Coping as a Caregiver, a Husband's Perspective
While serving as co-facilitator for the Male Caregivers sessions at PHA's International Conference in Houston, I was asked about the "tactics" I used as a caregiver to cope with certain situations. It caused me to think about the 11-year journey I've been on with my wife Debbie. My path to being on the facilitator side of the session table has been "twisty" at best and is still evolving. This caregiver role is a stressful job.
Coping with My Wife's Diagnosis
My reaction to the "imminent death" diagnosis was probably like most other caregivers: shock, denial, anger, bargaining, depression, acceptance. Some may recognize these emotions as the classic stages described in the work of author Elizabeth Kübler-Ross in her book On Death and Dying. Looking back, I had them all; I just didn't know that was the emotional minefield I was traversing at the time - and still am! After all, I'm a guy; we don't talk about things like that (at least not easily). To quote my friend Carl Hicks, "This is a trail of tears we're on. They can be happy or sad ones." I realize now that through all my stages, there was always an element of hope that things would get better. That's even more so now. The PHA conferences always replenish that part of my soul that clings to "hope."
I weathered my initial shock and denial by immersing myself in learning about the disease. When the anger phase hit, I wanted to fight back. If I was hoping for a cure, then I could help with raising money for research. Fundraising was how I turned my hope into an action verb!
Along the way I've done my fair share of "mental bargaining" with my higher power — and probably always will as long as this journey continues. A few years into the journey while watching a news story on the signs of depression, I realized the interviewer could be talking about me. I think I might have even gotten angry with myself for thinking I could be "depressed" and, therefore, WEAK. I didn't have time to be weak and sick. So I educated myself on the signs of depression and developed some personal coping activities. I plan (and occasionally accomplish) home improvement projects. I draft mystery book plots. I regularly take "alone" time for myself. I have a weekly golf outing at Debbie's insistence.
The Acceptance Phase
The acceptance phase is the really nice place to be. Your attitude (and hers) is the key to successfully coping with the illness. As the caregiver, you have to come to understand how the "patient" wants to deal with his or her condition and adjust your style and personality to best provide support without losing your own identity. Your significant other — the patient — will change how he or she copes with the situation over time. So you've got to be on your toes and ready to "go with the flow." The change on their part may be gradual, quick or like an electrical sine wave: up/down, up/down. Always remember: good days, bad days.
Literature approved for the Narcotics Anonymous program titled In Times of Illness carries a useful message for the caregiving situation: "Learn to accept the reality of life, which sometimes brings illness or injury. Illness is very stressful. Coming to terms with illness is a process ... Acceptance of something does not necessarily mean we like it. We can dislike something and still accept it."
Debbie is more succinct in her explanation of accepting the reality of the situation. She asks, "Do you view yourself as a victim or as a survivor?" A victim lets other people or circumstances define them and tell them how to live their life. A survivor decides to live their life despite the limitations that have been put upon them. Remember I said the key is attitude: the caregiver's and the patient's. Debbie is a survivor. Pulmonary hypertension does not define her. It's a part of the picture to deal with, but not the whole picture. She still has goals and strives for a happy and productive life. Her attitude makes my job as caregiver that much easier — no piece of cake, but easier.
Seeking Out Support
1. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
3. Grieve for your losses, and then allow yourself to dream new dreams.
4. Seek support from other caregivers. There is great strength in knowing you are not alone.
5. When people offer to help, accept the offer and suggest specific things that they can do.
Every job, including your "job" as a caregiver, comes with its own set of stressors. But every job also comes with support systems. One of my first jobs as a teenager was delivering newspapers for the Temple Daily Telegram. The stressors: getting up early every day to deliver my route by 6 a.m.; working in the rain, cold, dark and sleet; dealing with loose dogs (I remember some very big, fast dogs); and collecting the monthly bills from more than 200 customers. The support systems: papers were delivered to my pick-up point by 3:30 a.m., bills were mailed to the customer by the end of the month, I had a list of substitute carriers I could call at the last minute if I was unable to perform my deliveries.
I joined the U.S. Air Force in 1968. I retired 26 years and two wars later, and you can well imagine that the stressors associated with that career would fill a book. All along the way there were support systems for training, administration, logistics, operations. No company trains and supports the worker like Uncle Sam.
The point: every job has its support systems and so does this caregiver role. Learn them and use them to make your journey a little less twisted than mine. Most areas have community and social organizations that can be helpful. Numerous caregiver organizations are on the web. Contact PHA or just review the ton of information on its website. You'll start to develop your own framework for developing coping strategies. I know that guys don't like to talk about these things or share with others, but when you get bold enough (as I hope you will), reach out to others in your situation. Learn about the support systems for this caregiver job and use them.
Every job has its rewards. For you that may be vacations or time off, hobbies or volunteer activities, certain foods, sporting events. Some of my coping mechanisms are also my rewards. Develop a list of events and activities that you feel are rewarding; then pay yourself regularly. It makes the job easier and the journey a little less rocky.
By Jim Wilson, PH caregiver and PH Email Mentor. Contact a PH Email Mentor
This article first appeared in Pathlight Winter 2009.