3yrs; Day 1389 – Supermarket therapy
Hi Everyone,
This week we have to focus on positive distractions. The insurance waiting game is incredibly nerve wracking, so keeping busy is the best alternative.
Today we began the day with addition flash cards. You all know Math is NOT Corey’s favorite subject but we like to switch it up so she doesn’t realize it’s actually math.
I pull out the weekly grocery circular and we plan our fictitious menu for her restaurant. We then take a field trip to the grocery store.
For those of you who know me, you won’t be surprised by the following; I took my own trip to the grocery store, walked each aisle, listed the products to coordinate with the aisle headers, and created a “Master Shopping List” that we xerox each time we go shopping. Corey uses her grocery list as a guide to find the items in the proper aisle (heaven help me if the Giant switches it’s displays).
Time to shop! Once all the items are found (scavenger hunt style) Corey checks off the item, notes the retail and/or sale price, adds up the bill and tells me what cash she’d use to purchase the groceries. She quickly reminded me that she could also use a MAC card if she doesn’t have cash. That led to the discussion of credit cards and balancing a checkbook. With an impish grin she stated, “that’s why I will hire an accountant when I own my restaurant”…I think we need some more practice with the full concept of this lesson.
Our second stop was Corey’s bridesmaid dress fitting. It still needs a little adjustment but she will look beautiful!
Today’s distractions worked.
As for tonight…my bedtime prayer will be that my dreams aren’t interrupted by my worries, xoxo
3yrs; Day 1388 – Living to try
Hi Everyone,
We’re in another stressful “hold your breath” reauthorization period. Natalie is writing her letter to medicaid to ask for more sessions. Incredibly, we are in the “it’s unheard of” category for length of approved coverage for outpatient services. My response (as always) is “it’s unheard of” to see a person recover from such a low level injury. For every BUT…I counter with BUT LOOK AT THIS…please send your guardian angels to swarm the recipients of Natalie’s letter, we are looking for another 24 sessions. That would take us an additional 12 weeks. My hope is that Corey will be walking independently before she leaves Natalie. This can’t happen without professional therapy. If she’s discharged or not approved, it’s up to me to be PT 7 days a week.
Corrine has been an uninvited guest recently. I believe it’s because our nursing has been inconsistent over the last two weeks. Continuity of care is critical for Corey. This is another challenge we face; reteaching autonomy and independence.
This past weekend Corey and I watched Secretariat. It was released in 2010 (we were a little busy when it was originally playing in theaters). As I watched Diane Lane play the role of Penny Chenery Tweedy, her fierce determination resinated with me. That was me back in 2010. Almost 4 years later I recognize my fatigue.
As I watched Diane Lanes performance as Ms. Tweedy I admired her presence, her mindset, her defiance, her pride, and her drive. It brought back emotions that have slowly begun to unravel, especially over the last 6 months.
Caregivers are survivors too. It takes the same stamina, fortitude and will to move through recovery with the person you love. We are connected. There is no isolated circumstance. It is life, intertwined and strengthened by the mindset to overcome, succeed and empower. It is also life that challenges this perspective on a minute by minute basis every day.
A verse in the closing song, ‘It’s who you are’, written by Randal Wallace spoke to me;
Learning to bend and not to break
Living to give more than you take
Dying to live
Living to try
Feet on the ground
Dreams in the sky
It’s never how much you have
It’s who you are
It occurred to me, this is our family. This is who we are. No matter how hard the day, we keep dreaming; we keep ‘Living to try’. Everyday is hard as hell but we’re ‘learning to bend’ and REFUSE to break! xoxo
3yrs; Day 1384 – from Corey; turtles get out of bed
Hi Everyone,
We’ve been dealing with Corrine’s evil twin this week but today managed to have break through sessions with Anne and Natalie.
Anne is so pleased with Corey’s range of motion she is ready to push her with strength training.
We have been working at home with a wooden curtain rod (left over from my interior design days). We showed Anne the exercises we do at home and she has added a twist to the routine…an elastic band.
We tied the band to each end of the wooden rod. Then Anne, sitting across from Corey, held the band to add resistance. Corey successfully completed several new exercises. The exercises I remember were two that mimicked the motions of rowing (palms face down on the rod, extending her arms out then pulling the rod back to her chest) and curling (palms up, elbows bent, elastic band under her feet, pulling the rod up to her chin).
