LOST & FOUND

Lost & Found: What Brain Injury Survivors Want You to Know 

Barbara J. Webster, Lash & Associates

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

HOMECOMING DAY

It is really late July when I am writing this. I am having trouble remembering(imagine), and my intent was to continue as I have been, telling the story in chronological order... and I still think that would be best... but I have so much to catch up on, and I've hit a writers' block. The day Danny came home from rehab was so full of activity, let alone the drive itself....

First of all... we had barely started out and Danny was already carrying on abt wearing his seat belt. He took it off... we told him to put it on... he put it on, he took it off... on and on. He also tried the door a bunch of times. Deanne told him over and over that she had child safety locks and the doors would not open until she opened them. That didn't deter Danny from trying anyway. We had drinks for him and a handheld  game ready.... anything to keep him occupied and his mind off the hour trip. The drink distraction worked for a short time. He talked all the way... complaining abt being buckled in... abt the time it was taking... etc etc. Once out of the city and on the highway, he already wanted to get out "just to walk" or "stand up for a minute"  At the first place we could safely do this, we did. A bank parking lot I think. His mom was in the front passenger seat and helped him get out. He was ok to just stand there a bit with her by his side, then get back in. Then it was the seat belt thing again. I remember laughing when his mom was telling him how unsafe it was for him to ride without his seat belt, all while she was hanging practically upside down between her front seat and his back one. He was full of comments and questions and endless chatter. Oh how I wish I could remember it all.

There were more stops along the way when he would become next thing to hysterical about getting out to "stand"  Deanne would tell him if she was in a spot unsafe to pull over, and he would beg "please! Please!" Anxiety was mixed with light-heartedness...he flitted from nervous to comical. When I put my hand on his leg to comfort him, he told me he had a "big kielbasa" in his pants!
Along the way he started to say he had to use a restroom, and we stopped at a pizza shop. Deanne and I were going to stay in the minivan I think, but could see that Danny had taken off across the parking lot, his mom on his heels, and we could hear them loudly exchanging words. I think she was getting flustered. We got out. He wanted food. In we went, where he tried to decipher the menu. Amazingly, he had seen a sale sign in the window while walking past, for some sort of deal that included lasagna, salad and bread for 7.95 or something, and he mentioned it to me inside. I thought that was kinda amazing. I ordered his food, along with him... we kinda BOTH ordered... me helping him choose his words right. Then I showed him to the bathroom. Deanne had gotten pizza I think, and had it half eaten before he came out of the restroom. He was in there like an eternity!! I went in to help him a little. He was in there fussing about the hand sanitizer and papertowels and being silly...but just confused. Back out at the counter there was a statue of an Italian Pizza guy, and Danny asked him how the food was here...then he laughed and so did I. I still dont know if he was just being funny, or really thought the statue would answer him.

We took our food out to the van and got all settled in again. He was only getting puree food in the rehab, and altho I was pretty sure he was just fine to chew bigger food, I still sat, trying to balance the dishes on my lap, and cut up the lasagna with the plastic fork, into tiny pieces, which I fed him at first. He would barely chew and swallow and was asking for the next bite. I couldn't go fast enough. He was trying to grab the fork outta my hand and put huge bites of food into his mouth. I was thinking, "Just great...as soon as no nurses or drs are watching, he's just gonna do as he pleases"  Same with the neck brace that he tore off all the time in the hospital. He loosened the velcro several times in the van and I put it right back where it should be, while his mom n I scolded him that he HAD to keep it on, especially while riding in a vehicle. He eventually got his way with the seat belt being off. We agreed to let that go so long as he stayed seated and since he was in the back seat. I had just a few bites of the food. He kept asking if I was hungry... told me to eat too. In all honesty I had no appetite. I just wanted to get home.

A long stretch of mountain roadway with no shoulder to speak of, was a nightmare. Danny was begging for another rest stop, but Deanne kept telling him it was unsafe to pull over anywhere there. I tried to keep distracting him with bites of food. Momentarily it worked... then the begging again. I dont remember how many stops we made for him all together, but it was several.  As we got closer and closer to our town, then INTO our town, at each stoplight he was begging to either get out or else HURRY and get to the house. He told her to just go, even when she had a red light.  Finally we pulled up in front of the house.

