Chronic, debilitating pain impacts carers in serious and legitimate ways. Often when a patient comes to Back Clinics of Canada they are accompanied by a spouse or close relative (the carer). The patient is usually well along on their journey to find a true healing solution for their severe back pain or neck pain. Pain can be caused by sciatica, bulging or herniated discs, facet syndrome, degenerative disc disease, spinal arthritis or stenosis. The doctor can obviously see the affects of pain on the patient. He can also often see the impact on the carer. The stress and tears are not always so easy to hide. The carer is equally eager to find a true healing solution for their loved one.
To care for someone on a constant basis, and not be able to provide real relief, can cause stress, a feeling of helplessness, frustration, anger, and even depression. Health Canada reported in its 2002 National Profile of Family Caregivers that 70 percent of carers report their role and responsibilities are stressful. Eighty percent report having emotional difficulties themselves. About 50 percent of carers report difficulties with financial or physical health. Seventy percent need relief from their caregiving duties either frequently or occasionally.
A carer wants to do everything possible to help their loved one who is suffering. But trying to be the ultimate carer, providing for and propping up a loved one’s physical and emotional needs, can itself be debilitating. In addition to looking after the patient, the carer may also be tending to the needs of children, earning money, and keeping the house running (including cleaning, cooking, laundry, errands, driving, etc….). Running oneself into the ground and passing out from exhaustion (rather than pleasantly falling asleep) each night is detrimental to the carer’s own physical and mental health.
A carer is suffering quietly and less obviously. The extreme demands that can be placed on a carer and the imbalance that can result are serious issues that must be addressed and corrected. A carer must first be good to themselves so they can be the best helper and advocate for someone else.
Balance cannot be emphasized enough.
A woman who nursed her spouse through a 10-year journey with Alzheimer’s gave up her life to be by her husband’s side, 24/7. She missed out on significant time with her family and friends. When she emerged from this period of her life, she found some relationships were no longer there. Her home was a mess. Her finances were a mess. Her own health deteriorated and she is now dealing with serious health problems of her own.
An example of balance: another woman recently nursed her husband through a sudden and terrible illness. She made it a point to have healthy meals prepared for herself, exercise daily, and get a good night’s sleep every night. She made sure to do something for herself regularly. Her focus on caring for herself enabled her to be the best advocate for her husband and be emotionally strong throughout their ordeal.
When caring for someone with chronic pain, the sense of helplessness and endlessness (because nothing seems to provide true healing relief) particularly can take a toll on one’s emotional health.
Carers behave in different classic ways. Some put their own lives entirely on hold and commit themselves 24/7 to caring for their loved one. Others respond the opposite way and remove themselves physically and emotionally from the “patient” by immersing themselves in work and extraneous activities. They manage by distancing and distracting themselves.
From either approach to caregiving there can emerge frustration and resentment. Carers, when asked, will report that they feel they have had to put their own life plans and dreams on hold. Their social life outside the family ebbs. Intimacy they once shared with a spouse is quietly tucked away and gone. They may not be able to give much needed time and attention to children or other family members. They may begin to neglect themselves. Professionally, carers may have to pass on promotions or offers of greater responsibility at work because of demands at home.
Health Canada’s National Profile of Family Caregivers reports the effects on employment. More than 25 percent of caregivers indicate their employment situation has been affected by their caregiving responsibilities, either in terms of quitting/retiring early or having had to make other changes in their work situation (e.g. schedules, role). Leaving a job entirely is more widely reported by women and younger caregivers looking after a younger family member (e.g. under 45 years of age).
Among those employed, caregiving has been disruptive to their work, either to a significant (19%) or some (33%) degree. This type of impact is greater among those who had no choice in taking on the role, which is often the case.
It is always difficult to balance work and caregiving responsibilities. Sixty-six percent of caregivers report they benefit from flexibility provided by their employers, in terms of adjusting their work hours or job responsibilities in order to accommodate their caregiving duties. A small percentage (17%) report they have not benefitted in this way, while a similar proportion (17%) are self-employed (and so are responsible for their own workplace situation). Regardless how accommodating employers may be, flexibility at work does not always provide the emotional and physical relief that the caregiver needs.
Support for the Carer
Caring for a loved one can help to forge an incredibly strong unbreakable bond between the two. Or, it can drive in a wedge of frustration and resentment that ultimately drives them completely apart.
While a carer may be well-equipped to handle the physical aspects of their loved one’s pain, they may flounder when addressing the emotional and relationship issues that chronic pain can cause.
Besides making effort to find balance between satisfying personal needs and caring for a loved one, it’s important that a carer have an outlet through which to express what they’re experiencing.
When trying to manage chronic pain, especially, it’s important to have open and honest discussions and not hide behind a falsely pleasant countenance. A woman whose husband has been suffering with debilitating and serious pain for more than a year was feeling overwhelmed and resentful towards her husband. As primary carer, for 18 months she has only been doing things for others. Between her husband, the children, maintaining the home and all that that comes with, she began a downward slide physically and emotionally. She took on the unfortunate role of “martyr” and it was destroying her and ruining her relationship with her husband.
With encouragement of a third party, she wrote up a document in which she listed with great detail how her husband’s pain was affecting her. She expressed her frustration at the things she had given up, the daily burden weighing on shoulders, her resentment at being a constant giver, her dashed plans for the future, their lack of intimacy, her rapidly disappearing social life, and her permanent exhaustion and stress. Her husband read her document and the two sat together in tears, as walls of frustration and anger began to crumble. The exercise was cathartic and healing. Now they are more of a team. She believes caring for her husband is one of her greatest responsibilities, and he understands the responsibility he has to support his wife emotionally, and show gratitude and appreciation to her regularly.
He still lives with pain, but they are both managing better, and she no longer feels like a victim.
Back Clinics of Canada believes in a team approach to health. Doctor and patient are equal partners. So too the carer is an essential member of the team. But the carer is also a loving, feeling person who has needs that cannot be ignored. Having pain does not give a patient permission to be selfish, or to be un-empathetic. Often it is a regular dose of appreciation and gratitude, combined with balance in the physical/ emotional/ spiritual aspects of life, that can turn a caregiver from victim to loving healing partner.
You deserve a pain-free life.
Dr. Ron Nusbaum