Corey did a great job fully extending both her arms, but more importantly adjusted her right arm to allow her left to help with the resistance from the elastic band.
Natalie was equally impressed with Corey’s timed tests for walking, sit to stands and stair climbs. Corey also showed off our newest exercise at home; sitting on the side of the bed, Corey extends her right arm to help her recline, she uses her right foot under her left heel to lift both legs up onto the bed. Once she clears the side of the bed she rolls to her back. She clasps her hands, extends her arms and as she bends her right knee she lifts her right leg over her left and rolls onto her left side.
Next she uses her right arm to push off the mattress lifting her right leg as she rolls onto her back. (Now comes the hard part…getting out of the “turtle position”) At home she grabs her sheet, but at the gym she reached for the side of the matte and as she pulls up with her core (stomach) muscles she uses her right foot to scoop the left foot and swings her legs off the side of the matte to sit back up. This is not a quick fluid movement; in fact its slow and painstaking to watch, but at the same time its an incredibly HUGE accomplishment!
These exercises are just a few we work on multiple times a day. Each stretch, reach, bend, pull and twist moves her closer to physical independence. I tell Corey this is not forever it’s just for now. Her response is, ‘how long is for now’? I don’t know how long or when everything will finally click but somehow, someday it will.
…now if only I could figure out how to get rid of Corrine’s evil twin, we’d be in great shape! xoxo
3yrs; Day 1381 – from Corey; OT fight
Hi Everyone,
We continue to work on Corey’s left arm and leg.
I’m happy the botox worked with her left arm but the left toes are still curling. Corey’s brain appears to be working against the first series of shots in her leg. The calf muscle is huge and will most likely need the next round before we see the significant changes we hoped for from the first round. Despite the stretches we do 2-3 times a day, her muscles are still tight. Some of her tone has decreased but range has not increased. Natalie is considering making Corey a new brace to be worn overnight hoping that will help.
Anne remains encouraged. She is noticing increased range of motion in all of Corey’s left arm/hand muscles.
Corey does not know or remember Anne despite seeing her twice a week; and obviously does not remember her from her inpatient days. Each session we reintroduce her to Anne. Corey’s overall anxiety has heightened since we began OT but we’re working through it. We’re back to helping her label her emotions and talking her through her outbursts.
Anne placed a magazine on the table asking Corey to use her left hand to open the magazine and page through it.
C – NO! What’s wrong with my right arm, it works fine. You don’t have to read a magazine with your left hand.
(She picked up the magazine with her right hand and threw it across the room, kicked the table out of the way and grabbed my arm to pull herself away from the table)
M – Corey, that’s unacceptable behavior. Adults don’t throw temper tantrums when they get angry.
C – SOME DO!
M – Ok, that might be true but we want you to talk to us. This is not about the magazine, what’s frustrating you?
C – (after several No’s) I can’t do it
M – I bet you can. Don’t say you can’t before you even tried
C – (after several “No I can’t’s”)…it won’t work, that arm doesn’t work and I’ll fail.
M – (a lightbulb moment…fear of failure)…there’s no such thing as fail, you only fail if you don’t try. we don’t want you to turn each individual page, turn 20 at a time if you want, we just want to see how well your hand and wrist move through the motion of turning.
C – I WON’T, I CAN’T DO IT!
M – do you remember cheerleading? remember when you were learning the front flippy thing you used to do (she always smiles when I forget the technical term for her gymnastic moves)…you were nervous about doing that but you kept trying until you got it.
C – the front flippy thing is easy compared to this! Turning a page is really hard!
M – (THERE IT IS…THAT’S THE REAL ISSUE)…Thank you! Thank you for telling us why this frustrates you. I know it’s hard now but guess what, when Anne met you 3 1/2 years ago you couldn’t open the magazine with your right hand.
A – …and you definitely couldn’t throw it across the room!
Everyday we peel the layers of the onion to reveal the underlying emotions. Fear, anxiety, frustration, anger and fatigue try to undermine her stamina.
BUT…
everyday;
multiple times a day,
…Corey (literally) fights and pushes through it.
