An excerpt from A Caregiver’s Love Story.
Dying and introspection happening at the same time were a dual reality that I found impossible to ignore when Bill was not doing well. As Bill’s poor prognosis and impending death began to reflect on our life, it was getting harder to respond to the living as we had in the past. Bill seemed to be pulling away from everyone he knew, except for a handful of friends and me. As a dying person, he seemed to be concentrating on only one thing – dying. The truth is that nature is selfish and dying is just part of the natural transition as someone ages. You can’t avoid it, and sometimes it can even sneak up on you.
The hard reality was difficult for me, that our life was falling apart and changing dramatically when the rest of the world did not seem to notice. In the retirement community we lived in my neighbors often said, “Everyone has something going on.” Meaning some illness or family issue affects us all. We are all at an age where we don’t seem to be able to escape the reality that “life happens,” and with that, so does illness and dying. The thing is nature doesn’t care and doesn’t stop when our world seems to be falling apart faster than we can count the minutes. Life has its own force, and there is no stopping it.
Where I may have felt that everyone else’s life was moving at a different pace than ours, none of this mattered anymore because we only had one thing on our mind in our house, and that was Bill and his illness. I was often, or I should say frequently, asked by neighbors and friends, “How is Bill?” The emphasis was on Bill’s health always. My insides were screaming, again very selfish on my part, “I’m not doing so well, but he seems fine today.” I only had one neighbor that ever asked, “How are you doing?” when I saw her. I wanted to hug her.
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, and 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 correlate 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.
Nancie Wiseman Attwater is the author of A Caregiver’s Love Story.
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