The Dark Side of Caregiving

Both giving and receiving care can be highly charged subjects. As an adult, needing to receive care is often tied to a loss of independence, loss of the sense of being able to have an equal exchange with others, loss of privacy, loss of dignity, and fear of being unable to fend for one’s self. Giving care to another, whether to a child or another adult, can equal a loss of time for one’s own interests and needs, loss of independence, loss of income, loss of freedom, and a fear of failure. The feelings that are stirred up by a need to provide or receive care can be positive: satisfaction at being able to help; the warmth of feeling needed; the pleasure of watching a loved one recover. But there are frequently very strong negative feelings involved as well: grief and loss when the help is rejected or unsuccessful; depression when the need is extended and stressful; intense loneliness when the demands result in isolation from friends or pleasurable activities.

The strongest positive emotion connected to caregiving is satisfaction when the process goes well for both giver and receiver. There is possibly no other feeling more wonderful than the feeling of having been helped when the help was desperately needed or the feeling of joy that results from seeing a person you have worked hard to help benefit from those efforts. The strongest negative emotion connected to caregiving is guilt: often an overwhelming and destructive sense of guilt that can strike both the recipient of the care and the giver of the care. That feeling of guilt is often made more powerful by feelings of shame and failure that accompany the guilt.

Caregiving is a major part of most people’s lives at any stage but in the final fifteen percent of our lives, the part this blog is most concerned with, we have reached a point where on average we are losing three friends or loved ones a year and the need to be involved in caregiving is at a peak.

Our feelings about caregiving are often already well formed by the time we reach the later stages of life. In childhood we are primarily the recipients of caregiving and we are strongly affected by the quality of that care. But we also begin trying to be helpful when we are quite young and how our efforts at caregiving are received also has a critical effect on us. For those of us who have children, caregiving becomes a great concern in the middle stages of life but even people who are childless often have major caregiving responsibilities through their careers. Teachers, nurses, and other helping professions are obvious for their caregiving facets but corporate workers and tradespeople, among others, frequently have a large caregiving aspect to their lives due to mentoring activities or volunteer efforts. By the late stages of life, care for our parents, siblings or spouses/partners becomes a much bigger issue. And the care we need for ourselves also can increase tremendously.

As I was thinking about what I wanted to write in this post, I found myself naturally considering my own caregiving history and that examination led me to several realizations that have been helpful to me. I hope anyone reading this post has a similar experience. In any event, I will use my own history as an example for what I want to say today as I can describe it without violating someone else’s privacy and I think it is fairly typical of most people’s experiences. By the way, as a disclaimer I will say right up front, I have had some phenomenal failures along with some successes at both giving and receiving care so I am not discussing this subject from the viewpoint of having great expertise at it. In fact, it was another recent failure that set me to pondering the subject. Likewise, caregiving and trauma are often closely linked so this subject can bring up strong emotions, both positive and negative. It has certainly done so for me. The stronger the person’s drive to care for others is, the greater the potential trauma if the care given is not successful. Likewise, the greater the need for receiving care, the greater the loss if the care is not satisfactory.

I was extremely fortunate until I reached the age of 13 when it came to receiving good care. My parents were kind, loving people who did a very good job of meeting my need for care. Their efforts weren’t perfect, any more than my own efforts to care for my children were perfect, but they were always well intended and largely very successful.  I am well aware of how fortunate this makes me. There are far too many children in this world who would not be able to say the same about their early care. According to my mother, I was a natural-born caregiver. She claims I followed her around as a child trying to help with the care of my younger sisters and with my mother’s housekeeping efforts. When my youngest sister was born, I was nine years old and I considered that, while other children had dolls to play with, I had been given my own baby to care for. I remember my mother expressing concern that I would grow up with lop-sided posture because I carried my sister around on my hip so often. Until the age of thirteen, my efforts to help others were largely successful, at least in my own eyes. And then all hell broke loose!

When I was 13, my father was diagnosed with terminal cancer. He spent more than three years suffering and then he died. I attempted to be of help in his care to the extent of my abilities but my efforts were doomed to failure from day one since I considered the only acceptable result of my help would be his recovery. My own unrealistic expectation was largely what doomed me to feel I had failed miserably. I did not realize until much later in life that actions taken by me that might have eased his suffering a bit or even amused him during this difficult time might have been successes. I judged the quality of my care by a standard that I was destined never to be able to achieve.

