Medical challenges have a ripple effect. The initial wave knocks the feet out from underneath the patient, but right behind them the undertow tugs at the footing of caregivers and loved ones. As supporters, we try to remain steady, but find that we are peppered by questions and requests for updates. Our thinking is interrupted by thoughts of what we should ask at the next appointment. Sleep is elusive due to our worries. Our lives do not feel like our own as we stay perched to spring into action to help our loved one in their crisis.

In the face of all that transpires, a shift in our feelings is as inevitable as are the changes to our day-to-day routines. When our loved one struggles, it is normal to feel upset about their battles in addition to our own feelings and reactions. Feelings are a sign we are experiencing the reality of the moment. Most of the time, we think of feelings as being something we are overtly aware of, but feelings can sit below the surface, hiding in waiting for a time to emerge. Therefore, not everyone reacts to situations with an increase in feelings or awareness; some experience a decrease in emotions and a flattening of reactions as ways to cope. There is no right or wrong. Reactions are unique to each of us.

In this chapter, we will focus on the caregivers and other loved ones of patients.

• As a primary caregiver and supporter, this information can help you appreciate how your experience influences your emotions and functioning and learn what may be helpful to you.
• The patient will find it helpful to read this to understand what supporters may be experiencing.

There are No Wrong Reactions

The news of a loved one’s health crisis shifts us out of our normal experience and causes our brains and hearts to reel. Things become surreal. Initial reactions come fast and furious. Our reactions are scattered and plentiful. Our minds flip from one issue to another, all the time wondering, “How did this happen?”

As caregivers, our reactions shift like a kite on a windy day. We never know what we will face — when we will be lifted up and when we will take a nosedive. Kim’s experience in one day captures the twists and turns of a loved one’s medical crisis — because their crisis is ours.

The ups and downs caregivers go through are intense. As caregivers, we are often more aware of the risks and side effects of treatment than are the patients. We wait vigilantly for the slightest change in order to protect and help. Therefore, we are particularly vulnerable to shifting emotions. There are no wrong reactions. Whatever your reaction, it is your brain’s way to try to protect you and help you function. However, many caregivers do share some common responses, including shock, anxiety, anger, and more. Let’s look at them.

Shock

When I first heard about my brother, I was in shock. He had always been so healthy and he was so young.–KL

Shock is often the first reaction when a sudden and unexplained event occurs. While shock does not feel good, it serves a positive purpose.

Shock is the brain’s danger alarm. Shock gets our adrenaline flowing and sends us into action mode. Remember the caveman and the mountain lion? Without experiencing shock, the caveman would quickly be attacked by the mountain lion. Feeling the shock of the moment allows our brains and actions to shift into moving forward.

Once the brain recognizes the danger, as signaled by adrenaline and other neurotransmitters, our brain moves to a second level: a search for understanding. Understanding helps in formulating plans and how to proceed. Creating a plan allows us to be helpful and begin to manage what lies ahead.

I went into total disbelief, bewilderment, and questioning how did this happen? What caused a very healthy young woman to receive this (appendiceal cancer) diagnosis?–JG

I was in shock and didn’t really hear what I was being told when my 12-year-old son was diagnosed with leukemia.–LVB

Fear, Worry, and Anxiety

I worry about my son’s happiness daily. There is so little he can do and he enjoys far fewer things than he did before. I worry about how or if his life ends before mine. It’s hard not to worry when your child can no longer speak. We worry daily about his quality of life and what we can do to enhance it.–RR

Fear, worry, and anxiety emerge when we, caregivers, are thrust into an unfamiliar world. Our minds are peppered with thoughts of uncertainty. We have no idea how our lives will be from this moment on. Will he die? Will she be dependent on us for the rest of her life? How am I going to cope? What am I supposed to do?

As uncomfortable as anxiety is, it can lead us to be good helpers. Anxiety brings forth “what if” questions, and those “what ifs” drive us to find answers. We can put these worries into the form of questions and present them to medical personnel and others with similar experiences. For example, when Laura’s father-in-law was diagnosed with skin cancer that soon took his life, she worried her husband would get skin cancer, too. It was important for her to talk to the medical team about the genetic component of his particular skin cancer.