Inside he kind of just stood there looking around. No real signs of recognition. He acknowledged our dog, Angel, and family members one by one as he saw them...Nick, Shannon and Sarah. There was a lot of weepiness on his part. His mom kept saying "You're HOME Danny! You're HOME!" We pointed out all the welcome posters. He read some of them outloud. His sisters came shortly after we arrived, followed by Chris and his girlfriend. His sister Kim went up to our bedroom with him while he looked around the house. There was alot of noise and activity...talking...laughing...reciting the day's happenings to one another. Kim and Tara went to the store and later came back with puddings and soups for him, and burgers I think? I ran to pick up prescriptions at some point as well. Danny talked silly and was quite entertaining.

As day turned to evening I could sense agitation in him. The rehab staff warned me to keep this day, as well as a few days right after, quiet and with limited visitors. Not realistic. Of COURSE everyone wanted to be there. This was a day we didnt know for sure would ever happen...


When everyone was gone and the house was quiet, Danny sat down on the sofa and got calm in about a half hour's time. I was exhausted and he was too. I got everyone ready for bed and Danny willingly allowed me to change his damp briefs, and crawled into bed before I got there myself. I left most of the bags we brought, to be unpacked next day, and luckily I had the bed prepared with a plastic liner on his side.

We were back in our own bed together...finally. Although he was so very confused, his left arm went out like a reflex when I got into bed, just like it used to, to allow my head to lie upon his chest...and that arm went around my shoulder like it always did. We were home...




My babe is home. The days been long and overstimulating, interesting, hilarious, bittersweet, and very emotional. Will write when i have time. Ive been on my toes all day and danny is utterly exhausted. Had his sleepy meds n gettin him up to lie down for the night.

Facebook on February 4 at 9:31pm 

Nancy Erdman Latsha so glad he is home :)

February 4 at 9:32pm 

Tina Crawford-Roof I am glad he is home with you I know you will take great care of him.I am so happy for you guys

February 4 at 9:34pm 

Robin Kinsey Keppley Try to rest;)

February 4 at 9:38pm 

Ed Smith Good to hear

February 4 at 9:52pm 

Laraine Quinn Glad to hear he is doing well..good luck!! Things will only get better forall of you!!!

February 4 at 10:57pm 

John V. Peletsky Welcome home Danny.

February 5 at 5:09am ·

Liz Leppig Waksmunski So happy that Danny is home again.

February 5 at 9:36am 

Nicole Lang yay im glad he is home with you girl!! i bet you are soo exited.

February 5 at 10:52am 

GETTING READY TO GO

Lieing down with nick. Then prolly gettin up to do some last minute stuff or else just gettin up extra early to finish up and then head down allentown to pick up my babe for homecoming day. The kids n all of us made posters n put up balloons. Im so ecstatic! !

Facebook on February 3 at 11:31pm 

Stacy Derr- Walker I cant even imagine this feeling. A truly amazing story :) You wont sleep a wink :)

February 3 at 11:33pm ·

Tina Crawford-Roof Kathy I am so happy for you both and Nick. You are blessed and I hope you guys have the greatest weekend together

February 4 at 5:57am

The night before Danny's return home, all the kids and I sat and made posters to put up for Danny. I made a big "Welcome HOME Danny" poster, and Nick made one that was kinda a collage of his great memories with Danny over the past 2 yrs. My daughter made one that said "welcome back sir"...in light of his always calling everyone sir and mam, and her daughter Sarah made her own creation as well. My son Chris and his girlfriend Tiffany made one that said "Happy to have you home Danny...we love you" It was all done up in glitter. I still have it hanging up 7mo after the accident. I will most likely leave it up. It is special to me, and I think a good reminder of what has transpired, for Danny...

Its 6am. I am just sitting here in silence with my thoughts and meditating on all that has happened. Entering into yet another unknown phase of this mysterious journey. Feeling tired n overwhelmed, but anxious and excited. Im at a loss for any words at all...pretty unusual for me.

Facebook on February 4 at 6:14am 

Dan Siracusa Glad to see that Danny is getting stronger, and moving down that road of recovery. You also, are a strong person for standing by his side, threw-out this ordeal.

February 4 at 6:42am ·

Robin Kinsey Keppley It'll be the BEST day that uve spent in a long time!! Good luck w everything;) will be thinking of all of u;)

February 4 at 6:42am 

Sherry Peletsky just talked to my mom for a few minutes. Cant wait to talk to you guys later on!!!!!

