Ideas for Dealing with Cognitive Issues

Since I wrote A New Routine, I’ve been thinking about some of the strategies our family  and therapists used in dealing with cognitive issues.

From the beginning:

  1. Caregiver-handsUse normal tone of voice, staying calm and reassuring.
  2. Talk to the person as if they understand everything you’re saying. Never discuss subjects that may be upsetting in front of the person.
  3. Keep comments and questions short and simple.
  4. Let them know what you’re going to do before you do it.
  5. Allow the person extra time to respond.
  6. It’s okay if responses are inconsistent or don’t occur.
  7. Have only one person speak at a time.
  8. Tell the person who you are if you’re not sure they know.
  9. Remind the person of the day, date, name and location of where they are.

To stimulate memory:

  1. If they’re in the hospital, bring favorite belongings, pictures of family members and friends.
  2. Play their favorite music.
  3. Read familiar books and magazines to them.
  4. Watch their favorite TV shows or movies.
  5. Talk to them about family, friends and activities they previously enjoyed.
  6. Keep a notebook nearby for family and friends to sign so the person can read and remember who visited. If they can’t read, you can use it to remind them of who had been there.
  7. Write down improvements so they can read it or you can remind them of the changes.
  8. Don’t assume the person will remember what you tell them. Frequent repetition is often required.

To stimulate senses:

  1. Gently massage lotion on their arms, hands, legs, feet, face, back and stomach. It also helps prevent skin breakdown.
  2. Use a variety of soaps and lotions to stimulate smell. Talk about what they smell like.

If the person is agitated:

  1. Make sure they are getting the rest they need.
  2. Keep the room calm and quiet.
  3. Limit the number of visitors to two or three at a time.
  4. Allow them to move as much as safely possible.
  5. Moving them to a different location might help.
  6. Take them for a ride if permitted.
  7. Don’t force the person into activities.
  8. Listen to them and follow their lead if safely possible.
  9. Don’t laugh at, play into or reward inappropriate behavior.
  10. If reasoning is not successful, try redirection and distraction to stop inappropriate behavior.

If conversation is confused, unusual, insistent or bizarre:

  1. Tell them where they are and reassure them they are safe.
  2. Help the person get organized for tasks and activities.
  3. Provide a rest time.
  4. Be careful with humor, teasing, or using slang. Sometimes it works and other times it’s misunderstood.

Other useful hints:

  1. Expect the person to be unaware of their deficits and the need for increased supervision and/or rehabilitation.
  2. They may insist nothing is wrong with them and that they can resume their usual activities.
  3. Realize that redirection is not always effective and arguments can be frequent and prolonged.
  4. Encourage the person to participate in activities. Help with starting and continuing.
  5. Treat the person with respect while providing guidance and assistance in decision making.
  6. Talk through problems about the person’s thinking skills, problem solving or memory challenges without criticizing.
  7. Encourage the person to improve cognitive skills with games and/or therapy.
  8. Check with the physician regarding any restrictions such as driving, sports or drinking. Let them be the bad guy.
  9. Encourage the person to use note taking and recorders to help with memory deficits.
  10. Discuss situations where the person may have had difficulty controlling emotions.
  11. Talk with the person about yours and their feelings and offer outside support such as counseling and/or support groups.
  12. Make sure you have the help, support and respite care you need.

Resource: http://www.jhsmh.org

What ideas can you add to this list? Please share what has or hasn’t worked for you.

 

 

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A New Routine

Wouldn’t it be nice if we had a crystal ball and could see into the future? It would make decisions and choices so much easier if we knew ahead of time what the outcome would be. The feeding tube was an answer to prayers for Mark’s improved health. If I would have known the difference it would make, I wouldn’t have given the feeding tube a second thought. With better means of nutrients came more frequent and longer episodes of consciousness and alertness. I continued to play Mark’s favorite music along with cassette tapes with voice messages from his mother and sisters from out of state. I read and talked to him, assuming he understood everything I said. He continued to have speech, occupational and physical therapy every day. While Mark was becoming more aware of his surroundings, I was learning how to talk and encourage him. We were growing together in new and unfamiliar territory.

Mark with Christopher and Katie 1991 Just a few days after waking from his coma.

Mark with Christopher and Katie 1991
Just a few days after waking from his coma.