Workbook Chapter 19 Caregivers’ Reactions Worries

Make a list of your worries and “what ifs.” Turn each item into a question and list whom you can ask to find an answer.

Worries and what ifs	Question	Whom can I ask

Anger and Resentment

Angry? You bet I’m angry.–BA

Anger and resentment are often viewed negatively within our culture, but they are appropriate responses to unexpected or undesired situations. It may be hard to pinpoint the specifics of what “creates” your anger, because there is much to be angry about when a loved one is in crisis. Common feelings that feed our sense of anger are how unfair it is, feeling overwhelmed, increased demands upon our time, uncertainty, and vulnerability. Anger can be experienced in three ways: pervasive, directed, and internal.

Pervasive anger is an overall feeling of anger that permeates overall mood and reactions. This all-encompassing anger is not directed at one person in particular, but to many you encounter. Unexpected anger can bubble forth when a colleague makes an unintentional error. Anger can seep out in situations when your typical reaction would not be as explosive or intense, such as water spilling at the dinner table. Difficulty sleeping and having bad dreams occur because the complex feelings of anger surface in our dreams when we are less guarded.

Directed anger is focused on a particular person(s) or situation. It is common for us to experience anger at a medical team member who spends less time with us than we need, runs late for our appointment, or brushes off our concerns. We look to medical personnel to solve the problem, and when we see their humanness of being late or unaware of what we need, it causes us to panic. The deep-seated panic turns into anger because it feels safer to be angry than vulnerable in their hands.

Our vulnerabilities and fears sit just beneath the surface, demanding to be heard — and sometimes they are directed at loved ones. Expressing this vulnerability through anger gives us a greater sense of control. After our anger has erupted toward our loved ones, we experience heightened remorse, as we recognize we just added to an already complicated situation.

Internal anger is feeling angry but not letting it out. It sits and festers inside of us. Sometimes we don’t even know it’s there. But anger has to go somewhere. If it is not released, it can cause physical maladies, such as high blood pressure, aches, and pains. Releasing anger through physical activity, expressive art, writing, crying, or shouting in the car helps return the body and brain to a steadier state.

Regardless of how anger is expressed, it is important to know it is common. Determine the best way for you to release your anger so your life doesn’t become more complicated.

Workbook Chapter 19 Caregivers’ Reactions Anger

List three ways you can release your anger in constructive ways.

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I prayed a lot. Probably fair to say I got angry with God. It was just too much. I still don’t understand it.–LF

I ran into a friend who is a doctor and she told me she heard my sister had pancreatic cancer. She made the comment, “Of course, she is doing palliative care.” I didn’t even understand the word “palliative,” but when I looked it up and realized it meant just providing care to keep her comfortable for illness that couldn’t be cured, I WAS PISSED! I never stopped hoping my sister would get better, so I was really mad at my friend for “giving up.” Then one night my brother called me. He told me from the moment he heard she had cancer; he was preparing himself for her death. I was now PISSED at him! How dare he! He was her big brother. I told him she needed us to have hope. He told me I needed to be more realistic. We had a big talk about it and we came to understand we each needed to deal with it our own way. I don’t regret not giving up hope. And he doesn’t regret spending those four months preparing himself.–AM

Denial

My mother was diagnosed and treated twice in her 30s for breast cancer, but insisted she didn’t have cancer. When I was told I had breast cancer, I requested my mother’s paperwork from the hospitals where she was treated. When I showed her the paperwork, she finally said, “Oh, I guess I did have cancer.” But I still think she never really accepted it.–RG

Denial is a form of not believing a diagnosis, prognosis, or situation. Denial can be experienced when a situation seems unfathomable. The extreme nature of an accident or illness can cause us to suppress the realization of its seriousness. Both patients and caregivers can be in denial.

Years ago, a couple made a counseling appointment with me. Over the phone, the husband said his wife, Sarah, had pancreatic cancer and was seeking relaxation techniques to help handle the searing pain. I set up the appointment. Sarah, an extremely frail and thin woman, entered my office in a long winter coat on top of sweaters and a scarf. It was August.

