The spouse is often forgotten. Their role as caregiver is not fully appreciated by those not experiencing it. It is easy for folks outside of the experience to forget Rick in all this too as he is healing along with me – he is BRAVE and the most amazing husband and father in the world.
Let’s give a shout out to our Caregivers, the warriors and the silent walking wounded.
Check it out on our newly added Web Page:
For the first several months after my TBI you couldn’t have paid me to stay awake. I was always sleeping – in between bouts of pain of course. However, I just could not seem to stay awake. I would think to myself, “Stay awake Caren”. Just couldn’t manage to do it, no matter how hard I tried.
I didn’t care where I was either. Sitting in the wheelchair, at a doctor appointment, during therapy, on the toilet, in the shower, trying to read, while eating, while drinking, while talking, typing on my computer, home or away I was constantly falling asleep.
Not only was I sleeping 12 hours or more a day I was also embarking on several “mini naps”. I attended 3 sleep studies in the first 18 months after the wreck. I eventually was diagnosed with Hypersomnia vs Narcolepsy. There was no history of Narcolepsy in my family or with me. Finally it was determined that this Hypersomnia was a result of my TBI. This was a fatigue so intense that simply waking up and having help getting dressed was enough activity to illicit another “nap”.
I would also sleep HARD. This often scared my family. By that, I mean that my family would try to wake me up for medication times, or for meals, or appointments. Sometimes they would call my name repeatedly, shake me, run a thumb up the bottom of my bare foot. Anything to get a response and I would soundly sleep through it all. Apparently, to hear them tell it. I slept like I was dead, not even a flinch. I lost the ability to hear alarms or get woken by one in the first 4 years. Once awake it would take a long time to get my head together, realize where I was, that I was okay, and what was going on in the moment. For the first couple of years I lost my ability to dream….or at least remember them. This was odd as I used to dream in living color before the wreck and remember ALL my dreams.
Medical appointments were agony. I was fatigued BEFORE I got there and getting out of the house took over an hour…on a good day. The level of fatigue felt AFTER the appointments was like a heavy weighted straw sucking the life out of me. I needed to sleep NOW or I knew I got grumpy fast. Often times followed by a wall of tears.
Keep in mind I still had numerous fractures as well for the first two years that went unhealed, so I was also in pain ALL THE TIME. I was not a happy camper. Trying to be positive took a lionshare of my energy as well. Add on to this multiple surgeries and recovery time just from that, and the clock on my recovery started all over again after each surgery.
Sometimes I would be talking to someone and it was daylight outside, I was propped up in my hospital bed at home and suddenly I would wake up, and it was dark outside. I was unaware I had even fallen asleep in the middle of a conversation and been asleep for hours. I would often feel confused, guilty for sleeping so much, and still exhausted.
From home I tried to keep up with emails, phone calls, communications with the schools, etc like I did before the wreck. Um, yeah…I failed miserably at these attempts. I would forget what I was doing, who I was talking to, what I was typing and it was a mess. I am amazed that most of all those same people still talk to me. I was so flighty.
Every emotional upheaval caused fatigue. I can tell you that there were a LOT of emotional experiences I was constantly wading through. I noticed I couldn’t read a book! This was upsetting as I used to be an AVID READER. I couldn’t do word searches. I kept trying, however it would make me puke. I could read information on the computer in small doses, often falling asleep while on it. I was in a world I did not recognize. Even the lights on the ceiling in the store or at the hospital made me feel fatigued. My eyes burned from the lights. Even at home the lights bothered me. I spent a lot of time with a neck pillow covering my eyes or my head covered or buried in a blanket in a low lit room. If the room was dark…even better. I couldn’t even listen to the TV in the first few months. It took almost a full year before I could watch a one hour television show without feeling overwhelmed. I remember there was just to much movement on the shows. There was too much to look at and it made me nauseous. So the family spent many a movie night with me sequestered to my hospital bed drinking up the dark quiet and solitude. I was also dealing with horrendous headaches, dizziness, and room spinning feeling. On top of that the room would slant by the end of the day. I always felt like everything was “crooked”.
I remember some frequent moments I would stare at words unable to read them. I have always loved words, their definitions, and studying language. My favorite board game USED TO BE Scrabble. I even won spelling bees when in school. So for me not to have a grasp of language and words has been the biggest loss for me. It would take me a while to figure out what the words were, what they meant. It helped to have my family read things to me, especially medical releases – where there were LOTS of words. I would hold a pen and not remember how to write. In fact, where I ALWAYS used to write in cursive before the wreck, I now had hen scratch printing. To this day I still print now. It’s bizarre. I will say it has improved quite a bit in the last 4.5 years though. I had trouble getting the words in my mind out of my mouth, while at the same time trouble finding the right word to describe what I was talking about. I did a LOT of substituting words that meant other things. I still do that, yet not nearly as much.
