Tag Archives: family

Open Communication

The brain injury experience is a remarkably complex one.  Overnight, so many things change and so many adjustments need to be made.  Throughout this experience, brain injury survivors have goals, concerns and aspirations.  Survivors’ loved ones will have their own goals, concerns and aspirations as well as they come to terms with their own roles in this new and dauntingly complex experience.  These two sets of expectations may or may not fully match up with one another.  Survivors and their loved ones will all try their best to achieve desired outcomes.  Sometimes  differences in respective desired outcomes can lead to conflict.  One of the most common contributing factors to such conflict is poor communication.

Family members, injury or no injury, tend to make assumptions about one another.  In fact, we all engage in some form of attempted “mind reading” in which we guess at what another person is thinking.  For instance, if one person pauses to look at a second person prior to walking through a doorway that second person may “mind read” and think, “The other person is looking at me because he wants me to enter the doorway first.”  There are no actual words spoken in this momentary exchange, only valid assumptions made.  This method will generally work well enough in simple situations, but problems  arise when we engage in such “mind reading” in place of actual open communication regarding more substantial and  important issues.  A simple look or smile does not say “I am hoping that a month or two after discharging from therapy I can return back to working and driving” or “I am worried that my son will want to return to mountain climbing where he could fall and suffer further brain injury”.

A good place to start open communication is with a family meeting explicitly organized to talk through the goals, concerns and aspirations of all involved.  The meeting should be planned in advance and all parties informed of its purpose.  This gives each family member time to organize his or her thoughts about pertinent issues.  Many survivors benefit from writing down a list of topics they’d wish to discuss at this meeting in order to ensure that they don’t forget to raise a given subject.  A meeting of this sort need not necessarily determine the final word on any topic.  In fact, it can be a good idea to state from the start of such a meeting that participants are in no way required to (and may not even be expected to) agree with what others are saying.  Particularly at the first meeting of this sort, it is not important to make decisions regarding the future.  Instead it is more important to open the lines of communication so each person can know what all others are thinking and “mind reading” can be avoided.  Opening the lines of communication in such a formal manner may seem awkward to some, but it helps ensure that the goals, concerns and aspirations of each family member will actually be discussed and addressed rather than being lost in any number of side conversations.  Once these lines of communication are opened and everyone has a chance to freely discuss thoughts and sufficiently convey perspectives, it is much easier in the future to re-visit these topics in a constructive manner.  Open communication will ultimately allow family members to walk hand-in-hand into the future with less conflict.

 

Learn about brain injury treatment services at the Transitional Learning Center!  Visit us at: http://tlcrehab.org/

 

How Can I Support A Caregiver?

As modern medicine improves and our population ages, more individuals are able to live longer with serious health issues including permanent deficits resulting from a brain injury.  This notable demographic shift places more loved ones in the position of serving as long-term caregivers.  These caregivers need all available support from those around them but many of those capable of offering assistance are simply unaware of how best to help.  Here are a few quick suggestions on how to support caregivers:

1.     Call them and ask how you can help.  Caregivers may feel shy or embarrassed to initiate requests for help but are often far more receptive to assistance if it is offered.   This gives caregivers opportunity to request specific aspects of help most needed at a given juncture, and they will certainly be grateful for all help shared.

2.    Offer to have the caregiver and survivor over for a meal or to deliver a meal to them.  With all of the responsibilities that caregivers meet on a daily basis, having someone else take care of even a single meal can be a source of welcome relief.

3.    Be there to listen.  Many caregivers feel overwhelmed by their experiences.  A friendly phone call or visit with a supportive ear helps relieve some of this emotional burden.  Knowing that others care about their well-being is very important for caregivers in maintaining their own emotional health.

4.    Be a friend to the survivor.  After their injuries, many survivors find that their social circles quickly shrink.  Some caregivers can find themselves serving as the only social outlet for the survivors in their lives.  This can be a source of tremendous additional stress in the life of a caregiver.  Being a part of the survivor’s social circle reduces the need for the caregiver to fill all of these social roles.  Moreover, the survivor is sure to appreciate this as well!

5.    Offer to spend time with the survivor so the caregiver can spend a little time tending to his or her own needs.  As a result of devotion to meeting needs of a survivor, it’s all to easy for caregivers to end up neglecting their own.  A few brief hours just to cover an unhurried trip to the grocery store, hair salon or doctor’s office (or simply to enjoy a quiet cup of coffee on their own) can do wonders for a caregiver’s quality of life.