February 4 at 3:25pm

At the hospital we set about packing up the remainder of Danny's things into bags. Danny's mom and cousin Deanne were there...Deanne was driving us that day. We had no idea what to expect on the trip home. Danny seemed in good spirits. Several staff, from nursing and therapies, were in to see him. Harold was there that day, as was China, another aide, who used to push Danny to do for himself. She was an "I wont take no lazy excuses" type of woman.

CHINA,  DANNY AND HAROLD

I will always remember Deanne and how funny she was that day, because she works in purchasing for a nursing facility, and she went around the room saying, "you pay for all this stuff, so take it home with you" She stuffed all the supplies, bottles, tubes, soaps, oral things, gloves, elbow protectors, etc into bags. I really didn't have an attitude of "take it all with me"...but it was funny....and she was right anyway...haha. 

There was a lot of hugging and well-wishing as we left. Harold escorted us downstairs and to Deanne's minivan, and got us all settled in. Once Danny was inside and buckled in, I gave Harold the hugest big ole hug, and I lost it completely. There was so much I WANTED to say to him...so many feelings I wanted to express...but all I could do was sob and say "Thankyou so much"

I was so grateful. Danny walked out of the hospital by himself, just like I said he would...but was only hoping and praying he would. No matter what ever happened or will happen, I will be eternally grateful that a miracle took place when it came to his recovery. I wasn't aware at the time that such a long road still lie ahead of us...As Harold went back into the rehab, Danny told me that he wanted to say something to him still. Harold came back and hugged Danny....Danny said "Thankyou man...I really appreciate all you did"  It was like a flash of lucidity...it was cool...surreal....and wonderful......and so off we went....

PREPARATION FOR HOME

Total medical bill for st lukes hospital ICU and intermediate critical care(not including 1mo at Good Shepherd):$475,467.17. Having the man i love more than anything in the world spared and getting a second chance at life...PRICELESS!

Facebook on February 2 at 1:15am 

John V. Peletsky That hurts a little bit.

February 2 at 5:10am 

Kathleen Quinn-Farber Well john, guess they will need to accept what little we can pay each month. The itemized charges were utterly silly, but ill be eternally grateful to every emt, dr, nurse and specialist who pulled danny thru. Being a nurse myself, i know its not their fault that medical costs are outta control.

February 2 at 5:20am

Well, it was official...Danny would be going home on Friday Feb. 4th...exactly two months to the day since his accident. I received a bill from the trauma hospital of 475 thousand dollars. When I saw it I couldn't help it...I just laughed. It was so much money that it seemed surreal...There would be many many more bills to come as well.

Therapies were busy with Danny, making sure he could do the necessary things for his own ADLs (activities of daily living...dressing, grooming, toileting, getting around) Dressing was a tad difficult because his left shoulder was sore...and he was still incontinent a third of the time...but he was able to do what he had to in the bathroom with minimal assistance. Occupational therapy worked with him more than anything now...counting money, which he wasn't real good at, and looking at photos of potentially dangerous scenarios to see if he could recognize the hazard and/or solve it. He did about 50% well on most things. His confusion and distractibility were what hurt him.

It was awesome to see the changes in Danny. I remembered thinking about where I would put a hospital bed in my livingroom because I was afraid he'd be unable to climb the stairs well, and thinking about where I would put a bedside commode and how to make it private for him downstairs. In the last two weeks it was becomming evident these things wouldn't be needed. Danny's aunt gave me money for door alarms for the front and back door, because him wandering outside was a real fear of mine, and his cousin Sherry bought a shower bar which my daughter's boyfriend installed for us. I bought adult briefs for him, a urinal, and plastic liners to protect the bed at home.

Wednesday night I laid down with him at bedtime to help him get settled for the night, and fell asleep again. I awoke an hour later to find both of us absolutely soaking wet. LOL, Wendy was there that night, and gave me scrubs to wear home to Barb's.

I had many fears of the unknown, but was excited and anxious to get him home.

We had family training as well that week. Shannon and boyfriend Earl came, and Janna from occupational therapy took us all to the "apartment" model in the rehab to teach us all about safety, what to expect and how to help him. At home I cleaned really well, knowing I'd be pressed for time and busy with Danny once he got home.

Family training went well. Brought 4 bags of dannys stuff home. Tomorrow just in over discharge plans again, recheck all dr appt plans, collect prescriptions, and bring him home. I am just beyond words n so thankful to god n each n every one of you for your prayers and support! One more night without you baby. I love you more than anything!