I have always been a perfectionist my whole life. I would say that this intensified after the wreck, and yet I was too fatigued to follow through on anything. This was continually frustrating. I was upset about forgetting so much. I would forget what I was saying right in the middle of saying it. I couldn’t track my thoughts and I kept making mistakes. I was introduced to writing everything down in a notebook from a speech therapist in NeuroRehab. This was and has been a lifesaver to me. The only issue thought that still kind of plays into a challenge is I forget I wrote something down. This is often comical now to me, though I did not used to handle it lightly at all. Sometimes still, I will go back and read what I wrote just to refresh my memory on things. I have gotten better about using the notebooks less and less. However, anytime I try to go without them completely it is generally self-sabatoging.
After a while I suddenly developed insomnia. What the heck. I was either a hypersomniac and sleeping all the time or not sleeping for a day or two because my mind would not rest. I would lay there with my eyes closed and nothing…that was more towards the second year though. Around this time I also started transitioning from the hospital bed back to the regular bed with my husband a little at a time. That was a pretty special piece in the recovery process for us both.
Trying to push through the ongoing fatigue, feeling of being drained, or having an anxiety flare would cause a certain guaranteed meltdown if I pushed myself to try and overcome those moments. Sometimes of epic proportions. I have gotten better about managing this though. I have learned that when my brain and my body is done, they are done NOW and I need to respect that. I have to plan way in advance and conserve energy, days in advance of an event, trip, or day of appointments. When it is a busy week, I spend a lot of days playing catch up on my energy. This often involves a lot of sleeping still, often coupled by crazy random muscle spasms.
My sleep has improved though in the last 5 years. I still have bouts of insomnia, but not nearly as much. My sleep has actually mostly normalized. I get an average of 3 -10 hours, with the most common being around 6 hours. Still naps here and there, though not sleeping 20 hours a day anymore.
I actually attribute a lot of that to having gotten prism glasses, vision therapy, and just a lot of time for my brain and body to heal up some and reroute itself. I have done a lot of brain games, a lot of research, and acquired care that has helped me get to the level I am at today; helps me continue to manage my pain most of the time, and I am now able to spend some bursts of quality time on some of the things that add value to my life.
I haven’t been able to combat the fatigue yet. However, I have learned quite a few coping mechanisms that help me be more active and involved in most of the things in my life now. I have a lot of strategies in place that I utilize every day. Some exciting developments as well. This past Summer and early Fall, I started being able to hear some of my alarms again. I cannot tell you how excited this made me. I don’t always hear them still, especially if I am super duper exhausted and pushed myself too far. However, I will take sometimes over not at all.
I have learned more and more as each day passes that time is a completely different animal than energy. Why is it that I don’t seem to be able to accomplish anything like I used to in a day, even though I have all this time given to me? What I did not have, and still struggle with, is having energy, especially energy related to my cognitive base. So you can have all the time in the world, if you have no energy to go with it…not much is getting done.
So I pace myself, plan, plan, plan and gently glide outside of my comfort zones to live up to my desire to help others in the best ways that I can, for as long as I can in a single day.
Then, after all is said and done, I haul myself up to my bedroom, collapse into a well deserved exhausted heap…..and sleep.
I had a memory come to me of a provider asking me if I felt I could handle my children at home. If I felt capable of going home with a house full of children with all the needs that they had. If I felt ready to go home?
This was at some point after the wreck. I don’t have any concept of the timing of this question. I also don’t have any concept of who the provider was that asked it. With the memory of those questions though, came the memory of my feeling about the questions. My instant thought was “Hell no I wasn’t capable, couldn’t they see me?”….my emotion was FEAR and PANIC. The actual words that came out of my mouth I don’t recall. At the time we had 6 kids in our house and I couldn’t wrap my mind around how I was going to be a mom to any of them anymore. I had no concept that it was actually 5 kids at home because one of them had left for college the week after the wreck. It saddens me that I don’t remember any of this.
