, others present with a variety of defensive styles in response to their diagnosis. These defenses can be denial and non-compliance, which can lead to a delay in treatment.
4. Dignity. For dying patients, maintaining dignity is foremost in their care, broadly defined in terms of being worthy of honor, respect, and esteem. For many patients, dignity is directly related to the level of independence retained through the course of illness.
5. The need for control. For some terminally ill patients, maintaining a sense of control is a central task of the dying process. This need for control is prominent among patients who request physician-assisted suicide (PAS) in Oregon. These patients were universally described as having strong personalities; they were determined and inflexible, and they wanted to control both the timing and the manner of their deaths.
6. Other aspects of the dying process. Dying patients and their families often must deal with complicated “practical” issues, such as financial problems and legal issues. These seemingly mundane concerns can cause a great deal of distress for dying patients and their families. It’s a good idea to take care of the difficult things while the dying can make decisions. Wills, trusts, burial requests, and choosing a grave site can be taken care of while the person is well, so the decisions are not made after the death.
While nature is selfish, you don’t need to be. You might find that your best friend is yourself. You know when you need a hug or when it’s time to rest or try to appreciate the moment you are in. You also know when you are at the end of your rope and need to walk away, so things don’t blow up and get out of proportion.
There are five regrets the dying often have when it is too late to do anything to change them. There is still time, if you can try and make some small changes now, so your regrets are fewer in the end.
1. I wish I’d had the courage to live a life true to myself, not the life others expected of me. This seems to be a very common regret when people realize that their life is almost over and look back on it. Many dreams when unfulfilled due to choices they made or did not make. When we are healthy, it’s hard to realize that a decision now, which we may only be allowed to make once, can change our life forever. Time may run short, and the chance won’t come up again.
2. I wish I hadn’t worked so hard. This regret is more common with men than women. Or it used to be. Since men are often the primary source of income, they regret what they missed while working. Time with children and spouse being the main regret. This is changing now that women are a strong force in the workplace. The working mother who has a child and goes back to work right away may eventually regret the lost time with the child as an infant.
3. I wish I’d had the courage to express my feelings. Suppressing one’s feeling to keep peace with others may result in a mediocre existence and prevent the person from becoming the person they were truly capable of being. Illnesses can result from this, and one may never realize the cause. Mental health is as important as physical health. Bottling up emotions and thoughts is hard on one’s psyche.
4. I wish I had stayed in touch with my friends. There are many deep regrets over lost friendships. Getting caught up in one’s day-to-day life makes it easy to let friends slip away. Waiting until the end of life is way too late to try and track old friends down.
5. I wish that I had let myself be happier. Many people do not realize that happiness is a choice. We get comfortable in the way we live our lives and don’t realize that happiness is easy to come by if we just work at it a little and let it in the front door. Fear of change makes people pretend they are happy, but truly they are not. A good laugh and some silliness won’t hurt anyone.
Nancie Wiseman Attwater is the author of A Caregiver’s Love Story.