Christopher and Katie were developing in this different world also. They went with me nearly every evening to visit their dad and reassured him of their love through hugs and kisses. Mark was unable to hug and kiss them back, but that didn’t seem to discourage them. One evening after we left, Mark told the nurse he needed to work hard because he had two kids that needed him. They inspired him to exertion.

Three weeks after the feeding tube was placed, Mark passed his swallow test. He was able to eat yogurt, Jell-O and pudding, which made eating dinner with him more interesting. The kids cheered him on as he learned to chew and swallow as I fed him the food. After our meal, we’d push Mark in the wheelchair to go outside to enjoy the nice summer evening air and we watched the kids play on the green lawn. Often I would question Mark about the colors around us in the sky, ground or of the ball the kids were playing with. Usually he got the color right. One night near the end of July I started singing with the kids some of our traditional campfire songs only without the campfire. To our pleasant surprise Mark joined in. He didn’t sing every word, but I knew he was following along in his head because every few words he’d say with us.

On the wall near the clock was a paper with the month and year on it. Another paper told the date. To help keep him oriented, the nurses and therapists asked him often about the date, time and year. If he couldn’t recall, he soon learned where to look to find out and hallelujah, he remembered how to read! Also on the wall was a lined piece of paper for the visitors to write their names and the date of their visit. Some would write a brief note of encouragement or an improvement they noticed. The therapists and I would use the information to remind Mark of what went on during that day or the night before.  Every day his alertness grew and we were encouraged.

Since we were so close to home, Mark received visitors nearly every day. Family and friends were a great source of support and comfort. Mark’s mother and sister, Jerrie, flew in from Washington State for a few days. Jerrie brought her wedding photo album from eight months before. Mark could name family and friends in the photo album.  What a relief to see he remember every person who came for a visit. Sometimes he’d get confused, but usually it was just his short-term memory he struggled with. His responses were delayed, with only a few short words, but we were thrilled to be able to converse with him.

On Sunday’s I’d take the kids to church and after Sacrament Meeting, while the kids were in Primary, I’d drive to Western Rehab to take Mark to the Sacrament Meeting there, then drive back to church to pick up the kids from Primary. On Sunday, August 4, 1991, I wrote in my journal, “Pay day – Mark said, ‘I appreciate you and all you do for me and the kids.’” He not only comprehended, but was grateful for my efforts.

A few days later when my brother Steve was visiting, Mark said, “I want to talk about your sister.”

Steve asked, “Which one?”

“The one I take care of, Barbara.”

“What about her?”

“She works hard and is always busy.”

This was particularly meaningful because Steve was also one of my employers. It appeared not only did Mark recognize family and friends, but remembered their connections. He was aware of my busyness. Every simple realization and improvement was a step in the right direction.

There was a large sitting room at Western Rehab where family and friends could gather to visit. In the corner of this room was a piano. My oldest brother, Mick, along with his family, would often come to visit on Sunday evenings and he would play the piano. Other patients gathered there with us to enjoy his playing and the encouragement his music brought. Once his talent was known, patients or staff would asked him to play whenever he came to visit. The entertainment was always a welcomed distraction from the pain and hard work of rehabilitation and the loneliness of not being home.

My sister, Rosanne, and her family put together a few musical programs to perform for us and any other patients who wanted to come to the sitting room. Usually a good crowd was there to be lifted up by the sounds of my brother-in-law, Klint, at the piano, Rosanne on the cello or flute and their five children, age’s five to fourteen, all on violins.  Everyone in attendance enjoyed the entertainment and the healing power of music.

I am grateful for our family and friends who turned what could have been the dark days of rehabilitation into sunshine. However, there is no place like home and as the summer was coming to an end, I longed to bring Mark home.

Understanding a Complicated System

Have you ever studied so hard your brain hurts or feels tired? How delicate is our brain? Why does a person with a traumatic brain injury drift in and out of consciousness? I’ve researched some sites on the brain and meshed information together from two of my favorite sources, which are listed at the end of my article.

Our brains weigh about 3.4 pounds of extremely delicate soft tissue, being the consistency of jelly or soft butter. So delicate it can’t even support its own weight. Fortunately, it’s well protected in the hard bones of our skulls, durable tissue and surrounded in a bath of cerebral spinal fluid. Because the brain is immersed in a liquid, its weight is reduced to a point at which it can support itself. The cerebral spinal fluid provides further protection to the brain by its presence within a series of hollow, interconnected chambers, called ventricles. Aside from contributing to the structural support of the brain, this bath of fluid also provides a water cushion that protects your brain in a collision or if you just bump your head.