Often my help during that period involved trying to care for my two younger sisters so my mother could devote her attention to my father’s more urgent need for care. In this too, I was destined to feel like a failure due to my own considerations about whether I had cared for my sisters well. While I did often feed them, entertain them, distract them from the worst of the horrors of my father’s extended demise, I was not able to prevent them from being damaged by the events that were happening in our home during that time. Both my sisters were traumatized by the experience of watching their father die. My mother cared for my father at home throughout his illness and death and the sights, sounds and smells of that process of dying had a traumatic effect on both of my sisters. Today I realize that I did often succeed at providing them with some relief from the situation but I judged my success as a caregiver at that time by whether I was able to make them happy and again, I was doomed to feel that I had failed miserably by that standard.

The most devastating experience for me as a caregiver during that time happened on the night my father died. When my mother told me he had stopped breathing and she would be calling the doctor and then the mortuary, she asked me to care for my two sisters, who were aged thirteen and nine at the time, and to keep them distracted while the men from the mortuary removed the body from our home. I had never seen a dead body before so I welcomed the idea of being absent while that task was done. I was seventeen, an age where, in many cultures, I would be considered a young adult, but I had never dealt with death before and I was frightened at what was occurring. I made a major error in judgment that night.

I first considered taking my sisters for a walk while the body was removed but it was dark and chilly outside. When the mortuary attendants arrived, I decided to take my sisters into our bedroom with the door closed and keep them busy talking to me during the removal operation. But the hallway that led to my parents’ bedroom where my father’s hospital bed resided was farther down the narrow hallway from our room and there was a sharp corner just outside the door to our bedroom. In order to maneuver the basket stretcher containing the body down the hall and turn the sharp corner, the attendants were going to have to open the bedroom door. I heard the men discussing that fact as they approached in the hallway. We could also hear the stretcher banging into the walls. I was confused when they referred to the stretcher as a basket and somehow pictured my father’s body being removed in a large round woven basket, an idea that was very disturbing to me. Then I realized the men would be opening the bedroom door in order to be able to make the turn and my sisters and I would see what was happening. In a panic, I took my sisters and quickly pushed them into the bedroom closet and shut the door. The three of us sat on the floor of the closet in the dark clinging to each other as the men struggled to make that tight corner. The sounds, and the fear we felt, are still vivid to me today. I had failed to remove my sisters to a position where the situation would be less traumatic and instead had put them in a worse position.

I tried to comfort my sisters while we waited what felt like an interminable amount of time for the action outside the closet to be finished but my efforts seemed ineffective. I felt like a total failure at caring for my sisters that night and I realized as I remembered the incident later that I had made some harsh decisions about myself while sitting there in the closet with my crying sisters clutched in my arms. I have learned as a trauma counselor that decisions made during moments of extreme stress have an inordinate amount of power over the person making them. Because the incidents that caused the stress are so difficult to confront, the person making the decisions rarely re-examines them to see if they are appropriate. Trauma counseling consists largely of helping someone confront those moments so that such decisions can be reconsidered once the person has had the opportunity to recall the incident and talk about it in a safe environment.

I was extremely fortunate because I eventually got help from a competent trauma counselor and was able to view my frightened 17-year-old self in a more compassionate light and forgive myself for the mistakes I made that night. Because of that I was also able to regain some confidence in my caregiving potential and learn from my mistakes. Many people who have experienced similar failures don’t have the opportunity to receive the help I did and they suffer from their failures for the rest of their lives.

My own ability to receive care from my parents was also a victim of my father’s illness. I could clearly see how overwhelmed my mother was by her responsibilities for my father’s care and I would never have added to that burden by asking her to try to deal with my needs too. Ignoring one’s own needs is also a common outcome for children who have to live in a frightening environment or who have parents that are overwhelmed with responsibility. Parents struggling with their own addiction issues or mental illness are also unable to give care to their children just as parents in war-torn countries are so busy just trying to survive that they may be unavailable to help their children with more minor problems. Later in life, people reared in that kind of environment may still be unable to accept the care giving efforts of loved ones without feeling guilt or discomfort. If we can manage to recognize where our discomfort originated, we are better able to recover from that inability to accept help.

I don’t feel that my situation was unique. There are many families impacted greatly by the illness of a parent, grandparent, sibling or other family member. Sometimes the illness is physical; other times it is due to an addiction or a mental disorder. In other cases, it isn’t an illness but rather the fact that the family lives in a war-torn country or experiences severe poverty. All of these situations can lead a person to have major traumas connected to the subject of giving or receiving care.

For other people, the losses often associated with caregiving come later in life and result from the illness of one or more of their children. I was very fortunate in not experiencing that element of caregiver trauma. Because my parents had modeled great caregiving behavior for the first 13 years of my life, I was well equipped to care for my own children. In addition, my children were all physically healthy and had no serious addiction or mental illness problems. In my career as a trauma counselor, I have heard parents’ tales of the unspeakable pain that comes from watching a child suffer and/or die. I may regret that my attempts to care for my children were not always completely successful but, like most children, mine were very resilient and survived my caregiving mistakes without serious damage. I feel extremely grateful every day for that fact.

