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Holiday Challenges With a Brain Injury

by Linda W. Arms, November 5, 2013

We are now in the middle of the holiday season which can challenge those of us with an injured brain. It is a time when so much more is expected of us than most other times of the year. We along with our loved ones, friends and caregivers should all remember that it’s best to simplify so we can enjoy things more. It’s been nearly 9 years since my brain injury and I’m doing much better but I have to remind myself to keep things simple instead of doing all the things I “should” do, or the things I did before my injury.

This season brings so many more demands on our brain. We have to do a lot of extra things such as buying gifts, putting up decorations, doing more cooking and interacting with more people at social events. We have to maneuver around very busy stores, and the entire holiday hubbub on the roads and parking lots. The holidays can also be an emotional time because we might think back to our past selves when we could do so much more. We might feel our loss even more and feel that familiar grief.

Brain injury survivors and caregivers should take extra care during this time for rest, finding quiet spaces and doing less of what is expected during the holidays. Those of us with a brain injury probably are much more settled and can enjoy this time better if we don’t have ALL those decorations, especially flashing or moving lights all around us. They are overwhelming for our poor brains to process and contribute to sensory overload. Plus its a lot of work to put up so many decorations and take them back down. I put up just a few decorations and I can feel a strange anxiety of having those extra things to look at as I process my surroundings.

You also need to learn to say no to some things. I’ve turned down large family get-togethers in these past years because of all the challenges of interacting, a lot of noise and making your way through the groups of people. And then, of course, we have to remember that when we over-do-it one day we have to pay for it the next.

Ask for help. Instead of doing most of the cooking for a special meal, make it pot luck. Everyone contributes a dish or two. Instead of running to a lot of stores for gifts, buy online. Reduce the amount of gift giving. Many people are happy to opt out of gift exchanges or to cut back from earlier years.

Simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season. Find ways to enjoy the holidays with quieter moments. Keep it simple and you’ll enjoy it more. And remember More is Not Better

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Preparing for the Holidays

by Linda W. Arms

As the holiday season gears up, we need to remember to take care of our injured brains so we can enjoy the season more. We need to prepare ourselves to make it through the holidays without too much more fatigue or stress. We need to be ready for that party, dinner, driving to an unfamiliar place, or something else we may not often do. Here are some tips that work for me since my brain injury:

Pace yourself – don’t commit to more than you can successfully handle. Don’t overdo the shopping, the cleaning, and the cooking or other activities. Give yourself a quiet day before going to that party or dinner. Take a nap or just lay down and rest. Do everything in moderation.
Get organized in advance. Write things down to help you remember what you need to do. Why burden your brain by trying to keep it all in your head?
Prioritize – only do what is important. There are probably things to do that you can put aside until after the holidays.
Ask for help – with the shopping, the cooking, the cleaning or whatever else it is.
Keep things simple – simplify the decorations, the gift giving, the meals and everything else that is part of the holiday season. Find ways to enjoy the holidays with quieter moments.
Eat properly throughout the day to nourish your brain so it can do a better job for you. Drink recommended amounts of water.
Determine how to get where you have to go before you leave. I like doing this the day before so I can study the Google map and try to think about it for a while before I get on the street. I even do a “street view” in Google Maps so I can be familiar with the area I’m travelling to. My TBI resulted in me losing the map of where I’ve lived for the last 30 years and not having a good sense of direction anymore.
Determine how much time you need to get there. Give yourself some extra time since stressing causes an additional load on our brain which we want to avoid. Write down what time you have to leave, what time you need to start getting ready. I have trouble with time and remembering the numbers. I write it down so I don’t have to re-think this 10 times before I go.
Determine what you need to take with you and what you are going to wear. Doing this well ahead of time saves that last-minute pressure that makes it difficult to function if you have a brain injury.
Determine, in advance, your way out of the social situation or other activity if things are not going well for you. You may need to find a ride home. You may need to leave early before the dinner is over. You may need to cancel before you even leave the house. It’s good to let others know that you may have a problem and that you just have to escape before you can’t function well enough to get yourself back home safely.
If you’re going to a new place for dinner, study the menu on the Internet before you go. I found it very hard to focus on a new menu and figure out what to eat when I just couldn’t keep up with the busy restaurant environment and people at the table talking to me. It’s easier to decide in advance if possible.
Try to get a table in a quiet, less busy part of the restaurant. I often get a table away from the hub-bub and I sit facing the wall so I don’t have to see the movement in the restaurant. I sometimes asked the waiter to turn down the music.