Anne raised the cover of the magazine as Corey lifted her left hand palm down, pinched several pages with her fingers, bent her wrist as she rotated her hand upwards and turned the page on yet another new accomplishment…never give up and never give in, xoxo
3yrs; Day 1377 – caregiver humor
Hi Everyone, Corey’s headaches continue and my headache as an advocate for Corey led me to look for specific motivational quotes for patience.
First I found…
“Learn the art of patience. Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure. Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success.” -Brian Adams
Then I found…
‘If good things come to those who wait, then I must have something ridiculously AWESOME coming my way’
But it was the following prayers I liked best…
‘Lord grant me patience and give it to me NOW’
and my new favorite…
‘Lord give me patience because if you give me strength, I’m going to need bail money too’
Tomorrow is Friday…bring it on! xoxo
3yrs; Day 1376 – from Corey
Hi everyone its corey
sorry for my brief absence but i have been working on getting better even though my head hurts everyday.
today we went to a hospital. not for me but to meet another person that was in a car accident. the mom of the girl has been reading my carepage and asked me to visit them.
its kind of crazy that people want to meet me because i really dont understand how i can help them but then they tell me they want to learn how they can get better like me.
i dont know what the secret is to getting better thats why its hard. i do know its not easy.
maybe its my motto never give up and never give in?
maybe its exercising even when you dont feel like it?
maybe its fighting through the hard days to find something good?
maybe its fighting with your mother when you want to quit? sorry mom
all i know is we are in this together even in the bad times and without help from lots of people no one can get better alone, xoxo
3yrs; Day 1374 – LEAVING
Hi Everyone,
Corey began her new week with another big 1st.
Natalie asked Corey what she’d like to work on today. Her answer, “LEAVING”…fortunately, Natalie doesn’t start her sessions with that request. The ladies walked the halls to warm up, stretched on the matte and Natalie asked if Corey wanted to try something new. Guess what Corey’s answer was….NO…fortunately, Natalie doesn’t use that word in her vocabulary either. After a little persuasion, we have a new achievement to add to the accomplishments list.
Corey walked on a traditional treadmill for 38 seconds today!
Natalie helped with manipulating Corey’s left leg but it was more fluid than she expected. This will open up a new direction for Corey’s PT sessions. It was a pleasant surprise to see how well Corey handled the new machine despite her valiant attempt to lean on Anxious Annie and Nervous Nellie. Once she got going it was all Confident Corey, xoxo
3yrs; Day 1373 – we both fight for our independence
Hi Everyone,
We hope you enjoyed this gorgeous Independence weekend. We had perfect weather and celebrated with close friends.
As liberating and empowering as independence can be, it is a frightening concept for Corey. It is much easier to be dependent and much easier to be cared for. It’s tempting to simply turn your troubles and responsibilities over to someone else. If you do that, however, you lose your self, your direction and your freedom.
I have been working with Corey for the last several months on overcoming her fear of independence. We are focusing not only on her physical abilities (including walking, dressing, personal care etc) but her cognitive, emotional and behavioral abilities as well.
It has been very challenging to re-teach the concept and benefits of living as an independent adult, as Corey is not cognitively ‘mature’ enough to understand the relationship. The major block is her memory loss. After a recent explanation of the benefits, I asked Corey if she understood what I was trying to tell her.
C – the problem is I don’t feel mature. My brain still tells me I’m in 5th grade. I know I’m 21 but I think I feel 14 most of the time. I don’t know how to be mature.
I found this conversation fascinating. Of course she continues to fight us…she truly doesn’t understand why she needs to be independent, in her mind she’s not ready. We see her as an adult but internally she is thinking as if she was in middle school. We expect her to act appropriately often forgetting she has injured the
the center for reasoning and maturity.
Several weeks ago I made a decision. I began teaching her how to become independent as a toddler and she can relearn it again!
I started with her bedtime ritual 3 weeks ago. Normally, we help Corey dress, give her meds and transfer her to her bed. She was terrified to sleep alone and in the dark. I sat in her room until she fell asleep (which often took well over an hour). I’d play music, answer her 50 questions and not leave the room until I was convinced she was sound asleep. Our overnight nurses would wait until she was asleep and then come in to relieve me.