I do know that those two questions made me afraid that if they knew how messed up I felt in my head, or how much I was disabled, that my children would be taken away from me and I would be deemed as unfit. I could not fully understand what was going on with me or what had happened to me. I couldn’t think how the kids were being taken care of while I laid there fighting for my life. I was afraid I was going to die and no one was telling me that. I wasn’t ready to die yet. I felt death pulling me into that dark abyss though, and to be transparent, often I was very tempted to allow the warm embrace of death to consume me if it meant I could shed that pain that rippled through me with every movement and breath. Yet the thought of my children, my husband, my mom….they kept me here. They kept me fighting for life. Despite the pain. Despite me being consciously unaware of their existence.
I could feel my broken body and I could not do even simple tasks without pain.
Hell, I couldn’t even stay awake long enough to string one thought to another. I couldn’t take a simple breath without pain. I could not rationalize that I had a husband who could take care of the kids, or how much time had passed of this already being done for several weeks at that point, which would extend into 3 months. I couldn’t rationalize that at the time, I had relatives that could help out (or that the burden of my care would change these dynamics as well). I couldn’t rationalize that I wasn’t well enough or even ready to be sent home yet, or what being sent home would have looked like to me or my family. I couldn’t organize my thoughts, my notes, my emotions. All I knew was that I was seriously screwed up. The wall of pain that coursed through my body was beyond unbearable. My husband said that the hospital spoke to him about putting me into a drug induced coma so I wasn’t suffering the pain they were unable to manage for me. My husband said he talked to me and I did not want that. He honored that. His fear was also that I would not wake back up if they did that. He at least could hear me talk. Even though I have no memories of those conversations or that I was alive at all. I do remember the fear of not being able to walk, sit up, or do things for myself. We didn’t know at the time that I wasn’t really lucid anyway. Brain Injury will do that. Trauma will do that. Polytrauma will do that. I don’t know what the best decision would have been. I am still alive now, so there is really no way to know.
I knew I wasn’t thinking correctly. Something was off. I felt like I was in a haze. I felt like I was in a mental vortex and at times felt I had to pretend to be okay or better than I actually was, just so I didn’t lose the kids. I wish someone would have told me that they were asking me those questions to see what help I needed at home; to see what in home services needed to be provided; to decide if I should have been kept longer in the hospital or not. I wish someone would have told me that I was not in danger of losing my children to child protective services just because I could not presently care for myself or them. This would have alleved that fear. I wish someone would have told me that the kids are safe with my husband and had been for several weeks now. Maybe they didn’t tell me because it was obvious to them. I on the other hand, couldn’t figure it out. Every waking moment was a confused and painful state of existence.
While I was laying there, I didn’t know how to answer those questions they asked. I was seemingly focused on my healing where I was at. Then again, maybe they did inform me of all those things, and I just don’t remember.
My thoughts were, how could I take care of my children when I couldn’t even care for myself at that time? How could I function when in so much pain, that even breathing was painful? How could I feed them, take them to school, how could I even tolerate their company when all I wanted was silence and darkness all around me. The lights pierced my eyes like nails being driven into my flesh. The noise around me was amplified as if every small sound was being put through a large speaker.
The sound of shoes walking in the hall was enough to make me vomit….literally. How could I be a mom when I couldn’t even wipe of clean myself? How could I say I didn’t want to go home? How could I say I didn’t want to be a burden? How could I say that I was afraid I was going to die if I was left in that hospital for another day?
How could I say that I was afraid if I went home then I would be going home to die? How could I answer anything logically when logic ceased to exist?
The inner drive to live, to exist, to be more than what I was in that moment I believe is what kept me here. The support and love of my family being with me each day and calling me back to reality kept me here. I believe, that even though I did not build memories to remember their presence, having their presence kept me grounded to life. This helped me fight through the pain, hold on to possibilities. Their determination for me and upheaval in their lives allowed me to eventually heal and begin to flourish in mine.
Those questions flooding my memory…..they were unfair to me. I was not in a mental or physical state to answer them authentically. I had no ability to be rational or process thoughts in the way that was necessary. How was my husband not given those questions? How could I make such an impactful decision being as broken as I was?
I don’t recall if I ever talked about this with anyone. However, throughout various parts of my recovery, I fought against the part of my thoughts that just wanted the pain to end, the medical appointments to end, the therapies to end, the ultra slow progress to just stop and the thoughts that seduced me to see death as a much more favorable option, by any means necessary. At my core, I had always been against suicide. My FAITH would not allow me to cross that line. Though I did tiptoe on that line for quite some time. I did not want to go that route, even though I entertained different ways I could die that would hurt my family the least. None of them seemed possible. What if I wasn’t successful? What if I messed it up? What if they thought I didn’t want them or love them? What did I do to deserve this? What did they do to deserve this? What if they don’t love me any more now that I am all broken? What if I live and I am always broken? What is the point in fighting? What is the point in enduring? How much am I really supposed to take after all? Will I ever walk again? If I don’t what will that mean to me? If I do, what will that mean to me? Where can I run when I can’t even sit up by myself? The thoughts were torturous.
