Traditional marriage vows generally contain the words "through sickness and in health." For some couples, chronic sickness in the form of a painful disease can come close to defining their lives. I set out to see how these caregivers coped with this change, chronic pain, in their marriages.
Research first led to Lynn Greenblatt, a family caregiver for her husband who was diagnosed with Complex Regional Pain Syndrome (CRPS) in July 2008. I began by asking Lynn how she provides the care that her husband needs.
"My husband Seth has been in constant severe burning pain from shoulder to fingertips in both arms, from hip to toes in both legs, in his back, temples, parts of his tongue and mouth for almost seven years," explained Lynn. "While he is on medications to treat his nerves and to curtail the pain, he regularly gets twitches and muscle spasms alongside breakthrough pain. He knows that the medications are working as best they can and have kept his CRPS from spreading more quickly. This is important because when his neurologist tried reducing the dosages, his pain increased and spread to other parts of his body."
"The only thing that gives Seth a break from pain is sleep, which is erratic at best - CRPS takes away the ability to fall into deep sleep, which is when the body truly rests and renews," Lynn continued. "Because of this, I make sure that when he's sleeping, nothing disturbs him. When he is awake and in worse pain, I adjust his immediate environment to make it more soothing by dimming the light and speaking softly. Distractions such as movies help him cope with the pain. I also bring him meals that I know he enjoys. We have treats and we joke. Laughter is the best medicine sometimes."
When I asked Lynn if her husband complained often, she said, "It's admirable how much suffering Seth endures. It's heart-breaking, actually. He does let me know how the pain is and how he's coping with it, but it's never a complaint."
"Our go-to comforting device is each other's company and humor," Lynn said. "When the going gets really tough, I bring him chocolate donuts or anything with coconut!"
Self-care for Lynn
Caregivers need to take care of themselves and the wise ones find ways to do this, no matter what. Lynn seems to have known this instinctively.
"I attended a few support groups in the area and provided comments on a couple of forums when Seth was newly diagnosed," Lynn said."However, I felt that I was doing well with my new role as a family caregiver, so I did not attend any more support groups or continue with the forums."
"I had found so many great resources online and locally after searching for information on caregiving, I wanted to share them with other family caregivers via my website, CaregivingCafe. In March 2014, I also created Caregiving Cafe, a support group for all types of family caregivers in Southwest Austin. This helps me tremendously, as we support each other, chat, share resources and tips, and enjoy each other's company."
"I don't have respite care at the moment, but because my husband rests or sleeps from about 8:00 am-11:00 am and from 1:00 pm to 10:00 or 11:00 pm, every day, I have most of my days free. I have lots of tasks to do, both caregiving and non-caregiving, but my agenda is flexible. I am fortunate to have lots of time to myself and that my husband does not need help with ADL's."
Here are some of Lynn's resolutions for herself:
- Self-preservation: Attitude matters! Life will always present problems; I mean challenges! How we approach them makes all the difference. I see problems as puzzles that need solving, so I tackle them by researching, asking those who may know, thinking out-of-the-box and believing that an answer exists somewhere.
- Stay social: Get together with friends, family and neighbors. Do not wait for them to call. You can start the conversation and keep it going.
- Ask for help: Many people assume that family caregivers do not need or want help because they are not asked or their offer to help is not taken. Then the communication stops because each one is waiting for the other to come forward.
- Faith: My Faith sustains me daily—I never feel alone.
- Humor: It is okay, even necessary, to laugh!
- Show your love: Show the people who are special to you that they are special to you.
- Become an advocate: I have become an advocate for my loved ones and have learned to speak up for them. This is a very important part of being a family caregiver.
- Diplomacy and gratitude are more effective than aggression: I have needed and gotten the cooperation of nurses, doctors, insurance companies and others by being respectful and friendly, yet assertive. I have taken cookies to the doctor's and pharmacy staff to thank them for their service.
- Gratitude: I am grateful for being healthy enough and able to be a family caregiver. I know it could just as easily have been me who got CRPS. Gratitude is especially helpful when I am tired late at night. I imagine what my husband feels like.
- Caregiving is a family affair: I strongly believe that teamwork works. Family caregivers need to create a care team that will pitch in for various tasks.
- Resilience: We can bounce back from any adversity. Put things into perspective. Educate yourself on the subject, instead of jumping to negative conclusions.
- Hiccups happen to everyone: Re-think, search for a new way forward. Choose to move past the challenge and you will find a way.
- Go with the flow: Caregiving can undo the best-laid plans. So anticipate and take steps to take care of situations that may come up in caregiving, but accept the fact that something else may come up—and it will.
- Invest in yourself: Take good care of your own health or you may lose it. You owe it to yourself. How? Where there is a will, there is a way. Check online and local resources. Attend support groups, teleconferences or workshops for guidance.
A Spousal Caregiver Shares his Story
Phil Coleman provides care for his wife, Marsha, who suffers from chronic pain. I asked Phil what the biggest challenge he, as a caregiver to a spouse who is always in pain, faces.
"She doesn't always tell me when the pain is getting to her," Phil said. "Her pain is, by definition daily, as in all the time. Some days are worse than others. I may not always realize when it has 'broken through.' Also, I may not always be at the top of my game mentally or emotionally, so my reaction may not always be optimally positive or appropriate."
When I asked Phil if he has respite care he said yes. "I am able to take periodic vacations," Phil said. "I have excellent family support here in town. Also I know of community and in-home healthcare resources and have used them."
For self-care, Phil does a number of things. "I do daily sitting meditation. I also do regular mindful breathing while completing daily household activities, practice a regular rigorous exercise program and cross training, participate in AGE of Central Texas's Caregiver Support meetings, confide to a small circle of close friends and take naps. I read literature of a spiritual nature daily, keep a journal and make time for personal activities, such as writing, listening to music and reading.
"I suggest that caregivers be open to expressing and appreciating whatever humor reveals itself in any given situation. I try to realize as often as I can that blame and guilt are not part of the equation."
A Counselor Weighs In
Since professional input is often helpful when we're examining our caregiving issues, I asked Ann Becker-Schutte, Ph.D., who is a Licensed Psychologist and has a website on mental and physical wellbeing, for her thoughts about family members who provide care for spouses (and others) in chronic pain.
"Being the primary caregiver for a spouse with serious illness creates several key emotional burdens," Ann said."The first is that it is incredibly painful to watch someone that you love suffer and to be limited in your ability to alleviate that suffering. The second is the expectation that caregivers often place on themselves to be available 24/7, without relief. Caregivers often report feeling guilt about their own fatigue and need for a break. Because of these challenges, it is incredibly important for primary caregivers to have support of their own."
Thank you to Lynn, Phil and Ann for their excellent advice. From a personal perspective as a family caregiver, their advice seems to spotlight two main points.
- One is that caregivers can often stay more focused if they seek ways to maintain a relatively positive outlook.
- The second—which goes hand in hand with the first—is that some form of self-care is essential to long-term caregiving.
Accept that you are not in this alone and seek support and information from all available resources. Whether you seek help physically in your own community or from the vast array of knowledge on the internet, choose to be open and honest. Be proactive, share and take care of yourself.