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Preparing for the Transition to Home

Preparing for the Transition to Home

Tracy
Hi everybody. It’s… It’s good to see you all here. I hope you had a good week. I hope things are progressing, things going all right.

Travis
Excuse me a minute, Tracy. Can I say something?

Tracy
Sure.

Travis
I know that my Mom probably told you guys everything that happened last week. I just don’t have an excuse for it. I mean… I guess I just felt overwhelmed, and I thought that partying with my friends would help it. It just didn’t. And I owe an apology to all of you.

Tracy
Was there something specific that happened?

Travis
No. It was just the situation, I guess. I mean…with my dad being in the hos… with my dad being in the hospital and me trying to be the “man of the family” I’m just not doing that good of a job at it.

Michelle
Oh honey, you’re wonderful. You’re a big support, and I don’t know what I would do without you. But you’re also still a kid, and I have to remember that and stop laying so much on you.

Travis
Mom, I asked to be involved in this. I mean really, I insisted on it, I guess I just didn’t know what it would be like.

Tracy
So, Travis, are you doing better now?

Travis
Much better. I mean I’m getting my act together, and my Dad’s doing a lot better, too. I mean he had surgery to fix his skull, and it’s amazing how much it helped. He’s talking more, and he doesn’t have as many headaches.

Michelle
Tom’s cranioplasty went really well, and it’s made a big difference. Like Travis said, he’s talking more, he’s smiling at appropriate times, he’s eating on his own… We’re feeling pretty positive for the first time in a long time.

Tracy
Congratulations!  That’s great.

Michelle
Thank you. You know, I think some of the hardest things about caregiving are the constant ups and downs. One minute everything seems so bleak, and the next minute there are these incredible highs. It feels so good to have hope, but I have to remind myself that there will be another challenge right around the corner.

Travis
Mom, let’s just enjoy this moment.

Carl
Well said, Travis. There’s going to be many highs and lows in the coming months, and maybe years. Julie and I have learned to appreciate when things are going well.

Megan
Yeah and I actually found a church near the hospital, and that’s exactly what the Pastor told me. So I’ve spent this week really focusing on the little things that tell me Clay’s progressing, and that really helps. And yesterday when I got back to his room after meeting with his team, he actually waved at me. And of course, it was just lifting his fingers a few inches, but it was really awesome.

Tracy
Oh, I am so proud of you of all, and I am thrilled with… with Clayton’s improvement and Tom doing so well. Remember, recovery can be a series of small steps, but each step is so important. And, of course, there will be big steps too, like Clayton waking up. And of course, Michelle and Travis will be helping Tom take that big step in the next few weeks when he comes home.

Michelle
We’re so happy, and so is Tom. But, truthfully, I’m a bit nervous. There’s so much to do to get ready.

Tracy
Well that’s what we’re going to cover today. You know, the transition to home can be both exciting and really stressful. One thing you want to remember is that you don’t have to do it all by yourself. Ask others… Asking others for help is not a sign of weakness. Of course, there will be some people who want to help you along the way without even being asked.

Now as Tom makes the transition home or, in some other cases, to another facility, your POC, your case manager, and your VA or your military liaison, they’ll all be there to help. Now you need to discuss the transition home with your health care team and work with them to make a plan based on your family member’s needs.

If you can, try a trial weekend at home. That will help you decide how much help you’re going to need, any modifications to the home that might be necessary, and just what to expect in general.

Carl
Sam was home for a weekend a few weeks before he came home. We realized then that we had a lot to learn, and a lot to do to get ready for a more permanent transition. I’m glad that we got a head start when we did,

Tracy
Was Sam’s health care team helpful in the planning?

Julie
Oh gosh, absolutely. We couldn’t have done it without them. They helped us find all kinds of resources that Sam qualified for, and really just helped us every step of the way.

Tracy
Well let’s talk about some of those steps. Like Carl and Julie, it’s really important to be prepared before your family member comes home. Give yourself plenty of time to get that done. Like Carl said, you know it doesn’t just happen overnight.

One of the first things you’ll need to do is talk to your health care team about the home safety evaluation. Your home may need to be altered just to make it safer. You want to make it as suitable as possible for your loved one’s needs. Home modifications can be relatively minor and inexpensive... things like oh installing grab bars, handrails, lever handles on the doors.