What do you answer about being able to go home and if you are capable of taking care of your children when you are going through all that in your body and in your head? Then add on top of it, the inability to get the words from my head to match what came out of my mouth or onto paper. I used to be so good at this….*looking at my hands* …what’s wrong with me? Why does my body continue to betray me?
In the end though, here we are nearly 5 years later after the wreck. I pushed through all that. I gave up focusing on those dark thoughts (though they still knock at times) and forced myself to focus on surviving, enduring, living. I focused on the positive mantras taped to my hospital walls by my family. I focused on the word that was hanging in my direct line of sight each time I opened my eyes – placed there by my mom….. HOPE. My main focus, drive, and reason for moving forward. I embraced and embodied it and never gave up.
The reality is that I am still adjusting to my new normals. I am still getting used to being an active mom again. All the responsibilities, the time, the effort, the deep sorrows, the sweet joyful highs of being a mom they either speed or slow a person’s recovery. They are a continual work in progress. Sometimes though, time seems to stop when I have a pain flare or just cannot get my mind to work like I want it to, when I want it to. I am then reminded that I can never go back to who I was before the wreck.
She doesn’t exist anymore. She died at the scene of that wreck. However, the woman that lived and got to be a mom still….she is filled with HOPE, gratitude, and sees the possibility and a reason to thrive in each step, hug, kiss, and smile of her children.
So those questions. Can I handle my children at home?
Some days still it’s a resounding yes and some days it’s a deafening no. As time passes the yes days become stronger than the no days. However, even the no days are quietly whispered yes days…..as being a mom is the greatest thing in the world….broken or not. Sometimes, in those first few years after the wreck, being a mom and knowing they needed me to show them how to overcome, how to never give up, how to struggle and survive….this is what drove me to make my appointments, therapies, and helped me out of bed, out of my room, and out of the house. If I were being introspective, it drives me still. I want them to be survivors, not victims of circumstances. I want them to find their strength in my example. I want them to thrive.
Was I ready to go home? Absolutely not. That was an unfair question to me from the start. I was not even with it enough to consent to anything. Let alone my release. That was a decision that should have been made by my medical condition at the time, which I was unable to conceptualize, understand, rationalize, or make any conscientious or informed decision about. I was sent home too early. This was an enormous burden to my family that created a domino affect of challenges that we still feel the affects of to this day…..especially financially.
However, I am grateful to have had the opportunity to heal in a familiar environment. This part I believe was an important transitional piece to my recovery. I still have quite a few things I struggle with cognitively, orthopedically, and other areas.
The kids are forgiving and mostly tolerant. They are grateful I am here. They are adjusting as well, though not without bumps in the road, to my new normal which in essence have become their new normal too. When it comes down to it, that inherent need to carry life, to give life, to impact a growing thriving family is still part of my reality….despite the traumas. Every day I am thankful that when we factor in everything that has happened and how things have unfolded, changed, or are different….I sill have the contribution of the Mom Factor that impacts me the most.
Before you take your loved one home from the hospital or care facility, there are things you can do in advance to help prepare them for their transition home, and prepare YOU for one of the most important roles in your life. Absolutely, if at all possible, spend a full few days and nights following your loved one through their routines so you can see what they are actually capable of, what their routines are, and what may be expected of you as their caregiver at home. Know that you will be burning your candle at both ends for an undetermined amount of time.
It will be important to create a notebook, binder, or file with important information that will be available to you without a lot of stress and searching. It may even be helpful to purchase a Planner that includes daily and monthly pages to include everything on. Make a typed or written list of the following:
So your loved one is ready to come home from the hospital. You may feel excited, nervous, impatient, and mostly prepared. Nothing can prepare you for all the dynamics and changes you are about to take on, other than first hand experience. Structure is imperative. Especially if your loved one has a traumatic brain injury. The first two weeks home will most likely be the toughest to adjust to. Don’t get caught up in the idea that they need a “break” and no routines, schedules, or therapies. Recovery is enhanced with structure and consistency.