The brain has no ability to maintain long term energy reserves; it must be constantly supplied with blood. This occurs through the vertebral arteries and the internal carotid arteries. Within the brain itself, these arteries are interconnected, allowing for a continuous supply of blood to all portions of the brain when one or more arteries become blocked.

Brain scans show that thinking uses up a lot of energy, which is revealed by increased blood flow. It uses as much as a fifth of all the energy we get from food. Since our brains can’t store much energy and because they’re tightly enclosed inside our skulls, there is a limit to how much blood and therefore energy can be supplied to the active areas. Consequently, thinking hard tires your brain.

Image credit: File:Neuron.svg

Image credit: File:Neuron.svg

Specialized cells called neurons perform the information processing that occurs within the brain. This processing occurs as a result of the transmitting and receiving of electrochemical signals by these cells.

Many of our brain’s nerve fibers are wrapped in a fatty sheath, which makes 10% of our brain fat. This fatty sheath, called myelin, is vital as it insulates the nerves. This allows electrical impulses to travel quickly around your brain.

Image credit: Imgarcade.com

Image credit: Imgarcade.com

If you hit your head hard and the skull is broken, the pieces of the broken bone may dig into the brain and tear the delicate tissue. Even if your skull isn’t broken, it’s possible to sustain serious brain damage if the brain impacts onto the inside of the skull or twists against its rough surface. When there is sudden speeding up and slowing down, such as in a car crash or fall, the brain can move around violently inside the skull, resulting in injury causing bruising or bleeding. Bleeding is particularly dangerous, causing further damage. A person with this type of injury may seem fine initially as the effects take several hours to reveal themselves.

The severity of injury refers to the degree or extent of brain tissue damage. The degree of damage is estimated by measuring the duration of unconsciousness, the depth of coma and level of amnesia or memory loss. MRIs or CT scans are also used to project the injury.

Research shows that just like with muscles the more you use a part of your brain, the larger it will get. Also like muscles, as you use a particular part of your brain, more blood is pumped to that area to provide energy. Finally, as with muscles, the more you use your brain, the better it works, subsequently it can improve.

The human brain is a complicated system comprised of over 1 billion specialized cells called neurons. These neurons get damaged in a collision and take time to heal. Amongst these neurons there are countless connections. “To comprehend this fully, one needs not look further than the Amazon rainforest, where there are some 1 billion trees. If one counted every leaf on every tree, the sum would closely parallel the number of connections in the human brain.”-unknown author.

Your brain is constantly monitoring and fine tuning what is going on in your body – 24 hours a day, year after year – without you even being aware of it. What do you do to ensure its health and safety?

Resources:

http://www.brocku.ca/stutter/frpgs/brain.html

http://www.youramazingbrain.org.uk/insidebrain/yourbrain.htm

 

 

Looking for Inspiration

Mark’s pneumonia seemed to be improving, but the fever persisted and the white cell count was too high. Dr. Wright felt changing his feeding tube would improve his condition.

“The nasogastric (NG) tube is not meant for long term and can be a source of infection. Since we don’t know how long it will take for Mark to be capable of chewing and swallowing, I recommend it be replaced with a gastrostomy tube which allows feeding directly into the stomach,” Dr. Wright said.

“It would be his third surgery in nearly three months. I would hate for him to go through it, especially when he’s showing signs of improvement.”

“The percutaneous endoscopic gastrostomy (PEG) procedure is relatively common under these circumstances. It’s a simple surgery, which only takes 30-45 minutes,” the doctor said.

I despised making decisions for Mark. The responsibility was a heavy load that I was unprepared to carry. What would he want? I tried to connect with his spirit. Tell me Mark, what do you want me to say? Do you need the feeding tube? Should I agree to it? I knew I had to be his voice, but I wanted him to give me the answers. I felt and heard nothing.

“I believe the PEG will improve Mark’s condition and lower the frequency of aspiration. He’ll tolerate it better,” the doctor encouraged.

“Okay,” I agreed reluctantly.