And in other cases, those modifications could be a little bit more major, more expensive. Things like installing elevators or lifts, or modifying kitchens for easier meal preparation, installing emergency communication systems if that’s necessary. There is a program, called the Specially Adapted Housing Grant, that’s available through the VA, they can help cover the cost of modifications.

And be sure not to rush into those major modifications because your loved one’s needs may change over time. You can plan other modifications as his rehabilitation continues. 

Now as you get ready to bring your family member home, you’ll also need to plan for any special equipment that might be required. So be sure and make a list of the assistive devices that your family member is using in the hospital now, and ask the case manager or the discharge planner to make sure that you’ll have that same equipment. Okay. Now having equipment prescriptions written in advance, so that those devices will be there when your loved one gets home that’s important. Without the prescription, the cost of those devices might not be covered by the military, the VA, or your insurance company.

Megan
So what kind of equipment… of…assistive devices might we need?

Tracy
Well, Megan, assistive devices can be anything from simple to complex equipment, anything that helps that person with TBI be more independent. Some of the more simple things could be a magnifying glass, or a timer to remind the person when to take their medications. And they make a special grip that you can put on to your fork or your pen that helps with writing and eating. It’s really cool. More complex devices might include a personal digital assistant, or a PDA, a hand-held GPS helps them find their way around, or special telephones that help people with speech and hearing problems communicate. In some cases your family member with TBI might need a cane, or a walker, crutches, a special bed might be necessary. Your health care team will help you decide just exactly what your loved one will need, and where to locate the items.

Julie
One thing we learned with Sam’s devices was to keep the phone number for the medical equipment company right by the phone just in case we had any problems. Carl got to know the people from the company, so we always knew who to talk to.

Tracy
That’s a really good suggestion, Julie.

Glossary

A-D   E-H   I-L   M-P   Q-Z

Absence Seizures – A non-convulsive generalized seizure when a person may appear to be staring into space with or without jerking or twitching movements of the eye muscles. These seizures may last for seconds, or even tens of seconds, with full recovery of consciousness and no confusion. People experiencing absence seizures sometimes move from one location to another without any purpose.

Abstract Thinking – Being able to apply abstract concepts to new situations and surroundings.

Acceleration – To increase speed and/or change velocity.

Alopecia – A condition of a loss of hair or baldness.

Amnesia – A loss of memory. Amnesia can be caused by brain injury, shock, fatigue, repression, illness and sometimes anesthesia.

Angiogram – A procedure in which a dye is injected through a thin tube into a blood vessel. Special x-ray pictures are taken, allowing your health care provider to view the blood vessels of the brain, heart or other part of the body. Also called an arteriogram for arteries or venogram for veins.

Anorexia – A loss of appetite, especially when prolonged over time.

Anosmia – The decrease or loss of the sense of smell.

Anoxia – Absence of oxygen supply to an organ.

Anoxic Brain Injury – Injury to the brain due to severe lack of oxygen. This usually happens when blood is unable to flow to the brain due to certain injuries,bleeding, or cardiac arrest.

Apraxia – The loss or impairment of the ability to perform complex coordinated movements despite having the desire and the physical ability to perform the movements.

Arthralgia – Joint pain or stiffness in a joint.

Ataxia – The inability to coordinate the movement of muscles. Ataxia may affect the fingers, hands, arms, legs, body, speech, or eye movements.

Axons – Also known as nerve fibers, an axon is a long, slender projection of a nerve cell, or neuron, that conducts electrical impulses away from the neuron's cell body or soma. Axons are the primary transmission lines of the nervous system.

Basal Ganglia – The deep brain structures that help start and control voluntary movements and postures.

Bipolar Disorder – Also known as manic-depressive illness, bipolar disorder is a brain disorder that causes unusual shifts in a person’s mood, energy, and ability to function.

Blast Injuries – Injuries that result from the complex pressure wave generated by an explosion. The explosion causes an instantaneous rise in pressure over atmospheric pressure that creates a blast over pressurization wave. Injuries to organs surrounded by fluid, such as the brain and air filled organs such as the ear, lung and gastrointestinal tract are common.