6.    Take a moment out of your day to send a card, e-mail or flowers.  Sometimes we don’t have a lot of time to spare for lengthy calls or visits but a quick note to say “hello” tells the caregiver that they are not forgotten.

Hopefully this list will give you ideas to start reaching out and supporting caregivers!

Learn about brain injury treatment services at the Transitional Learning Center!  Visit us at: http://tlcrehab.org/

Life, Brain Injury and Repairing with Gold

There is a fascinating art form originating from Japan called “kintsugi” (a name formed from the Japanese root words meaning “golden” and “joining”).  In this form of art, broken pottery is repaired by using lacquer mixed with gold, silver or platinum.  Rather than being hidden, these cracks are instead highlighted, enhanced and made to reveal an entirely separate and distinct beauty.  Kintsugi is connected to the philosophy of “wabi-sabi” which means “finding beauty in broken or old things”.  This is not really a philosophy of items but a deeper spiritual concept informing a healthy approach to the world around us.

This idea of making the cracks more beautiful rather than trying to hide the break is an amazing metaphor for post-injury growth.  Survivors should not feel the need to hide or be embarrassed by their injuries.  Survivors never asked to have brain injuries, the events simply happened.  But there is a great deal of opportunity to use an injury and the rehabilitation process to take beautiful steps forward in life.  Some TLC patients have taken their experiences and used them to educate others about brain injuries.  Rather than shying away, they put themselves out front and center so as to benefit others in a powerful way that typical rehabilitation professionals do not have access to.  These survivors can speak from the authority conferred by actually having lived through the injury experience, lending their words an innate credibility that similar statements from health care and rehabilitation professionals can sometimes lack.  Other TLC patients have used their injuries as impetus to reach out to family and rekindle strained relationships.  Relatives who had not spoken for years were able to be reunited through response to these injuries.  Still other TLC patients have used their injuries to take their lives in healthier directions, such as returning to school, getting better jobs or cultivating sobriety.  Each of these steps forward is a way of taking the breaks in life created by brain injuries and repairing them with a “golden joining”, so that the survivors engage the world in an undeniably changed but potentially more beautiful and impactful way than before those changes wrought by their injuries.

Learn about brain injury treatment services at the Transitional Learning Center!  Visit us at: http://tlcrehab.org/

 

But Are You Getting Help?

Following a brain injury, family members will often spend every possible moment dedicated to efforts in support of an injured loved one and devote special attention to helping that survivor get the best care possible.  They with rare exception will spend countless hours on the phone battling insurance companies and filling out forms.  These family members must deal not only with stressors directly related to worrying over a  loved one’s health, but must make peace with planning for a suddenly very different future and must manage (sometimes alone) a freshly revealed terrifying financial mine field.

Brain  injury survivors themselves also face an enormous number of stressors as they struggle to regain command of basic skills and learn different ways to perform common tasks.  However there is a major difference in this regard between the brain injury survivors and their family members, particularly while the survivors are in rehabilitation.  The brain injury survivors are surrounded throughout the day by professionals trained in the treatment of brain injury who can help with mood, education and adjustment.  Survivors merely need look to their immediate surroundings to find an abundance of professional help to address any difficulties.  Family members generally do not have anything approaching such a level of support so readily available.  With all this in mind, it becomes clear just how thoroughly brain injuries are in fact a family affair.  All members of a family are affected, not just the brain injury survivor.  Likewise, all family members are part of the team necessary for managing long-term effects of the injury.  It is important that all members of the team (not just the survivor) are receiving the help and support that they need in order to adjust to these major life changes.

At TLC, staff commonly ask survivors’ families, “Are you getting help?” and “How can we help you through this process?”  It is important that family members do not neglect themselves while giving all they can to aid injured loved ones.  Such care taken is in the best interests of both the personal health of the family members in question and the optimal well-being of the survivors they support.  Caregivers with high stress levels often find themselves more susceptible to physical illnesses than the average person.  A family member side-lined by illness can offer only a fraction of the aid and support he or she would wish to.  Further, family members deserve to be allowed to live their lives to the most complete level of happiness possible (just like the survivors deserve to).  Put simply, if these family members are struggling themselves then they are placed in a severely disadvantaged position from which to help the survivors in their lives.