Within a few days, Dr. Wright arranged for the surgery at a nearby hospital and ordered a specialized van which could transport Mark in a reclined wheelchair. I rode in the van with Mark. He was unconscious and seemingly unaware of the drive on this beautiful, hot summer day in July. When we arrived at Cottonwood Hospital, two male aides lifted Mark’s stiff body onto a stretcher and wheeled him into an operating waiting room. I meet the surgeon for the first time just minutes before the surgery was scheduled. With a nurse at his side, the doctor explained to me the procedure details. The nurse handed me a thin, wooden clipboard with forms for me to sign, not only giving approval for the surgery, but declaring my understanding of the risks involved. The complications listed included: aspiration, oversedation, wound infection and/or bleeding. These complications I could comprehend, but an injury to the liver, bowel or spleen took me by surprise. When I read hemorrhaging and perforation, or unwanted hole in the bowel wall, which could be fatal, a big red flag shot up in my mind.

Risks—wait a minute. I was only told about how common and simple this procedure was. Now I’m reading about all the unfortunate possibilities and just minutes before the surgery was scheduled. I felt trapped and wasn’t convinced Mark needed the PEG in the first place. I believed with every fiber of my being that life would get back on the normal track—the one we were familiar with.  I couldn’t imagine any other way of life, but these foreign road blocks kept getting in our way.

I looked at Mark, who was unaware of my turmoil. I resented being in this position. I was hoping and praying for inspiration to know what his desires were, but I felt nothing.

“I can’t sign these forms,” I said to the surgeon, handing back the clipboard and forms to the nurse. “I wasn’t made aware of these complications.”

“Oh, the chances of any of them happening are one in a thousand,” he said in a reassuring voice.

“Before our car accident, I could think Mark would never be that ‘one in a thousand’. The statistics mean nothing to me now. How many car accidents happen and result in a traumatic brain injury, causing a coma for three months? If you happen to be that ‘one in a thousand’, that’s all that counts.”

“He’s had the NG tube twice as long as recommended. They are not meant to be used more than six weeks. Dr. Wright has recommended this procedure in order to maintain adequate nutrition for Mark.”

“I understand, but I just don’t know how much longer he will need any feeding tube and I wasn’t told about the risks until now. I need a few minutes to process this information. I don’t want to sign the consent forms under pressure. I need to think about it, I’ll be back soon,” I said as I walked out of the room, leaving the nurse and surgeon with Mark.

I hurried down the hall wanting to vanish from this situation, but not knowing where to go. I can’t believe I just walked out. I don’t want to make one more decision about Mark’s healthcare, but I’m expected to. I wasn’t getting an answer from Mark on what I should do, so I knew my best option was to find a secluded place to pray. I spotted a women’s bathroom, went inside and locked the stall door. Lord, I’m under pressure to sign for this procedure. I believe you know all from the beginning to the end. Please tell me—should I sign for Mark to have the surgery? Does he really need it?

Feeling awkward and anxious about this strange place for such an important prayer and my desperate need for inspiration, I was quickly overcome with a calming sensation. Yes, he needs the surgery. Fear not, everything will be alright., I am with thee.

Thank you for your insight and reassurance.

I walked back to the room with confidence in my decision and the surgeon and nurse were relieved when I told them I was ready to sign the forms. The nurse handed me the clipboard and after my signatures, they rushed off to the operating room.

Ninety minutes later the surgeon finally came to the waiting room where I was told to wait. “The surgery was a success. The reason it took longer than usual was because of Mark’s strong stomach muscles.”

“He’ll be proud to hear that,” I said with a smile. “Mark did a hundred sit-ups nightly to stay fit and trim. He never wanted a pot belly.”

“Well, he definitely doesn’t have one. It’s more like abs of steel,” the doctor said as he shook my hand good-bye.

Mark and I spent a few more hours at Cottonwood Hospital in a recovery room and by early evening the van came and drove us back to Western Rehab. The dreaded G-tube was in place and all went well. Mark survived his third operation and I looked forward to telling him that the surgeon confirmed his abs were made of steel.

 

Life’s Ups and Downs

Roller Coaster1Five days ago I wrote about my roller coaster ride with Mark going in and out of consciousness. I didn’t realize at the time, but it was the perfect introduction title for this week. I’ve been on another kind of a roller coaster ride. Last night, at the League of Utah Writers Contest, I was thrilled and awe struck when I was awarded second place in the first writing contest I’ve ever entered.Today, I was drastically dropped down after meeting with a general surgeon. It seems an operation is the only fix for my hernia. Wait! I don’t have surgeries or need care—my role is to be the caregiver. How could this be happening? I don’t think I should scream or close my eyes in shear terror, but it’s hard to enjoy the ride while trying to figure out the details for Mark’s care who most likely needs hip surgery. The details of that surgery will be known after his doctor’s appointment on April 2nd. Either way, it’s difficult for me to imagine anyone can take good enough care of Mark other than myself. I’m not looking forward to this recovery ride, or being out of control of our circumstances. However, I will do my best to raise my hands up in the air and enjoy the ride.

