Being a caregiver for a loved-one during the dying process is exhausting and emotionally draining. You spend months focused on caring for someone other than yourself, who you watch slowly pass away. Caregivers give all of themselves to their loved-ones, providing all kinds of physical, mental, emotional, and spiritual care during the dying process. The selfless act of caregiving is taxing an unsustainable, pushing several caregivers to depression, anxiety, and profound physical exhaustion. The challenges faced by caregivers are intensive, extending beyond the death of the loved-one.
The Role of the Caregiver During the Dying Process
A caregiver provides several forms of care to the loved-one during the dying process. The caregiver works tirelessly to provide comprehensive care that treats the whole patient, assisting with mental, emotional, physical, spiritual and social care. By caring for the whole patient, the caregiver can provide the best quality of life possible. The goal of the caregiver is to make the patient comfortable, calm, and at peace, easing the transition to death. Though the loved-one may feel at ease, the caregiver may be experiencing fatigue, stress, and anxiety. The strenuous role of the caregiver leaves little room for self-care during the dying process.
Caregivers & Pain Management During the Dying Process
The caregiver not only witnesses their loved-one in extreme pain, but serves as the most immediate source of pain relief. Caregivers often feel helpless and emotionally drained when their loved-one turns to them looking for pain relief that the caregiver cannot provide. Caregivers do not provide medical care. Rather, their pain management is provided through care and relief.
Caregivers may assist with medication regimens and tracking use of pain relievers. Caregivers may be knowledgeable in common pain syndromes and understand how to provide basic symptom management. Caregivers may use massages, music, and aromatherapy, to ease the pain of a loved-one. Not only does the caregiver have to combat their loved-one’s pain, they also have to quell their loved-one’s fears. Some patients during the dying process may reject medications or have unnecessary fears about pain relief medication–the caregiver must reassure their loved-one that the treatment is safe, and that the treatment will provide the pain relief they so desperately seek.
Managing pain for a loved-one during the dying process is overwhelming. The caregiver must take note of all symptoms, track their fluctuations, and provide any relief that they can. Caregivers easily grow fatigued when faced with such a constant, high-stakes conflict. Being helpless to ease a loved-one’s suffering is traumatic. Caregivers give all of themselves to provide the greatest amount of pain relief possible.
Caregivers & Emotional, Social, and Mental Care During the Dying Process
Caregivers are often the closest person to the patient, meaning the caregiver is often directly faced with their loved-one’s depression and fears. Caregivers assure that the patient will not be abandoned. Caregivers provide the loved-one stability to face their mortality and explore spiritual hopes and woes. Caregivers assure their loved-one is valued, that their life is valued. Caregivers must put the emotional needs of the patient before their own. As the loved-one faces their own mortality and must combat the overwhelming panic, fear, and sadness, so must the caregiver. The caregiver is an intimate part of witnessing and fighting-back the patient’s panic, fear, and sadness, meaning that some of these emotions will imprint upon the caregiver themselves.
Patients faced with the dying process often lash out in anger at caregivers because of their own frustrations. Patients may feel powerless, unheard, or worthless. Patients often take-out their anger on the person closest to them: the caregiver. The caregiver must take the anger in stride, pushing to help the loved-one as much as possible. The caregiver will help the patient identify sources of anger and help the loved-one better express their frustrations. Caregivers must assure that the illness is not a punishment, reassuring the patient that their needs and fears are being heard. The caregiver does not have the time or luxury for hurt feelings: they must put aside their own emotions and preserve, putting the needs of the loved-one first. This is just one of the many mental and emotional sacrifices the caregiver makes.
Caregivers also provide loved-ones the time and ability to pursue unfinished business. Because the loved-one has a finite amount of time, caregivers stall their own lives, putting-off their own wants and needs. Often, because of this, caregivers will develop incredible anxiety as they feel they have to constantly cope and combat every emotion. Caregivers are also particularly vulnerable to depression as they witness the emotional rigors of the dying process.
Caregivers & the Loss of their Self
During this devoted state of care, caregivers sacrifice their own daily life. They put their needs second to the needs of the patient. They fall out of social circles, activities, and habits. They repress their own emotional or physical needs. To better cope with the dying-process, some become numb. Because of the constant stress, caregivers may easily grow frantic and have a strong urge to hide from responsibilities. They may be disorganized in their own life. They may be unkempt.
Caregivers can fluctuate wildly across emotions. They may long for their loved-one to pass, for their suffering to end, and then immediately feel guilty. Sometimes, this is coupled with self-hate. Caregivers may feel helpless, anxious, stressed, depressed, and angry, all at once. Physically, caregivers experience a great number of stressors. Caregivers may oversleep or not be able to sleep. They may overeat or avoid food altogether, causing them to lose or gain dramatic amounts of weight. With exhaustion and fatigue comes dizziness, an inability to concentrate, and soreness. Caregivers can grow disinterested in activities or things that used to give them pleasure. Caregivers may feel that they have no source of support for themselves, or no outlet available to them, further isolating them from friends and family.
Caregivers & the States of Dying
Caregivers must directly face the hard realities of death. It is emotionally and mentally taxing to spend monthly rigorously caring for a loved-one who is terminally ill–no matter the care provided, the outcome remains unchanged. After committing all of themselves to caring for a loved-one, caregivers often grow depressed when the loved-one finally passes. Often, caregivers witness the death first hand. They must watch someone they know and love grow less active and disinterested, becoming distant and less talkative. They must watch, helpless, as breathing patterns fluctuate. Mentally, the patient may shift between various states of unconsciousness, suffering from illusions, or hallucinations. Sometimes, the loved-one may have delusions of persecution, believing that the caregiver is actually trying to harm them. At the end, caregivers must experience the greatest trauma of the dying process: watching their loved-one’s pulse slow, and their skin turning cold and grey.
The terrible, unavoidable nature of death can not be softened for the caregiver. The caregiver spends months devoted to the life and well-being of another, often resulting in the decay of their own well-being. After, they are faced with the death of their loved one. Then, they’re faced with the impossible task of moving on.
The Caregiver After the Dying Process
After months of such involved care, it can be jarring for the caregiver’s purpose to simply end. Caregivers often grow lost, angry, or depressed, when faced with the sudden and dramatic shift in daily purpose. Now, the caregiver must care for themselves.
Caregivers often describe their emotions after the death of their loved-one as intense and confusing. Caregivers may fluctuate between profound grief and anger. They may feel relief that their loved-one’s suffering is over, followed by guilt. Caregivers may stress that their loved-one passed because they didn’t provide enough care. Caregivers often experience an all-consuming grief that overwhelms them for weeks or months. Caregivers often struggle to remember how to care for themselves. After the death of their loved-one, it is possible for caregivers to grow distant and anti-social. After spending months so devoted to another, they may have fallen out of social circles, activities, and habits, that are then difficult to resume after the death of the loved-one. Often, coping is done through eating, sleeping, or alcohol.
As a caregiver, or the loved-one of a caregiver, it is important to know that there is help for caregivers, too. Be sure to pursue sessions with a grief counselor, or reach out to the team that supported your recently deceased loved-one. Sometimes, it just takes a patient, helping hand to get us back on our feet.