Facebook on February 3 at 3:39pm

Melinda Young so happy for you

February 3 at 3:45pm ·

Denise Marie Startzel Praise God! Congratulations! Danny is a walking, breathing MIRACLE! I am so happy for you, Cathy! Now you'll know what tired it! BUT HAPPY!

February 3 at 3:52pm ·

Sherry Peletsky Cant wait to visit him some where other than a hospital setting! Get ready for that seafood party we talked about...I am sure it wont be long before he is ready for something other than pureed junk!!! I am getting out of work a little earlier than usual tomorrow afternoon so let me know if you need anything!

February 3 at 4:16pm 

Jeannine Ann Carroll Thats GREAT Kathy, I'm so happy for you.

February 3 at 4:18pm 

Joan Mermon Polk That's great news, Good Luck!!!!!

February 3 at 5:18pm 

Stacy Derr- Walker This whole journey was truly amazing and your love n dedication is a true tribute to Dannys will to pull thru this! So happy for you all!

February 3 at 11:12pm

THE LAST WEEKEND AT GOOD SHEPHERD

Wasnt gonna go to rehab today n instead get some stuff done here at home, but im going down cuz theres more to be discussed with therapies n care management, and things are moving along swiftly now. I wont get there on a weekday when main staffs there again til tuesday if i dont go today.

Facebook on January 28 at 9:01am

Danny asked me 2 print pix of us 2 look at but library doesnt open til 12 so im off 2 make it 4 lunch with him. Mayb computers at rehab have a printer. Yesterday when puttin cream on his itchy knees i made eyes at him n he asked if i was tryin 2 turn him on n i said yea. He said you did that a long time ago so u dont even have 2 do that shit. Aw how sweet my babe is :-)

Facebook on January 28 at 10:56am

On our way to barbs. She is supposed to not be alone tonight cuz of some pretty serious tooth extractions. Tomorrow nick goes with his dad overnight and i spend the wknd with the sweetest guy god ever created. Homecoming is a wk away. Next wk some appts 4 him, and family training 4 us on wed.

Facebook on January 28 at 8:19pm

We had quite a spell of bad weather that last week of January...one ice or snow storm after another. Nick went to spend the wknd with his dad and I spent the wknd between Barb's and the rehab. Danny was getting just a little better at a time every day...small things others wouldn't really notice, were evident to me sometimes. He could be restless, but he was also becomming less anxious...more calm and patient. Occasionally he would take an interest in some grooming. I helped him shave and he actually did well, but only took a trim off his quickly growing beard. It was enough to spiff him up a bit though. He didn't have the attention span to stick with any activity for more than a few minutes, but it was still an improvement.

all shaved and showered

He enjoyed looking at pictures...of Nick and I as well as his family. One of the first things we had all done after the accident, was to bring in lots of pictures and put them up all around where he could see them. On Saturday I printed a bunch and made them into a little booklet. He paged through it all week, noting what he remembered about them. 

One subject we had avoided was his dad. None of us had told him his dad passed away in 2006. He looked at his picture a few times, but didn't ask...and we didn't tell. It just didn't seem like the time.

I was awake pretty near all the time that wknd, at the rehab all day, walking with Danny and helping him do things, and at Barb's up late on the computer. Even when I did lie down to sleep, my mind was just too busy to let rest come. Saturday the staff and I were trying for hours to get Danny to lie down for the night. He was utterly exhausted, and his gait was wobbly. I laid in his bed and George, one of the aides would convince him to come lie down with me, but after a short rest of ten minutes at most, he would get up again. I heard George telling him he would help him wash up and get ready for bed, and I don't remember anything else for a time because I ended up falling asleep. I partially awoke to feel Danny being tucked into bed with me. I wrapped my arm over him, put my head on his chest and fell asleep again. Around 1am I awoke. Danny was sound asleep. I snuck out of his bed and got ready to go. When the nurse saw me leaving she said..."Oh, I was gonna leave you there. His roommate is gone anyway. It would have been ok." I decided to go on home. In retrospect I don't know why I didn't just stay. I guess it just felt odd at the time...

How precious. I went to sleep n danny got washed up n came to bed. They said i could have stayed n slept with him since his roommate is gone now, but i left my sleeping babe n am on my way back to barbs. So hard to leave. But so cool that they would have let me stay.