Brain – The main organ of the central nervous system (CNS). It is divided into the cerebrum, brainstem, and cerebellum. The brain regulates virtually all human activity.

Brain Stem – The lower extension of the brain where it connects to the spinal cord. Neurological functions located in the brainstem include those necessary for survival (breathing, heart rate) and for arousal (being awake and alert).

Cerebellum – The portion of the brain (located in the back) that helps coordinate movement.

Cerebral Hypoxia – The inadequate oxygen supply to brain tissue. Mild or moderate cerebral hypoxia is sometimes known as diffuse cerebral hypoxia. It can cause confusion and fainting, but its effects are usually reversible.

Cerebral Spinal Fluid – A colorless fluid that is found around and inside the brain and spinal cord, offering some protection and cushioning the brain.

Cerebrum – The largest part of the brain. It is divided into two hemispheres, or halves. It controls motor, sensory, and higher mental functions, such as thought, reason, emotion, and memory.

Chronic Subdural Hematoma – An "old" collection of blood and blood breakdown products between the surface of the brain and its outermost covering (the dura).

Closed Head Injury – Injury to structures within the skull or the brain that do not result in an opening in the, such as a direct blow to the head or a blast. Injuries may range from a mild concussion to potentially fatal.

Coma – A state of unconsciousness from which the person is not aware of the environment nor able to perform voluntary actions.

Computerized Axial Tomography, or CT or CAT Scan – A painless procedure in which x-rays are passed through the affected area at different angles, detected by a scanner, and analyzed by a computer. CT scan images show bones and blood collections more clearly than conventional x-rays. The computer can combine individual images to produce a three-dimensional view.

Concussion – A blow, jarring, shaking or other non-penetrating injury to the brain which causes a temporary decrease in normal brain activity.

Consciousness – The state of awareness of the self and the environment.

Contusion – A bruise. In terms of brain injury, a contusion refers to bruising of the brain tissues.

Coup-Contrecoup – An injury to the brain that occurs when an impact or violent motion brings the head to a sudden stop, causing injury to the impact site and the opposite side of the brain. This is also known as an acceleration / deceleration injury.

Cranium – Skull.

Deceleration – To reduce speed or go more slowly.

Diffuse – Widely spread.

Diffuse Axonal Injury, or DAI – Widespread injury of large nerve fibers (axons covered with myelin).

Diffuse Brain Injury – Injury to cells in many areas of the brain rather than in one specific location.

Diplopia – Seeing two images of a single object; double vision.

Dura Mater – The outermost of three membranes protecting the brain and spinal cord. It is tough and leather like.

Dysarthria – Difficulty in forming words or speaking them because of weakness of the muscles used in speaking. Tongue movements are usually labored and the rate of speaking may be very slow. Voice quality may be abnormal, usually excessively nasal; volume may be weak; drooling may occur.

Dyskinesia – Involuntary movements most often seen in the arms or legs.

Electroencephalograph, or EEG – A test that measures electrical activity of the brain that is recorded from electrodes placed on the scalp.

Epidural Hematoma – Bleeding into the area between the skull and the dura mater.

Euphoria – An exaggerated or abnormal sense of well-being not based on reality.

Executive Functions – The ability to formulate and carry out plans effectively. These functions are essential for independent, creative and socially constructive behavior.

Expressive Aphasia – also known as Broca’s aphasia. A difficulty in expressing oneself in speech and writing. Characterized by knowing what one wants to say but being unable to find the words to say what is being thought. There is lack of spontaneous speech, words are often labored over and sentences are short and incomplete.

Focal Brain Injury – Damage confined to a small area of the brain. The focal damage is most often at the point where the head hits an object or where an object, such as a bullet, enters the brain.

Frontal Lobe – The front part of the brain; involved in planning, organizing, problem solving, selective attention, personality and a variety of "higher cognitive functions."

Generalized Tonic-Clonic Seizures – A seizure involving the entire body. It is also called a grand mal seizure. Such seizures usually involve muscle rigidity, violent muscle contractions, and loss of consciousness.

