Written by: Joe Niekro Foundation Board Member/Patient Advocate and Brain Aneurysm Survivor, Kimberly Chapman
Rarely do couples foresee or imagine a brain aneurysm/AVM in their future when they commit to “for better or worse, in sickness and in health, til death do us part”. Yet, it is estimated that 6 million people in the US have a brain aneurysm with over a quarter sustaining severe brain deficits.
Nothing can be more physically and emotionally demanding and burdensome than the trials a spouse faces once their partner is diagnosed with an aneurysm/AVM. Spouses, more than any other member of the family, are often confronted with the most difficult issues. When a partner becomes brain injured, roles and duties within the family structure are often permanently changed. Non-injured spouses are often perplexed to figure out methods to resolve ways to maintain income, family issues, their own needs, household management, and conflicts over medical care and treatments. It is not uncommon for spouses who’ve become caretakers to feel like their marriage has altered drastically since their partner incurred a brain aneurysm/AVM. Traumatic or severe brain injuries can cause a great deal of stress and disruption to marriage. When a partner becomes a caregiver to the other, they often feel like they are now in an unequal marriage with resentment arising from both sides.
The cognitive and behavioral changes associated with brain aneurysm/AVM alter the survivor, as a person and a partner. It’s not unusual for the survivor to have new personality traits, anxieties, limitations, mood variations, frustration tolerances, and lack of self-control; which only further complicates the situation. Spouses become surprised by how these changes in the survivor will alter the status of the marriage altogether. These changes have led many spouses to state they feel like they are “married to a stranger” or not married to the person they fell in love with. Often the non-injured spouse is left trying to figure out how to incorporate their partner into the already well-established family structure. Sometimes consequences of the brain injury require the survivor need supervision and too often the spouse is forced to take on a parental role in which discomfort and tension is felt by both partners. Some spouses accept the role of caregiver and are willing to surrender the previous role of equal partner within the marriage. But the task of coping with the role of caretaker is a lonely and challenging one.
Way too often, when a brain aneurysm/AVM survivor returns home from the hospital, the spouse doesn’t fully understand how much time and energy they will be spent playing the role of caregiver. Nor are they equipped with enough information about the long-term effects of brain damage. It can go unnoticed by extended family members, the amount of dependency placed on the non-injured spouse. They rarely see the sacrifices made by the spouse to help their loved one make a better recovery or enjoy a better quality of life. It is not uncommon for very little support and assistance to be offered by outside family members, which result in a strained relationship between the caretaking spouse and family over the lack of assistant they receive.
Spouses of the survivor will elude get-togethers with couples they once socialized before the injury occurred. Reluctance to place the injured spouse in social gatherings could be due to the survivor’s irregular or embarrassing behavior. Over time, those once considered to be “close friends” might begin to migrate away. A woman in our online forum stated, “I’m married, but since my husband’s behavior can be similar to the ups and downs of a roller coaster, the invites from our friends stopped long ago.” Isolation and loneliness becomes an issue for both spouses in the marriage. The non-injured partner must now make an effort to find sources of social connections for both partners.
In any marriage, when a person takes on new responsibilities or has to learn how to handle new duties, they will experience higher levels of stress. Partners to brain aneurysm/AVM patients have significantly more responsibilities and find they have less and less time for their personal interest. Neglect of self is a primary issue with caretakers that will lead to unhealthy physical and mental conditions. Eventually, emotional exhaustion can occur which is known to develop into compassion fatigue. To stay healthy and happy, every spouse who is married to a survivor needs to seek assistance from the caregiving responsibilities. Understand that reaching out and asking for help is not a sign of weakness. Nor does it mean that you don’t care or fully love your spouse.
WHERE SHOULD A CAREGIVER SEEK HELP?
Helpful services such as in-home health aides or personal care assistants can provide the spouse with respite from the caretaker role. In-home healthcare professionals can provide various services to the family of a brain injury patient. Spouses who receive support and assistance will find that they have more time to enjoy personal interest and will see their stress levels and tension decrease, lowering their chance for burnout.
Never underestimate the power of a support group. As most hospitals and social workers will suggest, joining a brain aneurysm/AVM support group is a fantastic way for both spouse and survivor to have a social outlet to share their stories, experiences and thoughts with others going through similar situations. Not only are they a means of getting peer- to-peer support, but they are full of resources to find additional information about brain injuries. These meetings are fantastic ways to voice concerns or seek new methods of coping.
Support and assistance can be found by building relationships with the survivor’s family. Members of the family can contribute breaks from caregiving for the spouse. This also can be a way for the family to build the relationship with the survivor and remain active in their life.
Programs provided by the National Disability Rights Network can help with such services as health care, transportation, personal decision-making and Social Security disability benefits. Referral services within this organization can help people with brain injuries find solutions to problems involving education, discrimination, and employment. To find out more about programs under this agency contact, visit www.napas.org or call (202) 408-9514.
Brain Injury Association of America (BIAA) or the Brain Injury Alliance are national programs with state affiliates. These organizations can help in providing information, education and support to individuals, families and professionals affected by a brain aneurysm/AVM. To locate your local chapter for assistance visit the Brain Injury Association of America at http://www.biausa.org/. Or the Brain Injury Alliance at http://usbia.org/join-usbia/benefits-of-joining/.
If you are one of the 6 million people in the US who have a brain aneurysm/AVM or a spouse to a survivor, please visit The Joe Niekro Foundation online forum at www.facebook.com/groups/aneurysmavm. This closed online group consists of people from across the globe coming together to support one another, share stories and feel welcome in a safe environment where they are not judged and can simply be themselves. You’ll find that you are not alone and there is a huge group of people faced with similar situations just looking for people like you to connect with.
And please mark your calendars for It’s A Brain Thing…It Could Happen to You…our nationally produced online radio show designed to speak to brain injury patients from all parts of the world. We feature guest speakers, answer calls & questions and discuss how to cope with the challenges that come along with a brain injury. Join us the first Monday of every month from 5:00 p.m. to 7:00 p.m. (Pacific Coast Time) on www.braininjurynetwork.com. To listen to our most recent show of, click here or to find out more information on The Joe Niekro Foundation, please contact us at [email protected] or visit or website.
Remember, life is a marathon, not a sprint and no matter what challenges we are presented, with a strong support system – WE CAN MAKE IT THROUGH ANYTHING!!!!
