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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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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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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.