Family members of survivors should consider personal therapy and support groups as aids for their own psychological and spiritual adjustment (Both the Brain Injury Association of America and the American Stroke Association offer listings of local support groups).  These family members can often benefit from reaching out to friends and community resources in order to better address the management of difficulties.  Seeking help is not a sign of weakness but is instead a common sense step taken in the interest of maximizing both individual and family success and happiness.  Brain injuries are complex and stressful.  Family members should not pretend to be super-humans capable of handling anything and everything.  They should actively ask doctors and therapists for information on brain injury prognoses, education resources and proven strategies helpful in planning for the future.  Overall, one of the most important ways that family members can contribute to the advancing well-being of survivors in their lives is to remain sufficiently mindful of their own.

Learn about brain injury treatment services at the Transitional Learning Center: http://tlcrehab.org/

Caregiver Burden And the Initial Injury Event

Families of brain injury survivors are often the unsung heroes of the injury experience.  They are the individuals who insisted the doctors not give up on their loved ones.   They are the individuals who spent the sleepless nights on uncomfortable hospital chairs and stressful days trying to hold a chaotic home life together.  They battled the insurance companies for hospital and rehabilitation coverage.  They support the survivor in countless ways during rehabilitation and then beyond the point when formal rehabilitation services conclude.  However, many family members and friends fail to adequately appreciate the burden that a caregiver is under.  Even some of the primary caregivers themselves may not fully recognize the difficulties they are experiencing.  The stress and problems due to caregiver burden can lead to those caregivers experiencing a decline in both physical and mental health.

When a person is injured, families often get a sudden call from the hospital warning them that they must come as quickly as possible because their loved one is hurt and may die.   It is important to appreciate this terrifying experience.  Life is instantaneously turned upside-down.  Family members run off to the hospital not knowing what to expect.  Often they come to an emergency room to find their loved one hooked up by a number of tubes and hoses to a variety of machines.  In the case of an accident, the loved one may well be horribly bruised and bleeding with broken limbs.  Doctors likely will come over to advise the family of the terrible news and to inform them of the potential severity of the injury, often relaying death as a possible consequence.  Family members are thrust into the position of caregivers required to make life-and-death decisions.  They may be asked to consent in their loved one’s place for complex surgeries such as a craniotomy (in which part of the survivor’s skull is removed to counter swelling and bleeding in the brain).  Even with these life-saving procedures, families are warned that their loved one may not survive.  This may then leave families forced to wait on pins and needles for days on end.  Their loved one may be in a coma for days, weeks or even longer.  During such a period, family members may rightfully worry whether their loved one will ever wake up at all.  The newly injured person may suffer setbacks such as seizures or infections such as MRSA, each of which bringing with it new risks and fears.  At every step family members are forced into the role of caregivers, being updated by doctors and attempting to make the best of often unpleasant situations.  In some cases, family members are the first to find their injured loved one following the brain injury or actually even had the misfortune of watching the injury as it happened.  In these cases there is the added terror of having to summon an ambulance while helplessly watching as a loved one suffers.  This can be not only an incredibly scary moment but also an incredibly lonely moment as the family member stands alone, staring at the clock and hoping the ambulance will arrive in time.

These injury events are often the start of the caregiver burden experience.  The caregivers undergo a physically and mentally exhausting experience and though their loved one may survive, the injury event experience often leaves a permanent emotional scar.  This is a traumatic event, similar in some ways to the trauma someone may experience watching a fellow soldier get shot in battle.  There are feelings of fear and helplessness as little is left to do but watch as a loved one fights to survive.  Caregivers may have nightmares regarding their loved one’s injury.  They often go throughout the day worrying that their loved one will suffer subsequent injury and decline or even worse, die.  In some cases, caregivers blame themselves for their loved one’s injuries.  They may tell themselves, “If only I hadn’t let her have that last drink, she would have never been in that accident” or “If only I’d made more of an effort to ensure that he’d eaten better, he would have never had this stroke”.  For some caregivers the date of the injury becomes an anniversary of a new life.  For others it will forever be known as the anniversary of a death of life as they knew it, no matter how much their loved one improves.