You may have realized by the end of the first week that you are feeling exhausted and scattered. You may feel like maybe you weren’t ready to take this on at all. Who is this person you brought home? They are so different. They may be painful, irritable, demanding, and impatient. It may be hard not to take this personally. Your time is no longer your own and you are now responsible for every aspect of this person’s safety, health, and recovery process. You may become so focused on what you should be doing next to help with all the things that need to be done that you cannot sleep or slow down your thoughts. You may be feeling like you cannot do anything right….or perhaps you realize you are doing everything right, yet your loved one is not responding in the way you were anticipating they would. You may find yourself tiptoeing around them, being cautious of everything as each hurdle presents itself.
By the end of the second week, you are fully aware of the time commitment that is involved now. You may be losing track of time as your days now seem to run together. You may now be thinking of a thousand things you should have asked, learned about, or prepared for BEFORE your loved one came home. You may be feeling a bit overwhelmed and may even realize that you are not able to do EVERYTHING on your own. It’s okay, you are not alone in this realization. You also may actually be getting a better grasp of the schedule that is going to work the best for you to survive being a caregiver, while helping your loved one progress through their recovery at this point. You will most likely be beyond exhausted and unsure how you are going to be available to your loved one and still meet the demands, responsibilities, and obligations in your own life – that exist outside of your new caregiver role.
Your loved one has gotten used to certain schedules, expectations, routines, push to be independent and compelled to focus on their recovery in the hospital or rehab facility and will come home expecting those same things to be in place at home. They may feel distant, resistant, challenging, and develop unrealistic expectations about what you are able to accomplish for them both directly and indirectly.
Sometimes your loved one, if they have a traumatic brain injury, may have a skewed view of reality. They may have mood changes you are not used to dealing with, have difficulty adjusting to their “new normal”, and may have difficulty accepting the changes they are now facing every moment of every day. You may be having difficulty adjusting to the expansive and growing list of needs and accommodations they now require.
You may have become overprotective at this point. You may be able to anticipate your loved one’s needs before they even ask for it. You may micromanage every aspect of their day. You may also be doing things for them, that they are able to do for themselves with a little supervision or prodding. This is not not good for your loved one in the long term to have you doing EVERYTHING for them. It is imperative that you encourage independence as much as possible. Help them with what they need help with, of course. However, encourage them to do as much on their own as possible. This will take them out of their newfound “comfort zone” and will not always be successful in the first attempt. Don’t get angry if they attempt something and do not succeed, or if they are unable to complete something they have attempted. This effort may takes weeks, months, and in some cases years of consistent attempts for this to happen succesfully. For some caregivers, there is no mastering this aspect of the caregiving process. You may have a loved one who is incapable of independence. In that situation, set small goals for yourself, for them, and partner with providers to celebrate even the littlest victories or accomplishments. Sometimes just getting up for the day, getting bathed and dressed for the day is the best that can be accomplished that day.
It is imperative to eventually include your loved one in as many life activities as is possible. They may not be ready for this in the first few weeks home. Consider trying to take them on very brief, small outings with you a little at a time. Even if just to a convenience store and then back home, the library and back home. Perhaps even just a ride around the block after getting dressed for the day can be a huge accomplishment. You can build to other places, longer times, and more challenging things as time progresses and they are ready. Some things to consider when leaving the house with your loved one:
The largest part of recovery will take place within the first two years. However, this is not where recovery ends. Research continues to show that healing, strength, behavior, body changes, and rerouting of the brain continues – even years later.
It is common to feel sad, depressed, or disappointed if your loved one has not reached the recovery level you anticipated at the one or two year mark in their recovery. Your loved one also may be having some struggles around this time as well. They may have expected to be further along in their own recovery, or reliving the time of year their accident happened and comparing it to their life before their injuries. Families often misjudge the amount of time it will take for their loved one to recover or plateau ; especially if their obvious physical injuries/fractures have healed by this time and you are unable to “see” the traumatic brain injury.
[Potential Providers may include the following: physicians, physiatrist, nurses, physical therapists, occupational therapists, speech therapists, recreational therapists, respiratory therapists, counselors, psychologists, neuropsychologist, social worker, specialists, nurse’s aids, home health aids, medical case manager, family caregivers, volunteers, and/or clergy.]
~Compiled By: Caren Robinson
September is suicide prevention awareness month.
Monday, September 10, 2018 is suicide prevention awareness day.
September 9th-15th, 2018 is suicide prevention awareness week.
If someone talks to you about suicide or harming themselves or if they open up to you about how they feel, listen. Listening to and acknowledging someone can save a life.
Let’s work towards ending the stigma of mental health and suicide. Instead if saying someoneone committed suicide say they died of suicide or they died of depression.
People commit crimes, suicide isnt a crime, it’s the last symptom of depression.