Tom laid out the history of Sarah’s cancer and treatments. After a few minutes, Sarah asked if she could lie down, as fatigue overwhelmed her. I asked Tom to leave so I could work with Sarah on relaxation techniques.

As the door closed, Sarah told me she didn’t want to do anything but sleep. She explained that she knew she was dying. Her doctor told her there was nothing more that could be done, and the second, third and fourth opinions they sought (well, that Tom sought) were all consistent with that. Sarah shared that Tom couldn’t accept the reality. “He is denying that I’m dying. He takes me from doctor to doctor hoping to find a cure. I don’t want to see any more doctors or have any more appointments. I just want to rest.”

Sarah expressing her thoughts and feelings to Tom did not yield any changes. Her words pushed against his denial that his beloved wife was dying. Tom couldn’t help it. Experiencing denial was how his brain managed to see Sarah in pain, withering away, and dying. Tom’s denial was a protective mechanism that took center stage when feeling and experiencing was just too much.

If you find yourself in denial at times, realize that it is one way your brain is trying to cope. Many times denial waxes and wanes. A particularly tough day may break down the denial and we realize how worrisome this all is, whereas good days not only give us strength and hope but can lessen our awareness of the impact and seriousness. All reactions serve a purpose.

Kim’s Experience A Brutal Day

Our three-month-old son was in the hospital recovering from having surgery for truncas arteriosus, a rare heart disease. A few days after his second, successful surgery, we were talking to doctors and discussing going home in a few days. Great news.

I noticed he wasn’t moving one of his legs. I pointed it out to a nurse, who brought in the neurologist. The neurologist said Matthew had had a stroke. Terrible news.

I was scared. Would he be disabled his whole life? However, the neurologist thought he would recover because he was young. Ok. I need more prayers, but we were still going to be able to bring him home soon. Good news.

Later that morning, the heart team came back in and said they wanted to go back in for additional surgery the next day. Terrible news.

Re-enter the neurology team. I mentioned the additional heart surgery. “No way. He has to heal from the stroke and there can be no surgeries for six months,” was the reply. WAIT! Will he die without the heart surgery? I cried when they left.

In comes the heart team, who had spoken with neurology. They had repeated the echocardiogram, and it showed improvement. They wouldn’t have to do surgery. We were back to going home in a few days. Good news.

I drove home from the hospital wondering how I was going to be positive for my other two children, five and three years old, who were waiting for me.

It was a brutal day.

 

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What Caregivers Need to Know

We found it incredibly helpful to educate ourselves about schizophrenia and to connect with other people who had loved ones dealing with mental health challenges. Our education included taking NAMI’s (National Alliance of Mental Illness) Family-to-Family course. After completing this course, a group of us from the class continues meeting once a month to provide an ear and offer what support we can for each other. We’ve been meeting once a month for about six years now.–MCM

Most of us have little knowledge about certain diseases or traumas until we are thrust into the situation. Names of less commonly known diseases, treatment options and medications quickly become as familiar as our own names. We receive an education we never thought we would need.

While many who have dealt with medical crises recommend that caretakers arm themselves with information, not everyone wants to know or learn. Having knowledge about the crisis can lead some to experience increased anxiety, worry, and confusion. Therefore, it is important to know what is important and will help you. As with so much of this journey, the choices are personal and depend on what you need and want.

Workbook Chapter 19 Caregivers’ Reactions What We Need to Know

Here’s one way to evaluate if you need or want a specific piece of information about your loved one’s situation.

Step 1

Will this information help me	Yes	No	Maybe
Will it help me be prepared
Will it help me understand the diagnosis and treatment
Will it help me learn about the course of treatment and what will happen
Will it help me understand the side effects of medication, treatment or illness
Will it help me be a better advocate

 

Step 2

After you think about the above areas, move to the next layer. Identify what you want to know, who to ask for the info, and who will ask. The latter column is helpful if a group of people is working together as caregivers. Together, you can determine who will gather what information and report back.

 

Step 3

A final area is to acknowledge what you don’t want to know. Maybe you don’t need to know something and don’t want to spend time on it. Maybe you don’t want to know it now.   

What I don’t want/need to know

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Featured image courtesy of rade nugroho on Unsplash.