Glasgow Coma Scale – A scale used for measuring level of consciousness. Scoring is determined by three factors: eye opening ability, verbal responsiveness, and motor responsiveness. The scores range from lowest level of responsiveness a 3 to highest level of responsiveness a 15.

Hematoma – A collection of blood caused by the rupture or tearing of blood vessels.

Herniation/Herniated –Compression of brain tissue caused by high pressure inside the skull that can lead to death if not aggressively treated.

Hypertension – The medical term for high blood pressure.

Hypotension – The medical term for low blood pressure.

Hypoxia – Decreased oxygen levels in an organ, such as the brain.

Intracranial Pressure (ICP) Monitor – A monitoring device used to determine the pressure within the brain. It is used to assess potential complications resulting from increased pressure exerted on the brain.

Impaired Initiation – The diminished ability to take the first step in beginning an action.

Improvised Explosive Devices, or IEDs – An IED can be almost anything with any type of material and initiator. It is a “homemade” device that is designed to cause death or injury by using explosives alone or in combination with toxic chemicals, biological toxins, or radiological material. IEDs can be produced in varying sizes, functioning methods, containers, and delivery methods. IEDs can utilize commercial or military explosives, homemade explosives, or military ordinance and ordinance components.

Intracerebral Hematoma – Collection of blood inside the brain tissue.

Intracerebral Hemorrhage – A subtype of intracranial hemorrhage that occurs within the brain tissue itself. Intracerebral hemorrhage can be caused by brain trauma, or it can occur spontaneously in hemorrhagic stroke.

Intracranial Pressure, or ICP – The amount of pressure inside the skull resulting from the brain tissue, cerebrospinal fluid and blood volume. This pressure normally ranges from 0-10 mm Hg.

Limbic System – A group of structures deep within the brain that are associated with emotion and motivation.

Lobe – A part of the brain located in each of the two hemispheres. Each hemisphere of the cerebrum is divided into four sections known as the frontal lobe, the parietal lobe, the occipital lobe, and the temporal lobe.

Magnetic Resonance Imaging, or MRI – A test that uses a powerful magnet linked to a computer to make detailed pictures of soft tissues inside the body.

Meninges –The covering of the brain that consists of three layers: the dura mater, the arachnoid mater, and the pia mater. The primary function of the meninges and of the cerebrospinal fluid is to protect the central nervous system.

Mild Traumatic Brain Injury, or mTBI – Also referred to as a concussion, mTBI involves a disruption of brain function caused by trauma. This disruption is characterized by, but not limited to, a loss of consciousness for less than thirty minutes, and posttraumatic amnesia lasting for less than 24 hours, and a Glasgow coma Scale of 13 – 15.

Military Acute Concussion Evaluation, or MACE – A standardized mental status exam that is used to evaluate concussion in theater. This screening tool was developed to evaluate a person with a suspected concussion.

Myalgia – Pain in one or more muscles.

Neurocognitive – Of, relating to, or involving the brain and the ability to think, remember or process thoughts.

Neurons – A nerve cell that can receive and send information by way of connections with other nerve cells.

Neuropsychology – A science that combines the study of the brain’s structures and functions with psychological processes and human behaviors.

Neuroradiological Tests – Tests using computer-assisted brain scans. These tests allow providers to visualize the brain. Tests may include: CT Scan, MRI, Angiogram, EEG, SPECT Scan, PET Scan, DTI Scan.

Neurotransmitters – Chemicals found within the brain that are released from a neuron which transmit signals from neuron to neuron across gaps called synapses. These chemicals either excite or inhibit specific reactions, such as in motor neurons, the neurotransmitter causes contraction of muscles through stimulation of muscle fibers.

Nystagmus – Involuntary, usually rapid movement of the eyeballs (side to side or up and down).

Occipital Lobe – The occipital lobes are found at the back of the brain. These lobes receive signals from the eyes, process those signals, allow people to understand what they are seeing, and influence how people process colors and shapes.

Ocular – Relating to the eye.

Open Head Injury – Trauma to the brain that occurs from a skull fracture or penetrating injury.

Parietal Lobe – The part of the brain that is involved with movement, and with the processing of signals received from other areas of the brain such as vision, hearing, motor, sensory and memory.

Penetrating Head Injury – A brain injury in which an object pierces the skull and enters the brain tissue.