The idea is to save brain energy so you can have a good time. Enjoy!

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Abandoned????

by Linda W. Arms, DATED 11/15/2013

Were you very dependent on others after your brain injury? Did you need assistance, support and care from others just to get through each day? For some of us, it was an extreme dependency because we were flat on our backs. For others, like me, we moved about but everything was difficult. We needed someone to cook for us, to clean, to drive us to appointments, to keep us stimulated when we rather just hide in a hole. We needed someone to help us make decisions, to resolve problems, to take care of personal business, to read something and interpret the meaning for us….so much dependency on others to live our lives. Life on our own was almost unthinkable.

As we improve, we begin taking on more of life’s tasks. Sometimes we don’t do them so well and need to be rescued. Often our caregivers watched over us as we tried to do things and stepped in to help. Sometimes we just couldn’t continue with the task because it turned out to be too taxing. How many of you started a meal, or another task, and just had to stop in the middle of it because it became too overwhelming. Who helped us out when we failed? Our caregivers.

Our caregivers are loved ones, friends, volunteers, professional service providers and others. They are desperately needed during our many difficult days with our injured brain. As we get better we depend on them less. They begin withdrawing from their role. They go back to work. Back to their own lives. Move on to others who need their help. It is all to be expected but still in some way, at some point, we may feel abandoned.

After my brain injury, my husband and daughter stepped in and took over my life for me. Things were taken care of around me. They told me when to eat, they cooked, and they did the grocery shopping. They handled conversations with people when it was too overwhelming for me. They did the thinking for me. I was always so, so tired. I slept 14 or more hours every day.

As time went on, months, even years, I slowly started doing more. They went back to the lives they were living – to work, to school, to socialize with other people. At some point in my recovery, probably around year 3 or 4, I started thinking, “hmmm…. well what about me? Here they are being very normal people and they have a life outside the home. Mine was gone. The life, as I knew it before my injury, was in shambles. Most of the time I didn’t care because I didn’t have the energy for much, and most activities outside the home were overwhelming. But still, there were times I felt left out. As time went on and I continue to improve, I think even more “what about me?”

Like many of you, after a brain injury, we have to start rebuilding our lives. That is where I am at these days. I’ve been working on it actively now for about a year. I’m sure there are many of you in the same position as I am. Perhaps we all have felt a bit like we’ve been abandoned by the people who took care of us. But it is normal and to be expected that they move on with their lives and it is what we, with the injured brain, must also do.

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More Is Not Better

by Linda W. Arms, dated Sept. 15, 2013

After a brain injury, more of many things, is not better. It is not better to see more things around you; it is not better to be given more choices; it is not better to have more things to do; and it is not better if someone tries to explain something to you in multiple ways so you can get what it is they are trying to tell you. After my brain injury I definitely want less of most things. I can do so much these days but I have definitely lost my edge. Some of you have lost even more, so I expect you don’t enjoy more of everything either.

For most aspects of our lives, it is better to simplify and remove the multiples of things we don’t need. This could mean simplifying things around the house by removing the clutter. Remove things that you rarely use from your closets, cabinets, shelves and drawers. Having to look at so many things requires your brain to work harder. Make it easier on yourself by relocating things you rarely use.

Having too many choices is overwhelming. If somebody told me you can do A, or B, or C, or maybe D; it just made my head spin. I couldn’t and didn’t want to think about each possibility and make a decision as to which option I preferred. It felt like torture.

Having many commitments of your time and energy is also too much for many of us with a brain injury. Just knowing that I have many things on my “to-do” list is often overwhelming for me and causes the brain fog to set in. I can only focus on a few things at a time. I have a big to-do list but I pick just a few items to put on a daily/weekly list. I don’t look at the big list on a daily basis. It’s more like once every week or two.

Words – too many words – can be so fatiguing. Sometimes people feel they need to keep talking to us to explain things over and over and in different ways so we understand. For me, I just want simplicity and a slower speed when people speak to me. I sometimes feel I’m drowning in the words that are coming at me, causing fatigue and frustration. I have had various people speaking to me who were much too talkative and they are close to me so they know my problem. They speak way too fast, using too many words making it so uncomfortable for me that I now refer to it as “brain rape”.

