Caregiver 101: How to Help Someone with a Brain Aneurysm

A brain aneurysm is a weak bulging spot on the wall of one of the arteries in the brain that could burst like a balloon. If this happens, there will be bleeding between the layers of tissue in the brain which can result in serious consequences, a long recovery and will require the help of a caregiver. Therefore, knowing how to help someone with a brain aneurysm is important every step of the way.

What can a caregiver do in an emergency situation?

Emergency situations can be chaotic, emotionally charged and your loved one may not be able to make decisions for themselves. Medical staff may not deliver information in a way that makes sense, use too much new medical terminology or not have much information at all. This can leave a caregiver feeling confused or anxious about what is happening, especially when it comes to their loved one’s long-term prognosis. Here are a few tips on handling this situation:

➡️  Acknowledge the roller-coaster ride of emotions. A brain aneurysm diagnosis, especially after a sudden rupture, can be a shocking and traumatic event. As a caregiver, you may feel an array of emotions from being overwhelmed to helplessness, fear, anger, shock, anxiety, and resentment. Whatever emotion you feel, it’s important to not feel guilty, suppress it, or feel like it is a sign of weakness. The best thing you can do to cope with this tense situation is to recognize and accept your feelings so you can move forward in a healthy way.

➡️  Educate yourself on brain aneurysms. The Brain Aneurysm Foundation’s Detection and Treatment Guide is the go-to manual that will give you the information you need to make key decisions for or with your loved one.

➡️  Familiarize yourself with key brain aneurysm medical terms. The above Brain Aneurysm Foundation’s Detection and Treatment Guide has a glossary of terms on pages 23-26. These can be printed out or downloaded to your phone so you can refer to them when talking to medical professionals.

➡️  Bring a notepad to hospital and office visits. It’s hard to remember all the details when in a stressful situation. Write down all the new terminology and key points discussed with medical professionals so you can remember what was said. This way you won’t have any problems researching it later and will be better prepared for the next time you talk with the doctor.

➡️  Ask the medical professional to pause with you. It’s perfectly normal to request a few extra moments so you can write the new information down. If you are unable to document it accurately, ask them to write it down for you.

➡️  Be prepared for the unknowns. Brain aneurysms can be very unpredictable. Depending on where the rupture occurred and the amount of blood released into the brain, the patient could experience a wide range of cognitive and physical impairment. The extent of the impact may take hours or days to figure out. Your loved one’s condition could even change each time you visit. Be prepared for such things as confusion, memory gaps, physical impairment, disorientation, emotional changes in behavior and know this is normal.

➡️  Find time for self-care. The caregiver must tend to their own emotional struggles in order to be able to provide the emotional and physical support the loved one needs. It is just as crucial for the caregiver to find ways to recharge in between helping.

What can a caregiver do for someone with an unruptured brain aneurysm diagnosis?

A brain aneurysm diagnosis prior to a rupture can be just as frightening and emotionally provoking as a sudden emergency. In addition to following the suggestions above, here are a couple other things to consider:

➡️  Discuss a plan with your loved one setting small, achievable goals. It can be overwhelming to both the caregiver and/or patient to plan all at once. Taking one step at a time will help foster good communication, avoid panic and keep emotional responses from becoming unmanageable.

➡️   Help advocate while respecting your loved one’s boundaries. It can be difficult to find the happy medium between doing too much and unintentionally doing things they don’t want you to do. Take time to listen and help them express their needs. You’ll be able to help them more this way and advocate better as a team that’s on the same page.

What can a caregiver do during the recovery process?

A caregiver position is a stressful job that requires a lot of patience, understanding and flexibility. Each brain aneurysm patient’s road to recovery is different and can vary from day to day making it difficult to carve out an exact game plan. Some will require more time and specialized therapy than others to regain their physical and cognitive abilities. The following suggestions may help a caregiver cope and support a brain aneurysm survivor in need of help:

➡️  Embrace the new norm. One of the first important steps as a caregiver is accepting and finding the “new normal.” Some patients will make a quick and full recovery, but for those who experienced a rupture, it can take a long time to improve. Certain mental and physical capabilities may have been compromised making it difficult for them to do the things they used to or altering their personality and temperament. It’s important for a caregiver to accept these changes, understand it’s not the survivor’s fault and shift their focus on making improvements together during the healing process.

➡️  Accept a slow recovery. The brain is a resilient organ meant to learn slowly and incrementally from mistakes. A brain aneurysm survivor will often find themselves progressing a step forward one day and two steps back the next. It is normal for the recovery path to be slow and non-linear. Caregivers should not view this as the loved one is getting lazy or giving up but instead, progress should be compassionately encouraged, stopping when the survivor is overtired, too anxious or stressed. Recovery should not be forced.

➡️  Keep a progress journal. Journal your loved one’s progress and look back at the survivors’ development on a weekly or monthly basis. This way you’ll be able to see the positive gains as a whole, instead of focusing on any disappointments that are bound to happen when comparing on a day-to-day basis.

➡️  Don’t sympathize, instead acknowledge and redirect. A negative outlook and tendency to ruminate on roadblocks is not uncommon. This could be because the brain aneurysm affected part of the brain that processes emotions or depression/anxiety has set in as a response to going through a life-altering event. In either case, sympathizing with the survivor will only encourage negative thoughts to continue instead of moving forward with recovery. It’s best to acknowledge their feelings so they don’t feel ignored but quickly move on to a different topic or engage in activities that get the mind off what is bothering them.

➡️  Avoid burnout and stay positive with support groups. As a caregiver, you must remember that your emotional well-being is important and crucial to the progress of the survivor’s health. Therefore, it is essential to find strategies for self-care that will help you maintain your own mental, emotional and physical well-being. Support groups offer a safe and supportive environment for caregivers to share experiences, feelings, achievements and concerns with others who have gone through similar situations. This can reduce the feeling of isolation, combat feelings of guilt or shame and provide the caregiver with options and resources to combat burnout.

The Brain Aneurysm Foundation has an online support community for survivors and caregivers at bafsupport.org or in-person/virtual meetings nationwide at bafound.org/search-support-groups.

➡️  Be open to technologies and ideas that promote your loved one’s independence. There is a difference between caring and doing. If a caregiver always acts on behalf of the loved one, they are not caring. They are only doing and possibly stunting the loveone’s growth and happiness. Finding ways to help your loved one achieve independence is a great way to help them recover and allow them to accept their “new normal.” For example, if physical impairment is making it tough to get around, help them find a motorized mode of transportation they can handle. Once mobile again, they may flourish and make gains because they feel more liberated and happier meeting some of their own needs without help.

Where can a caregiver go for more information?

Despite the fact that becoming a caregiver is a difficult responsibility that could instantaneously change your life, you are not alone. There are many more tips, resources and support groups that can help you navigate through the ups and downs of this new responsibility. For more caregiver information from the Brain Aneurysm Foundation, please visit:

➡️  Caregiver webpage: https://bafound.org/for-caregivers

➡️  Caregiver resources: https://bafound.org/for-caregivers/resources-for-caregiving

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