Roller Coaster

Understanding Traumatic Brain Injury, Part 2

While Mark was at McKay Dee Hospital, I was introduced to the Glasgow Coma Scale (GCS), which is used to measure the depth of a coma. When Mark moved to Western Rehab they used the Rancho Los Amigos Scale, also known as the Level of Cognitive Functioning Scale (LCFS). The treatment team used this scale as a guide for his therapy plan. Their strategy changed as Mark progressed from one level to the next. They believed Mark would have to go through each level, without skipping one to progress. Consequently, the team was always encouraging and working to get Mark to the next level. I don’t believe Mark ever went through the dreaded Level IV. I did see other patients go through this level and it was upsetting, not only for the patient and family, but for all who witnessed the confusion and agitation.

Each person with a brain injury moves through the cognitive levels at various speeds. Some patients will be discharged from the hospital prior to progressing through all ten levels. I brought Mark home at cognitive level VI.

Level I – No Response: Patient needs total assistance and appears to be in a deep sleep or coma and does not respond to any external stimuli.

Level II – Generalized Response: Patient needs total assistance, but moves around. Movement doesn’t seem to have a purpose or consistency. This reaction may be due to deep pain. Patient may open their eyes, but does not seem to be focused on anything in particular.

Level III – Localized Response: Patient needs total assistance, but begins to move their eyes and look at specific people and objects. They turn toward or away from loud voices or noise. The patient may follow a simple command such as, “squeeze my hand.”  Responses are inconsistent and directly related to the type of stimulus.

Level IV – Confused and Agitated: Patient needs maximal assistance. They are very confused and agitated about where he or she is and what is happening in the surroundings. At the slightest provocation, the patient may become very restless, aggressive or abusive, verbally and/or physically. The patient may enter in incoherent conversation in reaction to inner confusion, fear or disorientation. Safety and deficit awareness are important issues.

Level V – Confused, Inappropriate, Nonagitated: Patient needs maximal assistance. They are confused and do not make sense in conversations. They may be able to follow simple directions. Stressful situations may provoke some upset, but agitation is no longer a major problem. Patients may experience some frustration as elements of memory return. Follows tasks for 2-3 minutes, but is easily distracted by environment.

Level VI – Confused, Appropriate: Patient needs moderate assistance. Speech makes sense and they are able to do simple things such as dressing, eating and brushing teeth. Although patients know how to perform a specific activity, they need help discerning when to start and stop. Learning new things may also be difficult. The patient’s memory and attention are increasing and they are able to attend to a task for 30 minutes.

Level VII – Automatic, Appropriate: Patient needs minimal assistance and can perform self-care activities and is usually coherent. Behavior is appropriately in familiar settings and shows carry-over for new learning at a lower than normal rate. They may have difficulty remembering recent events and discussions. If physically able, patient can carry out routine activities, but has difficulty with rational judgments, calculations and solving multi-step problems. Patient may not realize this and needs supervision for safety.  Patient initiates social interactions, but judgment remains impaired.

Level VIII – Purposeful, Appropriate: Patient needs stand-by assistance, but is independent for familiar tasks in a distracting environment for a short period of time. He or she acknowledges impairments, but has difficulty self-monitoring. Emotional issues such as depression, irritability and low frustration tolerance may be observed.

Level IX – Purposeful, Appropriate: Patient needs stand-by assistance on request, but is able to shift between tasks for two hours. They require some assistance to adjust to life demands. Emotional and behavioral issues may be of concern.

Level X – Purposeful, Appropriate: Patient is modified independent and is goal directed, handling multiple tasks and independently using assistive strategies. Prone to breaks in attention and may require additional time to complete tasks.

Resources: http://www.tbims.org/combi/lcfs/lcfs.pdf , https://www.jhsmh.org/LinkClick.aspx?fileticket=8hAd-OqTIQ0%3D&tabid=298

I hope this information is helpful in understanding the recovery process from traumatic brain injury. Did you or your loved one go through each level? At what level were they released from the hospital?