FAILURE TO COPE

“There are only four kinds of people in the world: those who have been caregivers; those who are currently caregivers; those who will be caregivers; those who will need caregivers.”

— Rosalynn Carter

We come to the work of caregiving without any training on how to be an advocate for our loved one OR how to care for ourselves while we do this. Since this is sacred work, it requires a connection to our self, our loved one, our families and friends, the healthcare community, our Higher Power and the universe. Many of us don’t understand this need or know how to expand our world in the midst of a medical crisis. Whether you are a seasoned or beginning caregiver, it is easy to set aside your own needs for another. No one wins when we do this.

Caregivers, by the very nature of their work, tend to be isolated and uncertain about whether they are “doing the right things” for their loved one. Additionally, while adults are provided many models about how “not to do” something, we receive little to no guidance about what “right” looks like!

While I was a successful advocate for my husband during his protracted illness and hospitalization, I was an unsuccessful caregiver. What do I mean? I didn’t pay attention to the first and last recommendations in my book, Take Care of Yourself. It was only after five years of solo caregiving that I took stock of my own health and discovered:
• 100 extra pounds on my body in all the wrong places;
• high blood pressure that was not being controlled by three medications;
• extremely high triglycerides; and
• metabolic syndrome, a precursor to diabetes.

In order to address these urgent health issues, I had to completely remove myself from any caregiving and focus solely on myself, the result of which was a divorce. While I am much healthier today, in retrospect, I know now that my failure to attend to my own issues is very common among caregivers.

Today, my now ex-husband l and I are renegotiating our relationship as we finally acknowledge that we are no longer the same two people that entered the hospital almost seven years ago. How were we different?
• Bill was physically debilitated and mentally impaired. He expected “full” recovery in spite of being told otherwise. I other words, “my husband survived, the man I married didn’t.”
• I had terrible PTSD, jumped at any and every sound and was so hypervigilent that there was no humor left in me. And, truth be told, I was now used to being totally in charge.

Bill’s illness created his differences. I created mine. How did we get here? While Bill was hospitalized, I had nursing help to care for him. He was monitored 24/7 and someone else cared for the house. Once I brought him home, there was no help and I asked for none. I thought I could do it all. No machines monitored him, I did. I heard him begin to seize from another part of the house when he fell off the bed. I knew he was running a fever again when I thought to check it.

I took care of house, pets, finances (including $1.75 million in medical expenses), scheduled and transported him to copious medical appointments, managed prodigious amounts of complex medications, modified the house to accommodate his disability, carried his wheelchair everywhere, pushed him up the steps, required him to accept accommodations (like a gate belt) that he philosophically didn’t believe he needed. His resistance to this accommodation resulted in Bill falling and breaking his feet 3 times.

What is the difference between a healthy caregiver and a loving family member? Unless a family member approaches caregiving with a commitment to care for their own health FIRST, they will become an unhealthy caregiver and potentially, in the case of marriage, a soon-to-be ex-family member. How does this happen? I went from loving wife to mother to jailor. I did this, not him. While my intentions may have been laudable, my actions were based on fear, fear that he would “die” on my watch. Clearly there was a little ego in my actions, as well.

Mary Robinson Reynolds named my failure this way, “If a chick is helped out of its shell, it will die. If a butterfly is helped out of it’s cocoon, it will die. The gift, or the service you can provide to humanity is to let the struggle take place, as with your own struggle to not over-do or over-give for people. Miracles happen when people get so in touch with their desires that they start asking for what they want. When they do this, they start sending new vibrations out. Miracles happen when we decide it’s OK to not struggle or suffer any more. There is nothing valiant about suffering.” And I suffered because I did not ask for what I wanted. I did not ask for help… I struggled with where Bill ended and I began. And today, I know that what I experienced is normal and I have forgiven myself for my failure to cope.

If you have any doubt about the “normalcy” of my failure to cope, consider these statements from experts in the field.
• Suzanne Mintz, president and co-founder of the National Family Caregivers Association, states that “Spousal family caregivers' risk of depression is six times greater than that of non-caregivers... And, they are less likely to reach out for help... To protect their health… family caregivers to spread the work load. Caregiving is much more than a one-person job... Often… caregivers do not want to ask for or take help..." (2/10/08 HealthDay News).
• Adults who care for a sick or disabled family member “often have medical problems of their own, lack health insurance and are stressed by medical bills. 45 percent of the caregivers have one or more chronic health problems, compared to 24% of those who are not caregivers. It looks like they are having a difficult time." (8/24/05 HealthDay News).
• "The added responsibility that someone has after a loved one leaves the hospital can lead to feelings of isolation, increase depression, and make them not eat as well as they should," explained lead researcher Dr. Lori Mosca, director of preventive cardiology at Columbia University Medical Center in New York City.
“Depression often helps boost the health risks associated with caregiving... In fact, measures of psychological strain were significantly higher among study participants with depression and low social support, she said. We don't know if high caregiving strain leads to depression, or if depression increases the sense of strain." (3/12/08 HealthDay News).

What did I learn from my caregiving experience?
1. Nobody is super man or super woman. We all have feet of clay and need help when we move into situations like this that are so far outside our experience base.
2. There are organizations that can help you sort through these issues. Check out www.hospitalstayhandbook.com for a list.
3. Caregiving statistics repeatedly predict the pattern I experienced, with the same outcome - death of relationship and/or disability/death of care provider.

What can I share with others who have or will experience caring for a family member or friend? If you take apart the word, “stress,” from which we surely suffer, there are answers for us all.
S Support system; friends, family, healthy people
T Talk; self-talk, talk with others
R Rest, relax; practice deep breathing, visualization
E Exercise; do something physical to relieve tension
S Self-care
S Stay in the present; avoid “what ifs?”

These suggestions are just the beginning. There are many more things you can and should do for yourself.

According to Dr. Martha Daviglus, a professor of preventive medicine and medicine at Northwestern University, Chicago, and a spokeswoman for the American Heart Association, “The link between caregiving and increased cardiac risk seen in the study was predictable, … We see the same burden in caring for someone with any kind of serious disease." (3/12/08 HealthDay News).

Whether it is a physical or emotional “broken heart,” all caregivers suffer. There are thousands of books and articles on this problem and yet, caregivers continue to struggle. I am not so blind as to believe any story will save the day. If, however, I reach one of you who struggles, with love, to care for another, it is enough. Be kind to yourself. Stop judging the inadequacy of your efforts. You are not failing your charge, just yourself.

Roderick MacIver, artist and founder of Heron Dance says the following. I agree. “We each have a spiritual current that runs through our lives--a river. Connected to that current, our work, our life, has power… When you turn your back on the current of your life, you are on your own. You are coming at life believing that you are strong enough, powerful enough on your own… Being in touch with the spiritual current means first being able to listen to oneself, being in sync with oneself. Work of the spirit requires strength of spirit.” (Heron Dance, Issue 13, 1996).

And strength of the spirit requires a connection to our self. Check in with that beautiful face staring back at you in the mirror…