With this in mind, it is vital for caregivers to acknowledge the enormity of the injury event and to allow themselves to work on the resultant emotional experience.  Caregivers need to give themselves permission to reach out for help and support.  It is important for those in the caregivers’ lives to help support these caregivers and provide a safe space for them to share their experiences (of course only up to the level with which the caregivers are comfortable).  Often, rehabilitation therapists are the first to notice the caregiver burden and to offer to help caregivers with these abundant concerns.  In many cases, caregivers benefit from counseling and/or psychotherapy in efforts to work through their emotional experiences.  A well-defined medication regimen appropriately tailored to an individual’s needs can also aid substantially in attaining emotional balance.  Some family members may benefit from meeting with clergy so as to aid in their spiritual recovery from this experience.  Also, brain injury and/or stroke support groups can be very useful in managing the emotional impact of this experience.

I hope this post shed some light on the caregiver burden as it specifically relates to the initial injury event.  Feel free to comment below with any questions.

Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org

The Role of Support Groups

Going through life with a brain injury can be a remarkably difficult experience for a brain injury survivor.  Life has changed, often in many dramatic ways.  Sometimes utilizing the most basic of skills, such as using the restroom or remembering to turn off an oven, can present the most complex of challenges.  Life is often just as hard (and in some aspects can be even harder) for the survivor’s family.  Everything has changed for them, too.  Family members often find that new roles are now required of them and that new stressors now confront them at every turn.  A wife may now find herself serving as her husband’s primary caregiver.  A brother may now necessarily be conscripted as his sibling’s chauffeur to constant doctor’s appointments.  On top of all this, there is so much to learn in a field with which both survivors and family members almost always have little to no previous familiarity.  This can make for an incredibly lonely experience.  Survivors and family members may ask themselves, “Is there anyone else in the world who knows what this feels like?”  While the brain injury survivor is a patient in an inpatient rehabilitation program (a very common experience in post-injury life), the survivor can often rely upon the camaraderie of fellow patients.  Family members may become friendly with the family members of other survivors and chat on a regular basis.  Both survivors and their families will have regular contact with staff who are able to provide support and knowledge.  However once the survivor discharges from that inpatient facility, he or she suddenly has little to no contact with other brain injury survivors.  Families lose contact with each other and no longer have available as an option just popping in to a therapist’s office for a quick question.  This is when the brain injury experience can be its most lonely.

 
Support groups can help fill this gap.  Support groups are groups of individuals with similar experiences that meet on a regular basis to discuss those experiences.  Individuals may offer suggestions and advice or just provide a shoulder to lean on.  Support groups exist for a wide selection of health-related issues ranging from living with cancer and diabetes to coping with grief, struggling with substance abuse, and of course, rebuilding one’s life in the aftermath of a brain injury.

 
There are two primary types of support groups that are most relevant to brain injury survivors, namely stroke support groups and brain injury support groups.  Stroke groups tend to be more common than brain injury support groups, though in most larger population areas one will be able to find a brain injury support group in addition to stroke support groups.  Among stroke support groups, there is a small subset that are specific to aneurysms (though survivors of aneurysms and their families are of course welcomed in a general stroke support group).  Support groups are often run out of hospitals, rehabilitation facilities, community centers and houses of worship.  If a group’s meetings take place in a hospital, usually the survivor does not have to be a patient (past or present) of that particular hospital in order to attend.  In addition to the aforementioned support groups, there are support groups designed to address certain specific symptoms of brain injuries.  For example, there are aphasia support groups, apraxia support groups and memory support groups.

 
Each support group tends to have its own individual program and essential dynamic.  Some provide more educational content while others tend to offer more of an emotional/social support program.  Some are survivor oriented, others family oriented and still others are oriented to both survivors and their families.  If you do not feel suitably comfortable at one group, you can always attend another group.  Also, there are available some online support groups necessarily better suited to those who have difficulty leaving their homes.  Some survivors and families will even create their own groups when confronted by a lack of groups tailored to their specific needs in their vicinity.

 
Below are a few links that may aid in finding a support group:

 

For brain injury support groups, click on your state affiliate of the Brain Injury Association of America and scroll to the Support Groups section:

http://www.biausa.org/state-affiliates.htm

Stroke support groups:

http://www.strokeassociation.org/STROKEORG/strokegroup/public/zipFinder.jsp

http://www.stroke.org/stroke-resources/stroke-support-groups

In addition, the American Stroke Association has a family support phone program called the Stroke Family Warmline.  The Warmline phone number is 1-888-478-7653.

Aneurysm support groups:

http://www.bafound.org/support

Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org