Dixie Coskie is the mother of a child who lived through both a traumatic brain injury and cancer. In this chapter from her book, Unthinkable! A Caregiver’s Companion, Dixie shares her experience helping her son while in the rehabilitation hospital.
Getting Ready for the Transition to the Rehabilitation Hospital
- The ICU’s job is to stabilize the patient. Understand that when your child is stable, you will need to investigate the option of taking him or her to a rehabilitation hospital.
- Have another family member at the ICU to advocate for your child while you’re investigating potential rehabilitation hospitals.
- Talk to a social worker about the transition ahead.
- Find out what do rehabilitation hospitals actually do. Rehabilitation is to assist your child in regaining or gaining maximal independence. Rehabilitation helps the survivor to relearn old skills, acquire new skills, and develop skills that have been lost or that will not develop.
- Know that rehabilitation requires a comprehensive team approach. The family’s involvement is crucial.
- Depending on the severity and location of your child’s brain injury, recognize that the outcome of therapy may differ.
- Learn some basic brain physiology. Neurons are cells in the brain that send messages to other parts of the brain and body. Damage to these neurons can be temporary, and they may recover on their own. Damage can also be permanent, which could result in the loss of certain abilities. In some cases, other neurons make new connections and take over the job of the damaged neurons.
Visiting a Potential Rehabilitation Hospital
- Understand the duration of your stay at the rehabilitation hospital is likely to be unsure. Your child could be there 3 weeks, 3 months, or 3 years.
- Take into account the distance from your home to the rehab hospital, as well as parking and traffic issues. For example, will you have to pay for parking?
- Realize the doctors and nurses you are currently working with in the ICU will no longer follow your case or have any input.
- Recognize that facilities differ; not all can manage someone on a ventilator or with a tracheotomy, or care for an individual with behavioral issues. Some facilities have different types of care for someone who is in a coma or catatonic versus someone who is more independent.
- Tour different facilities and watch therapies in action.
- Ask to speak to former patients and/or their caregivers about their experience at the facility.
- When visiting the facility, bring your spouse/partner or another family member or friend with you.
- Take notes or bring a tape recorder. Be prepared with questions.
First Impressions Are Often Right
- Pay attention to how you feel when you first walk in.
- Note if the people appear friendly and professional.
- Are you seen in a reasonable amount of time?
- Do the premises appear to be well maintained, clean, safe, etc?
- Were all your questions answered?
- Was the staff compassionate?
- What will be the source of funding?
- How is this facility accredited?
- Is there a waiting list?
- Is there a head doctor on the floor at all times?
- What is the nurse-to-patient ratio?
- What is the turnover of staff?
- Is there bilingual staff?
- How often will my child receive services? How long are the sessions?
- What is your success rate for patients with traumatic brain injuries?
- Can I speak to other patients who have been here?
- What therapies are offered?
- Do you have a special brace clinic or orthopedics department?
- Do you have a therapeutic aquatics department?
- What about assistive technology?
- Do you provide tutors for school work?
- Do you have counselors or social workers? Do you provide family therapy?
- Can my other children visit? What is the involvement of family?
- Can I sleep in the room and be with my child twenty-four hours a day?
- Is there a chapel, cafeteria, separate bathrooms, or sleeping areas for parents?
- What are my rights?
- Do you help with the transition home?
Making the Transition
- It’s okay to feel apprehensive as you leave the ICU.
- Communicate feelings with your spouse/partner; try to comfort each other.
- Be prepared that the atmosphere in the rehabilitation hospital will be more subdued than in the ICU.
- Find out where the resource room or library is and where you can get Internet access to learn more about traumatic brain injury.
- Be prepared to see very disabled children, wheelchairs, walkers, etc.
- Understand medical terminology such as catatonic, vegetative state, etc.
- Know that your child may need to share a room with another patient; ask for a patient in the same age range and sex of your child.
- Have one parent stay in the hospital, while the other is at home with the other children.
- Set a time of day when you can connect with your spouse/partner by phone or e-mail.
- Bring in items from home: I-pod, radio, clothes, posters, pictures, diary, pillows, etc.
- Call home to talk to your other children; answer their questions as best you can according to their age level of understanding.
- Rest when you can.
- Get ready to fight the fight of your life.
- Write down the names of all therapies and the names of all therapists, nurses, and doctors.
- Know the names of the medications your child is now on and when they need to be administered. Advocate for your child when the nurses are late in administering drugs or changing the bed or undergarments.
- Ask where the cafeteria is. Are coupons provided for parking or meals?
- Talk to a financial advisor at the hospital and find out about resources they provide.
- Talk with a social worker about getting a case worker involved from your insurance company.
- Stay with your child or have another adult at the rehab hospital twenty-four hours a day.
- You may begin to realize that there might be long-term effects from the injury and begin to feel intense fear and anxiety.
- You may face the loss of what might have been.
Returning to Work
Make a realistic plan with your employer as to when to come back to work, possibly working part-time or from the hospital or home. For some, returning to work is a welcome change. It can create a break from what has been an ever-present grief. The office may be the only part of life that seems normal and routine. But for many who have experienced a recent loss or a traumatic experience, returning to work can be difficult. You may be dreading the thought of returning to work for several reasons:
- Not being at the hospital to help your injured child, or at home to help your spouse/partner and other children.
- Seeing coworkers for the first time exposes you to “I’m so sorry” comments, which continually reminds you of your situation. A gentle “thank you” is all the response that is necessary. You do not need to give any more information you do not wish to share.
- You may have a high-pressure job with many deadlines and little room for mistakes. You have probably noticed that it is difficult to concentrate and retain information in your grief. You may be easily distracted, and errors can occur. It is useful to check everything twice, or to ask a coworker or supervisor to review what you have done. If you choose, share with your coworkers or supervisors how difficult things seem at this time and when you need their help or space.
- You may worry about breaking down in front of colleagues or in the middle of an important meeting. This can happen, but save yourself embarrassment by briefly letting people know what has occurred in your life. If you need to excuse yourself, do so. Take as much time off as allowed and then some to regain control and some sort of stability…take small steps…it is “one day at a time.”
There is No Right or Wrong Way to Grieve
- Grief often comes in waves.
- Denial: “This can’t be happening to me.”
- Anger: “Why is this happening? Who is to blame?”
- Bargaining: “Make this not happen, and I in turn will ______.”
- Depression: “I am too sad to do anything, physically, emotionally, mentally, spiritually.”
- Acceptance: “I am at peace with what has happened and is going to happen.”