Caring for a terminally ill person, whether that person is a child, parent, sibling or other loved one is the most difficult kind of caregiving there is, especially if the caregiver shares my mistaken idea that the only real help is to prevent the person’s eventual death. I have been reading a number of books on hospice care recently and am so encouraged at the changes I see in caring for terminally ill people. The first and most important step is to remember that we all die sometime and that death does not equal failure. All of our lives are terminal. In our culture, there has been a tremendous fear of death. Even people who believe in a wonderful afterlife don’t seem to want to go there. I wish there had been a hospice program when my father was ill. Hospice care today can often help the entire family of the ill person. My first step in recovering from the feelings of failure I had when my father died was recognizing that, with the right kind of care, his passing could have been far less difficult. I have the ability to learn how to do a better job than I knew how to do when I was a teenager. Just knowing that fact is helpful to me.

Today hospice care focuses on making a person’s final days as healing and rewarding as possible. Hospice, of course, focuses on making the process of dying as pain free as possible, but it goes well beyond that and also works to ensure that dying people have the opportunity to resolve life-long issues and to have tremendous realizations that lead to a more fulfilling life as well as a calm and dignified death. We can start that process before we are actually dying however. We can start it right now. I have listed some of the best books on hospice care I have read in the section of this blog called “Books I Have Loved.”

As we approach the final fifteen percent of our lives, we are going to experience the deaths of many friends and loved ones. We are also going to have to confront the approach of our own death. I highly recommend studying books on hospice care that describe some of the wonderful ways hospice workers can give care to dying people. My own fear of death and my fear of being unable to properly care for a dying person diminished greatly when I read some of the amazing stories told in the following books: Dying Well; Final Gifts; Final Journeys; Perfect Endings; and Wisdom of Dying. I learned from these books that this final stage of life can be wonderful and amazingly fulfilling. Those of us in the final fifteen percent of life may have fifteen or twenty years (or more) left before we leave this world, but we have friends and loved ones who don’t have that long and we need to learn how to help care for them and how to ultimately make certain that we receive good care when it is our turn to go. And, yes, I am going to have to file this posting under the category called “My Children Think I’m Morbid,” but I feel I am just a practical person who recognizes the inevitability of the fact that life here on Earth does come to an end at some point. I am determined to make the most of the remaining time I am here and to try to help others do the same.

I called this post The Dark Side of Caregiving because I got the idea for researching and writing it when I was having a particularly bad day as a caregiver. On the day I decided to write this post, I was feeling isolated by my husband’s house-bound condition; I was feeling discouraged about my care giving skills; and I was depressed because I saw no end to the stress of providing care. When I made the decision to address this “dark side,” and began the process of doing some research and beginning to try to express my feelings on the subject, of course, my depression began to lift. As I thought back to a lifetime of giving and receiving care, I had many realizations about what had gone wrong but also about what had gone right. My perspective on the issues returned and the feeling of isolation also lifted as I began to communicate with others through my writing. I would love to hear from others about their experiences and how they lift their own spirits when the dark side overwhelms them.


3 thoughts on “The Dark Side of Caregiving

  1. While I don’t have any experience in direct care-giving for anyone in their final stage of life, I feel that reading your blogs is giving me a wonderful insight for when the time comes. It sounds like this blog site is a win-win! It gives you a release and it provides inspiration to the readers that we, too, can enjoy positive experiences while we make it through a tough time.

  2. Your blogs are so very insightful. This one on the dark side of caregiving is particularly meaningful to me. As I was reading your comments on feelings of failure during times of caregiving, I began to realize, and also understand why it is, that I’ve never fully confronted similar feelings, particularly the guilt I carry over caregiving decisions that I made, or didn’t make, during difficult and overwhelming circumstances prior to the deaths of each of my parents and my late husband. Your blog has provided me a first step in acknowledging, confronting and addressing some very heavy and painful feelings, with a hope that self-forgiveness is possible.
    Thank you for sharing your experiences, reflections and insights as you and Bill continue on this very challenging road of caregiving/care receiving.

  3. To put into words what you have experienced emotionally and what you have learned as a caregiver is a wonderful gift. It is a gift to those of us who have felt the guilt, the helplessness, the loneliness and yes, the exhaustion that comes with caring for a loved one in that last 15% of their lifetime. I have only twice experienced this kind of caregiving, once with my mother and recently with my husband of 56 years. I was glad I could give the care that was needed but always questioned myself as to whether l had done all I could. It is reassuring to know that others experience similar feelings and that we can learn how to come to ‘terms’ with these feeling as we grieve. Thank you for sharing with us, Janet

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