Of course, there are things I want more of, like chocolate, but overall I want to enjoy life at a slower pace, with less noise; less clutter; less electrically produced light; less fast, complex talking; less crowds; less movement around me; less choices and so on. I expect that as time goes on, I’ll be able to handle more of things. During the last 7 ½ years, I’ve slowly increased my abilities to handle more. It just keeps getting better.

Source: http://notoriousbig-river.tumblr.com/post/43170184610

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K.I.S.S. – Part III of “Keep It Simple Sweetie”

by Linda W. Arms

For many of us with an injured brain, communicating requires some extra care and attention. We want to easily understand what is said to us without it requiring a lot more brain energy and frustration. When we were like everyone else, comprehending what is said was so much easier and we often didn’t give it a second thought.

As my previous two posts on this topic mentioned, there is SO MUCH happening that you don’t think about. The brain that is receiving the words/sentences is very busy as it processes all the pieces that make up the spoken communication. At the same time, there are many things happening around us that our just part of the environment we happen to be in such as a restaurant or in an office.

Many things add to the complexity of the communication which results in more work for the injured brain to sort through and get to what is actually being communicated. Here are a few more things that get in our way to easily comprehend what is being said to us:

Distractions – there are always other things happening that distract us from comprehending the words coming at us. Things like TV’s or radios in the background, and other people having conversations requires those of us with an injured brain to work extra hard in filtering out those other things. It is also extra work to understand someone who is busy doing something else while they are speaking to us. Our brain is trying to focus on the words coming at us but at the same time we have to filter out the other activities the person is involved in. I’ve had a hard time focusing on a person’s words when they use a lot of hand motions as they speak. Even excessive facial expressions will interfere in my abilities to focus on what is said.
Sarcasm, innuendo, and those other added complexities of communication – these are those things that require the listener to “read between the lines” of what is said. We have to analyze the implications of what is said not just understand the words. If we have an injured brain, we often just don’t get it. We tend to take things very literally. I’ve often felt left out when others laughed or reacted a certain way to something that was said because I couldn’t understand the innuendo or other twist on words.
Words that sound like other words – an injured brain does not go down too many different paths in figuring out which word was really intended. When my brain was far less nimble, someone said something to me about “lox on the window”. Actually what they said was “locks on the window”. For some reason, I initially comprehended lox (the fish) – on the window. You can imagine my confusion which resulted in me losing the rest of what was said until I could figure out that they really didn’t mean having fish on the window.

Although comprehending what others are saying to us is more challenging for many of us after a brain injury, we have to remember that those “normal” people are just speaking like they always did and like we always did. They can help by paying more attention to how they are speaking to us and what is going on around you. We, with the injured brain, need to keep challenging ourselves to help improve our ability to comprehend. We can’t isolate ourselves. We can’t expect our loved ones, friends or caregivers to turn into robotic style speakers. It does get easier. Now after 7 years I actually understand things much more easily and I actually get most of the sarcasm, innuendo and other things. Now I can look back and actually laugh at how I reacted (or didn’t react) to things that were said to me.

See my earlier posts with tips on communicating with those of us with a brain injury:

Part I of K.I.S.S. – “Keep It Simple Sweetie”

Part II of K.I.S.S. – “Keep It Simple Sweetie”

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Taking Back Control After a Brain Injury

by Linda W. Arms – March 2013

A brain injury often results in us losing control of our lives. Often, because we need the help and oversight, we have to depend on others. We need help with simple, daily living activities such as getting to an appointment because we can’t drive. We need help with simple decision-making. We need help understanding what we are reading or hearing. We need the help of someone else’s brain for so much!

Our loved ones or caretakers start taking over our lives through no fault of their own. We have to lean on them for so much. They make many or all of our decisions, sometimes even for very simple matters. They answer someone’s question for us. They tell us we have to eat or have to rest or stop doing whatever it is we’re doing because they see it’s too much for us or it’s not safe to continue. We want them to do these things for us because it’s too much work or impossible to do by ourselves.

After my brain injury I felt like I instantly turned into an 85-year-old woman and a young child at the same time. I could not move fast and was unsteady. I had little strength. I needed someone to hold my hand to walk across the street, to tell me to stop what I was doing, to take a nap… I wanted someone to comprehend what was being said to me and help me respond.