Its taken 3 weeks of using the same mantra; I’m 51 and Mom’s don’t sleep in the same room as their 21 year old children; she was safe in her room, I was down the hall and I would hear her if she needed me (I have a camera/monitor in her room) and she was capable of going to sleep by herself without me in the room. I remind her which overnight nurse will be in; I have to sleep so I can take care of her during the day and I will see her in the morning.
I’m happy to say, last night and tonight I helped Corey dress, gave her meds, transferred her to the bed, kissed her goodnight and left her room immediately. Tonight when I kissed her goodnight she said, “night mom, love you, see you in the morning”.
Independence and self-sufficiency takes great effort, persistence, strength and commitment.
It’s a lot of work and worth every bit of it. Yes it can be frightening, but we have to fight for it. For in that independence, there are endless possibilities and opportunities to explore and achieve the life we want to live, xoxo
3yrs; 9 months – the climb sucks
Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain – Author Unknown
A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral – Antoine de Saint-Exupery, Flight of Arras 1942
Hi Everyone,
I’m pretty sure we’re climbing the mountain looking for the cathedral at the top that hasn’t been built yet!
Tough week and TOUGH DAY and it’s only wednesday…are we over the hump yet?
Corey’s physical strides are far more advanced then her emotional, behavioral and cognitive healing. Please pray they continue to heal…at a faster pace! (The speed of recovery will help my sanity)
When Corey is in the moment, she is very present. She can participate in the conversation, add insightful comments, laugh at the appropriate moments and contribute to the topic. Within minutes of stating her thought and/or the conversation changing direction, she’s lost and forgotten we were discussing any topic at all.
We are trying to work with a new day nurse. This is an extremely difficult process with Corey’s stranger anxiety and short term memory loss. Corey will engage in conversation, pause to write or look away and when she reconnects eye contact with the “new person”, her memory loss sets off an anxiety tantrum. She is like Dori from Finding Nemo but has the temper of Linda Blair from the Exorcist! Poor Leah was forgotten at least 30 times today and we both had to work to talk Corey ‘off the ledge’ with each ‘reintroduction’.
We are on a path of 10 million pebbles. Every day we’re stumbling uphill. I can ‘visualize’ the top but I’m exhausted by the climb. There’s no road map, no signs giving us a clue to the remaining distance to the top and it feels like we’re not wearing any shoes!
As a single footstep will not make a path on the earth, so a single thought will not make a pathway in the mind. To make a deep physical path, we walk again and again. To make a deep mental path, we must think over and over the kind of thoughts we wish to dominate our lives – Henry David Thoreau
Tomorrow we will take more steps repeating the mantra, Never give up – Never give in; We can do this; Matter of Time…keep climbing, xoxo
(Maybe that cathedral on the mountain top is really the ultimate shoe store?)
3yrs; Day 1367 – OT horseshoes
Hi Everyone
Great report tonight from Natalie and Anne.
Natalie felt a big change in Corey’s leg as she walked into the gym. Once she hit the matte, Natalie was very impressed with how relaxed Corey’s ankle and toes were. With a lot of hard work, she could keep Corey’s foot flexed to maintain her range of motion despite her foot getting stiffer/tighter with tone. Since the botox shots, her ankle “melted” and Natalie could push her past her usual block point.
Anne had an evaluation the week before the botox injections. Corey’s ability to lift her left arm independently was difficult. She could open her fingers and hand palm down but was unable to rotate her palm. Today, she had active movement lifing her left arm and rotated her left palm from face down to face right (think of the position to shake someone’s hand).
Today’s activity was to grab a horseshoe with her left hand, rotate it palm up (as if to toss it underhand) and release her fingers for the shoe to roll off her hand onto the spike. Anne was thrilled with her ability to finish this task. In fact, this was the “reach” task she planned for the day. Anne is so pleased with the intial response to the shots, she asked us if we could pick up an extra session per week. That made me VERY happy! Corey will have 2 hours of PT and 2 hours of OT weekly for the next month. We will work just as hard at home to maintain the lessons taught at rehab. It is still my conviction that 15-20 hours of exercise a week is what a TBI survivor requires to successfully recover and regain their strength. Corey is the poster child for this platform!
Isn’t it interesting Anne chose to work with a horseshoe for today’s session? To those that are superstitious, a horseshoe represents good luck and good fortune…(we are superstitious)…As Caitlin would say, “It’s a sign”….xoxo