Facebook on January 29 at 9:31pm

YAY! FINALLY, "YES DANNY, YOU CAN HAVE A DRINK!!"

Danny aced his swallow test! What a sight him walking back onto the unit wearing a huge smile n the 2 speech girls giving thumbs up! Nurses clapped n cheered! I of course could barely hide my tears. He can have regular liquids n puree foods! He got a big choc milkshake right away! 

Facebook on January 27 at 4:09pm

Thursday afternoon speech took Danny off the unit once again to attempt the swallow study. He was still having the same trouble sitting still, and I didn't expect the test to be a success. I told him before he left the floor how important it was to try as hard as he possibly could to sit still for the test. A half hour later, here comes Danny walking with the two speech therapists, all three with big smiles on their faces! "HE ACED IT!!" one of the therapists said, waving a fist happily in the air. The nurses and aides clapped their hands and I of course was in tears. It was so emotional for me...such a massive relief after all the weeks denying Danny even sips of water when he felt he was dying of thirst. One of the therapists went straight away and came back with a huge chocolate milkshake for Danny. It was such a pleasure watching him drink it. He sucked it down holding it in one hand, while making calls to more family with the great knews with the other.

Danny got his puree supper tray. What a trip...he was so comical eating n commenting on tastes n doing funny kinda confused things with the items on the tray. The tube feeds are suspended as well! Today was a glorious day. Its possible now that danny may be coming home in abt a week! 

Facebook on January 28 at 12:24am

At supper time his puree food tray came. FINALLY, he could sit in the dining room and eat with everyone, where before I always tried to steer him away from that area at mealtime, pitying him for not being allowed food. Confused, he was a riot to watch eat. He poured juice into his tea, dipped mashed potatoes into his pudding, opened all the packs of condiments. He kept getting up from the table and being funny with all of us. His eating was kind of sloppy, as though he could not judge how much food to put on a spoon at once. All n all it was a day to celebrate, especially since I was told the tube feedings would be stopping now!! His Aunt Judy wrote the following entry on her Facebook the following morning....

Danny

by Judy Peletsky on Friday, January 28, 2011 at 8:20am

Oh what a wonderful visit with Danny at the rehab center .We got to see him have his first drink, a milk shake, and also his first meal since his accident on December 4th. He laughed with us, smiled all day, asked a lot of questions about the accident and wanted to know how I knew the answers to most of them. He wanted me to say a few bad words and when I told him no he said I won't let you get in trouble. He told me he liked my sweatshirt, then in a few hours told me it was ugly, it's not ugly it had a sail boat on the front. When we went to leave he told us no we had to stay, so we did for about another hour then when we did go he needed to know when we would be back, and in a day or two was not a good enough answer he needed to know the day. I love him so much! What a great young man he is.


Kathleen Quinn-Farber I am so glad you and Uncle Jack got to see that wonderful moment when he was told he passed the swallow study and could eat and drink. It was an evening im sure we will never forget!! God I just love him so much and thank God all the time for giving him a second chance at life!!!! Love you

January 31 at 12:41am

 

PERFECTING SKILLS

Danny went up n down practice steps for me, and then 2 flights of stairs today, and did great. He is practicing stepping up and down curbs, and stepping over obstacles. Tomorrow phone calls again, and some organizing in the house. Up to home depot 2 shop 4 railing 4 opposite side of stairway and in the shower. 

Facebook on January 25 at 8:04pm

Despite 7 missed days due to the accident, being upset for danny, and the chaos of the past 7 1/2 wks, nick was once again only 4 points from straight A's! I am so proud of the kid he has become over the past 2yrs. Danny, you really instilled the desire in nick 2 do his best, have a good attitude abt n care abt his education. IlyD! 

Facebook on January 25 at 8:32pm

Oh my, so many phone calls 2 make, forms 2 fill out, n information 2 organize. I need 2 spend the day sorting thru this paper trail n making lists. I can feel my attention deficit disorder most at these times. Danny would say 2 relax, breathe, pay attention, go one step at a time. Im listening hunny, n we will get thru all this together one step at a time. 

Facebook on January 26 at 11:55am

Almost midnight, still up n finishing wash n odds n ends. Still tons 2 do but not tonight. Up to get nick 2 school then down 2 see danny. The nurse told me when i called tonight that he walked less n rested in his bed more! 

Facebook on January 26 at 11:55pm