Perseveration – The repeated and uncontrollable use of the same words or actions regardless of the situation.

Photophobia – An intolerance to light; or a painful sensitivity to strong light.

Positron Emission Tomography, or PET Scan – a specialized imaging technique that uses an injection of a short-lived radioactive substance and special CT scans. PET scanning provides information about the body's chemistry not available through other procedures. Unlike other imaging techniques that look at structures of the brain, PET looks at the energy use of different parts of the brain.

Post Deployment Health Assessment, or PDHA – The military’s global health screening that occurs when a unit or service member returns from an overseas deployment. The purpose of this screening is to review each service member's current health, mental health or psychosocial issues commonly associated with deployments, special medications taken during the deployment, possible deployment-related occupational/environmental exposures, and to discuss deployment-related health concerns.

Post Deployment Health Reassessment, or PDHRA – A second assessment used 3-6 months following redeployment or return of service members from overseas deployment. PDHRA extends the continuum of care for deployment related heath concerns and provides education, screening, assessment and access to care.

Post Traumatic Stress Disorder, or PTSD – A condition where memories of traumatic events are re-lived after the fact.

Post-traumatic Amnesia, or PTA – The inability to remember things following a traumatic event. Memory loss caused by brain damage or severe emotional injury.

Rancho Los Amigos Scale of Cognitive Functioning – A scale used to follow the recovery of the TBI survivor and to determine when he or she is ready to begin a structured rehabilitation program.

Receptive Aphasia – Also known as Wernicke’s aphasia characterized by difficulty understanding spoken words. The aphasic individual themselves have difficulty interpreting and categorizing sounds and speak in what is referred to as a “word salad” with random words put together unintelligibly to form sentences.

Seizure – Uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, thought disturbances, or a combination of symptoms. Seizures fall into two main groups. Focal seizures, also called partial seizures, happen in just one part of the brain. Generalized seizures are a result of abnormal activity throughout the brain.

Seizures – A sudden or severe change in behavior due to excessive electrical activity in the brain. Many types of seizures cause loss of consciousness with twitching or shaking of the body. Occasionally, seizures can cause temporary abnormal sensations or visual disturbances.

Shaken Baby Syndrome – A severe form of head injury that occurs when an infant or small child is shaken forcibly enough to cause the brain to bounce against the skull, causing brain injury.

Single-photon Emission Computed Tomography, or SPECT Scan – Test that uses the injection of a weak radioactive substance into a vein, followed by pictures taken with special cameras. This test is similar to a PET scan and provides information on the energy being used by the brain.

Skull Fracture – A break, split or crack in the skull.

Subdural Hematoma – Bleeding confined to the area between the outer-most covering of the brain (dura) and the brain.

Temporal Lobes – Temporal lobes are located at about ear level, and are the main memory center of the brain, contributing to both long-term and short-term memories. The temporal lobe is also involved with understanding what is heard, and with the ability to speak. An area on the right side is involved in visual memory and helps people recognize objects and faces. An area on the left side is involved in verbal memory and helps people remember and understand language. The back area of the temporal lobes helps people interpret the emotions and reactions of others.

Thalamus – A part of the brain that is primarily responsible for relaying sensory information from other parts of the brain to the cerebral cortex.

Tinnitus – “Ringing in the ears" or another noise that seems to originate in the ears or head.

Traumatic Brain Injury, or TBI – An injury to the brain as the result of trauma to the head.

Whiplash – An injury to the neck caused when the head is violently thrown back and forth such as in a rear end car collision.

Related Information:
Before the Transition
Assistive Devices
Medication Log
Glossary
Frequently Asked Questions
"It had been 15 months and he had slowly improved. But he couldn’t talk. He’d kind of start trying to mouth words, but he just couldn’t talk. And so, on October 21st, 2005, I’ll never forget that morning. I came in to the bedroom and I said, Fred, how are you doing?’ And he said, ‘Fine.’ Okay. I think he just talked to me. So I just turned around and went back into the kitchen, got his breakfast, came back in and thought, okay, let me try this again. I said, ‘Fred, how are you doing?’ And he said, ‘Fine.’ It wasn’t a lot at first, but he could talk." -  Denise G.

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