As I improved, I slowly took over many things people were doing for me. I was not always successful, so I needed their help again. My capabilities were also inconsistent depending on my level of fatigue. My helpers were often standing by, watching and ready to step in. They let me try on my own. It was like being a young child who is learning new things in life. I was VERY grateful for all the help!!! Often I thought, “please, make this decision for me, it’s just too hard for me”.

In recent years, however, as I improved, I needed less and less help. It is sometimes a little difficult taking back that control over your life. Those you counted on became too used to taking over for you when you could not do something. As you improve it is often a bit challenging and even confrontational when you start taking charge of your life again. After all, you’re a big girl (or boy) now and you can do it by yourself.

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Why is Eating So Much Work?

by Linda W. Arms, Feb. 7, 2013

After a brain injury, everything seems to take so much energy out of you. One of our most basic needs, nourishing ourselves, can be a lot of work. Obviously cooking involves a lot of cognitive activities but even eating can be challenging. After my TBI, it was difficult to sit at a table and eat. I would often eat part of my meal and be so exhausted that I would have to lie down.

Think about everything that is going on at the table while you’re eating, especially if others are with you. Another person is moving their hands to pick up the fork, cutting with a knife, moving food to their mouth, reaching for a dish of food… They are picking up glasses to drink. They talk. Maybe a radio or TV is on in the background. There are plates, glasses, napkins, and other things on the table and all around you. All of this is being processing by your injured brain. On top of all this, you have to feed yourself. All those little actions that have to be handled by your brain. Can you see why it’s exhausting?

I had visual problems after my brain injury that took a few years to be resolved. It was very uncomfortable for me to sit at the table and eat. I wasn’t particularly hungry and then adding the stimulation of being at the table was too much for me. Even my own hand movements of eating and cutting the food were too much visual stimulation. I would sometimes feel nauseous from the hand movements. For some reason, clear glassware on the table caused a problem for me also. I think my brain couldn’t quite figure it out, looking through it or whatever but the more there was on the table the more difficult it was for me to look at it.

I also had a sensitivity to sound and light. Think of the sounds at the table that your brain has to process. Bright lights around you add to the level of stimulation. I used custom fitted musician earplugs to muffle the sounds around me but, unfortunately, having them in my ears while eating did not work very well. The sound of me chewing was very loud which was disturbing. The chewing sounds would also drown out anything someone was saying to me. I knew I had to eat but the experience was not comfortable or enjoyable. I’d eat a bit and then take a rest. This is a lot for an injured brain to deal with just being at home where your surroundings are familiar, imagine the additional burden when you are out at a restaurant! Just remember it gets better as your brain heals. Know your limitations, and try to control your environment to keep things that trigger your symptoms from taking over.

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K.I.S.S. – (Keep It Simple Sweetie) – Part 1

by Linda W. Arms

This is for family, friends, caregivers and the many people who are part of providing medical services to those with brain injuries. First of all, thank you for your care and concern during our journeys from our brain injury event to where we find ourselves today. It is not easy for you either since you probably have to do a lot more because of things we aren’t able to do. You also have to have an extreme amount of patience. It is not an easy job. We want you to understand us but sometimes it hard to know ourselves.

Comprehending what is said to us is a big problem for many of us with a brain injury. The words coming at us often don’t sink in for a variety of reasons. This makes it difficult for us to understand what is being said and it can be very fatiguing and frustrating. Once we’re “brain fatigued” everything else is difficult until we have a chance to recover.

Here are some very friendly reminders to make communication easier for us:

Speak slowly – my injured brain has to hear the words and also process them. My brain can’t keep up with what’s coming at me if words are coming too fast. I have to make my brain work a lot harder to keep up with a fast pace (sometimes I don’t even try).
Speak clearly – it takes a lot more brain processing to hear the words when someone is mumbling or speaking towards a different direction so sound is not coming straight at us. Someone with a brain injury may have to spend a lot of brain energy just to hear the sounds let alone process what the words mean.
Get to the point more directly without meandering into other side topics – The injured brain may have problems remembering what was said 60 seconds ago especially if unfamiliar topics are being discussed. We are trying to keep track of the conversation but if there is a roundabout presentation of the topic of discussion we will often get lost. I have found myself trying to remember what seems to be important points but the speaker is going off in other directions. My poor brain is working hard just to remember those points as other words are coming at me that don’t seem to be part of the main topic.