The Realities of Caregiving a Loved One

In my role as a grief counselor, I meet people every day for whom caregiving has been their primary role prior to their loved one’s death. For some it has been a few days or weeks; for others the role of care provider has become their identity after months—or even years—of caring for an elderly parent, an ailing spouse, or a child with a serious illness.

?Nothing prepares a person for this role.? It can come about slowly over time as the result of a serious diagnosis, or in an instant following a tragic accident or medical event. The recognition that any one of us could someday need to step up to the role of providing care for a loved one is always present, yet simply impossible to imagine before it happens.

?While it would be ideal if a ‘village’ of people could share the tasks of caregiving; this is often not a realistic possibility for many families. If the loved one is not hospitalized, the need for around-the-clock presence of a care provider often falls on a single individual.

?There are many aspects of the role of caregiving that will be required as the care recipient’s condition declines toward death. ?

Hands-On Physical Care

Sick people need help moving and engaging in activities of daily living. Weakness, pain, injury, and cognitive changes impact the body in a wide range of significant ways. These include the loss of ambulation, loss of control of bodily processes (digestion, elimination, etc.), and often, the inability to communicate their needs effectively. Caregivers often need to interpret and anticipate their loved one’s needs on a moment-to-moment basis. The situation requires—almost by default—that the same person be available day in and day out, otherwise the patient’s needs are inconsistently understood and met.

?Many long-term illnesses involve the need for frequent doctor visits, medical tests, and hospital stays. The caregiver must manage physical transport of the patient as well as, the transport of medical equipment and often a wheelchair. Loading and unloading the patient for these countless trips is an added requirement of physical exertion and the sole responsibility for their loved one’s safety.

?The enormity of physical effort and stamina required for day-to-day hands-on caregiving cannot be understated. It is an overwhelmingly exhausting experience that becomes more demanding as the patient’s condition declines.

?Patient Advocacy and Hospitalization

Many medical conditions require frequent and / or extended hospital stays. In my work as a grief counselor, I have heard countless stories ranging from lack of attention to immediate patient needs, to sobering reports of negligence and misconduct by hospital staff. While this is the exception, rather than the rule, the caregiver present must be ever vigilant to advocate for, and be the voice of, their loved one and their needs.

?Asking questions, double-checking what medications are being administered and why, attending to safety for the patient when staff are not present, and communicating to the patient and other family members all that is going on are just a few of the responsibilities required of a caregiver accompanying a patient in the hospital. Hospital staff are often quite comfortable with a family member present, because it lightens their task responsibility (assisting with eating, making the patient physically comfortable in the bed, and conveying information, to name a few). However, this scenario can also lend itself to staff “assuming” the patient’s needs are met, resulting in less attention to your loved one while in the hospital.

?Decision Making

The designation of MPOA [Medical Power of Attorney] is in many ways an honor, as it conveys that your loved one has given you their complete trust to advocate for them and to make decisions regarding their care and treatment. It is also an enormous responsibility. In reality, these necessary decisions are likely discussed with others and agreed to with other family members. However, if there is not a consensus reached by all concerned parties, the designated MPOA is the single person who must make the final decision.

?Often, others almost immediately shift to questioning the decision made—especially if the outcome of that decision did not benefit the patient. The resulting guilt and second-guessing can wreak emotional havoc for the already exhausted and stressed caregiver.

?Isolation and Loneliness

Perhaps the remarks that I hear most often from former caregivers are about the overwhelming feelings of isolation and loneliness they experienced. While other family members go about their lives with an occasional check-in for updates, the hands-on caregiver is often living separate from their own family. They report experiencing extremes of emotion ranging from having a noble responsibility to fearing that what they once considered the normalcy of their own lives is lost forever. Caregivers of elderly parents miss out on their children’s school and extracurricular events, family meals, and the day-to-day commotion that is the essence of family life. Marital connections often suffer as well, as opportunities for catching up and for moments of intimacy are all but absent. To complain about what they are missing is to fear being misunderstood, because most caregivers truly believe that they are doing one of the most important jobs of their life. The truth of the matter is that one can feel both the importance of their caregiver role, and the despair of all they are missing in their own lives simultaneously.

