This is the second part of a series on caregiver burden. As mentioned in the first part, caregivers are in the trenches of the recovery battle with the brain injury survivors from the very beginning of the injury experience. They take on a tremendous amount of tasks, emotions and responsibilities which can lead to significant levels of stress. This stress can negatively impact the health of caregivers. It is vital for survivors, caregivers and the community around them to understand caregiver burden. This post will focus on some of the caregiver burden issues involved the initial stages of recovery.
Following the patient’s survival of his or her injury, the patient enters the initial stages of recovery. When a patient first wakes from a coma, it is not like the movies where the hero simply wakes up as if in a deep sleep and resumes regular activities. For most moderate/severe brain injury survivors, they enter a stage called Post Traumatic Amnesia, often referred to as PTA. During PTA, the survivor may be moving or talking but there are some key features that make it different than later stages of recovery. First, as per the name, survivors in PTA have extremely poor memory skills. A friend can have a conversation with a survivor with PTA, walk out of the room for fifteen minutes and when the friend returns the survivor will have no memory of the conversation or even that the friend had visited. Second, survivors in PTA often have temporary changes in personality. They are often more impulsive and aggressive than it typical for them. In fact, they may need medications to help calm them. They may have hallucinations or delusions. Often these delusions take on a paranoid tone such as believing that nurses are trying to kill them or that family members are trying to steal their money. Third, they generally have poor awareness of deficits and tend to act in an unsafe manner. Taken in whole, brain injury survivors in PTA can have moments in which they are quite abusive to loved ones, even though they do not truly intend to be abusive. This can be very tough on the caregivers who just went through the trauma of nearly losing their loved ones and who only want to support their loved ones’ recoveries. Moreover, due to poor awareness, the survivors may reason with, beg and plead with the caregivers to get them out of the hospital or rehabilitation facility even though they obviously need treatment. It is very emotionally straining on caregivers to constantly have to tell the survivors that they cannot simply bring them home and that they need to remain in treatment.
As the survivor improves and emerges out of PTA, these early stages of recovery can be exciting as caregivers see day to day improvements. However, this is also the time when caregivers get their first reality checks that this is going to be a long process. During the initial crisis of the injury event, the focus of the families is just on survival and families do not have an opportunity to ponder the long-term effects of the injury. As families come out of “survival mode” and begin to watch the slow steps of recovery, the reality sets in that the process of recovery is more like a marathon than a sprint. Part of the misunderstanding is that most peoples’ familiarity with injuries tend to be that of a broken bone or similar injury. The formula tends to be relatively straight-forward: the doctor operates on the injured body part, the patient takes some time to heal that body part and in a brief duration of time everything is better. Brain injuries often do not work that way, particularly moderate to severe brain injuries. A surgery cannot undo the brain damage from a stroke or car accident. The brain heals at a slower rate and active rehabilitation is necessary. In this initial stage, caregivers often begin to worry about how long will it take to recover and to what extent the survivor can recover. They begin to worry about the deficits will effect things such as relationships and work. There is often a general fear of re-injury that lasts throughout the recovery process and beyond. The day to day improvements bring hope but the slow rate of recovery brings doubt. At the same time they are experiencing their own doubts, caregivers often want to continue to give hope to the survivor that the survivor will have an excellent recovery.
During this initial stage of recovery, families also start to feel the first stress of financial changes due to the injury. Hospital bills begin to come in and at the same time income may drop due to the survivor being unable to work. Caregivers, too, have often loss significant time at work as they monitor their loved one. Many hospitals charge for parking and caregivers may spend hundreds of dollars in a single month just to spend time with their loved ones. Equipment that is not covered by insurance, presuming that the survivor has insurance, must be paid for. Often this is also the first time for stressful battles with insurance companies over identification and rehabilitation opportunities for their loved ones.
Moreover, friends and family members tend to loyally visit the survivor and support the caregiver during the injury event but as time goes on, the phone calls and visits tend to decline and the caregiver may feel more alone. Friends and family members can return to their injury lives but the caregiver does not such a luxury.
There are a few suggestions that may help caregivers during these initial stages of recovery. This is often a good time for caregivers to begin their own psychotherapy/counseling. Caregivers need to remember that they cannot do their best to support their loved ones if they do not allow themselves to be helped. The stress of caregiver burden is tremendous and often professional support is needed. For some caregivers, they may benefit from a medication regimen such as taking anti-depressants. Caregivers often benefit from support groups with survivors and caregivers who can help guide them through the recovery process (See the following blog post for more information https://tlcrehab.wordpress.com/2015/01/16/the-role-of-support-groups/) . This is also a time when brain injury education can help the caregiver understand the situation. Caregivers should ask therapists and doctors to sit with them and explain the details of the survivor’s brain injury. They should also ask for books, websites and pamphlets to help them learn more about injury. The Brain Injury Association of America www.biausa.org , American Stroke Association www.strokeassociation.org, Brainline www.brainline.org and the Transitional Learning Center blog tlcrehab.wordpress.com are good options to start the learning process.
Caregivers often need to remind others that they still support even though the survivor is no longer in a near death situation. Family and community members need to take extra effort to continue to call or visit. A simple letter or email can help the caregiver feel less alone and supported. Family or community member can be tremendously helpful by giving the caregiver a break by staying with the patient as the caregiver gets some rest or takes care of their own needs. Even an hour break just for a caregiver to get his or her hair cut is a much appreciated relief. They may also organize rallies or fundraisers to help support the emotional and financial needs of the survivor and caregiver. These rallies and fundraisers give a tremendous lift to both the survivor and the caregiver.
These are some of the pressing issues that contribute to caregiver burden during the initial healing stages and ways to help mitigate these issues. Feel free to comment below with ideas or suggestions.
Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org