?Anticipatory Grief

Defined as feelings of grief that are felt before a death actually occurs, anticipatory grief is real and can preoccupy the caregiver in ways that are difficult to manage. While trying to stay in-the-moment and attentive to their loved one’s needs, they cannot stop thinking ahead to the moment when the life they are caring for will end. While many people believe that anticipatory grief prepares a person for the actual death of a loved one, in my experience that is seldom the case. No one truly knows grief until they are in it. It is often unlike we imagine it, and involves guilt and regret for having been preoccupied with the impending death in the first place.

?Role Reversal

In many caregiving scenarios there is a moment when the caregiver comes to realize that their relationship with their loved one has changed. The parent who took care of you as a child, who was there for the victories and disappointments of your young adulthood, who has been a loving grandparent to your own children, who celebrated you in ways only a parent can is now someone who needs you to show up for them. They need you to help them with taking care of their own bodies, they need you to make sure they get their medicine on time, and they need you to make important decisions for them. Letting go of the need for them to keep taking care of you, and embracing your new role to them means coping with feelings of loss and enormous responsibility at the same time.

?Another aspect of this parent / adult child role reversal is that your parent may not welcome this change! Many elderly parents find it very difficult to accept any help from their children, and make this transition very difficult. Adult children in this position often experience resistance and alienation from the parent they are trying to care for, which can eventually lead to feelings of resentment that must be managed as well. Hanging in there when you feel like every interaction is a battle can be enormously draining, causing you to constantly question your approach and effort to help someone who is fighting you every step of the way.

?Likewise, the experience in a marriage of one person becoming sick and needing care can create feelings of loss for both people. No longer defined as a partnership, feelings of dependency and an imbalance of perceived contributions to the marriage can occur. Opportunities for intimacy and connection are often overshadowed by doctor appointments and care needs as well as, one person continuing to run the household and care for the children.

?Lack of Opportunity for Self-Care

The dedicated caregiver is often so overwhelmed with the needs of their loved one that they will postpone, delay, or cancel many of their own self-care tasks. Staying on top of their own healthcare needs, having lunch with a friend, spending time with their own families, getting enough sleep, eating healthy foods, and exercising are just a few examples of self-care needs that are neglected by many in the caregiver role. Over time, this self-neglect can result in significant physical and mental health concerns for the caregiver, that often are not simply reversed following their loved one’s death.

?Post Death Relief and Guilt

The last—and possibly the most difficult—aspect of the role of caregiver is what happens when their loved one’s death finally occurs. While it is not often discussed openly, there is almost always a sense of relief that the role has ended. To rationalize this feeling, they will often speak about the fact that their loved one is no longer suffering. However, this feeling is almost always coupled with extreme guilt. They report feelings of guilt for experiencing any relief following the death; as if they expected their role of caregiver to go on indefinitely. They report guilt for what they did do—and for what they didn’t do—that they have convinced themselves would have resulted in their loved one living differently… or better… or for longer.

?The responsibility and role of care provider for someone you love is clearly an overwhelming experience fraught with unexpected and challenging turns that no one foresee. However, the ability to rise to and meet the needs of someone you love as they face the end of life is also enormously rewarding, and often described as a defining moment in one’s life. I believe there is no greater calling than caring for someone who is no longer able to care for themselves.

After the death of a loved one, there is certainly a need for taking stock of your new normal. This transition back into your life without your loved one will take time. Along with the despair of grief is the opportunity to reflect on and identify lessons learned from the caregiving experience. Former caregivers often experience a renewed appreciation for their own health, and a commitment to never to take that health for granted.? Hopefully, there is also a sense of satisfaction and humility in having taken on one of the most difficult and anguishing tasks of a lifetime, and having done it well.

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“…pain is inevitable; suffering is optional.”

?????????????????????????????????????????????? Haruki Murakami