There's No Place Like Home

Today marks the 102nd day in the hospital....and the last one for Clare!! We've been waiting for this day for so long and she is finally on her way home! Clare has some problems with her memory, but this is one event she has not forgotten. When I walked in today she was picking at her lunch and I asked her if she was going to eat more. She looked up smiled as she said she was saving room for Taco Time and then going home. Anyone that knows Clare well knows she loves those Crisp Bean Burritos :)

As Kris packed up the car, I helped her get ready for the day one last time here at the hospital, we said goodbye to the staff, and she walked out. Clare was beaming! I can't imagine how good it feels to finally be going home.

Kris made sure they both walked out when they were discharged since they were both LifeFlighted in

As my dad and I thought over Kris and Clare's first year of marriage, we decided that they deserve a do-over. The day after they got married Kris went to the police academy and Clare lived part time at my parents' house for a couple months and this accident happened and took up another 3 months....so that being said, let's hear three cheers for the Newlyweds :)

 

As excited as we are for Clare to reach this new milestone and start recovering at home, she does have a lot of challenges ahead of her. As Kris is working, Clare will need lots of help from her loved ones who can stay with her as he works his graveyard shifts until she can take care of herself on her own. Over these next few weeks and months, it would be helpful to know what resources we have to help with this. How blessed we have been to have such supportive family and friends. As always, thank you for all your love and prayers.

The Pendulum Swings

This week marked 12 weeks since Clare's pelvic surgery, and the golden day that Clare could start putting weight on that right leg. On November 23, she was able to walk with a walker. I have to say that Clare really is a trooper. Three months of non-use of the right leg has taken a toll, but Clare is really determined to use that walker all she can to get strong again.

On Thanksgiving, the hospital issued a day pass (for use in Utah County only) and nine of our family had our feast in Bethany (Clare's sister) and Jed's tiny student apartment. It was good food and good company and the limited space did not matter at all. Clare dressed up in her new jeans and walked into the apartment. We all were able to express our thoughts of thanks and to laugh and visit with each other. I have to warn you that with as much time as we have all spent in the hospital, there is more bathroom humor than regular. We were able to laugh and relax which was good for us all. Clare seemed to want the day to continue, and was reluctant to return to the hospital.

What's next? Theplan is that Clare could be released from the hospital this week and will move back to Meadow. She will continue to need 24 hour care. She is still an extreme fall risk, and will need assistance in moving from one room to another, as well as standing and sitting, bathing and dressing. She still has issues with short term memory, so she will not be able do anything unassisted for a while yet.

Emotionally Clare has experienced some real high and lows. She had a few days of break-through on her memory when she was asking everyone to quiz her…and amazing us with her recall both short term and long term. The last couple of days she has been in some sort of funk, and looks to others for the answers to questions. She has been down and somewhat withdrawn. I am not sure what is causing this. One day she did voice a concern to me about not being able to take care of her self.

As Clare returns to her home in Meadow, we will rely heavily on the assistance of friends in the Meadow and Fillmore area. I am hoping to meet the amazing people that have reached out with help and prayers to this young couple. If friends and family in northern Utah would like to see her before she moves back to Meadow…her release date could be as early as November 30.

At this Thanksgiving season, I am truly grateful that Clare and Kris' lives have been preserved. I do acknowledge a loving Heavenly Father who has provided many miracles for our family in the last three months. I have a hope that both Kris and Clare will recover completely--that is after all we can do. I have a faith that our Savior will help us through these hard things that are still ahead of us. He will be there for us as we allow him into our lives. He can heal all that is broken both in our bodies and in our hearts, and will give us the strength to endure.

God Bless you all! Please keep the prayers coming, specifically for Clare to be able to stay positive. I would so like to see her manifest her determined spirit.

Meta-memory

Last night was a very good night for Clare. When I arrived at the hospital, Bethany and Clare were doing crafts making a Thanksgiving Turkey centerpiece out in the group eating area. Clare traced her own hand on paper and we cut out the "tail feathers." During therapy Clare was very responsive and we had fun playing catch with a ball and kicking the ball.. she was trying to hit me in the head. She laughed many times. At dinner, another couple joined us. He was bucked off a horse and is working through short term memory loss much like Clare but not as severe as hers is. We had an interactive dinner and he asked Clare questions and she answered. It was probably the most natural I have seen Clare talk with people in a long time. After dinner we sat and talked for another 4 hours. We had the TV on and our conversations went in and out but not having a TV on creates a lot of empty pauses between times when we talk. Football was a good background distraction because neither of us were really interested in the game but it was good to watch a play and then talk and then watch a play. We also went through all of her pictures and talked over many many memories.

When Clare was getting back from a potty break I said to Clare, "You do remember, you just have a hard time remembering that you remember." Clare then said, "Is it my meta-memory?" I was dumbfounded! The first time I heard that term was earlier that day in speech therapy. Clare remembered this medical term that her speech therapist used to describe her trouble with short term memory. Clare became quite pleased with herself and that she remembered. Then she began saying, "I remember, I remember everything, ask me questions, I remember." The nurse was still in the room and I asked her all the standard questions that she gets mostly right. This time she got them all right and not just kind of answered them, but used very complete descriptions. "I am in Provo at the Utah Valley Regional Medical Center." "I was married at the River Oaks Golf Course." Stuff like that.

I was going to leave around 8:30pm, but Clare became alert and wanted her memory tested more. We sat and talked for another hour and a half. She asked me to write all of this in her memory book so she would remember tomorrow. We called Kris and Clare talked to him and excitedly told him she was remembering. It was a fun night. I hope she can have more and more good days like this. I believe part of the solution is getting her up and around and active for long periods of time. Tomorrow they are suppose to start letting her put weight on her right leg and we hope this added mobility will also improve her mental progress. It is too bad the weather has turned. Taking walks would probably do her a world of good. Maybe she can get a key to their church and walk circles with the sisters in her ward.

Kris was able to talk with the social worker and get a day pass for Clare on Thanksgiving. We will be going to Bethany and Jed's apartment just a couple of blocks from the hospital. It will be a small and crowded Thanksgiving, but we would not have it any other way. Clare is very excited to be able to leave the hospital for a day.

As I was getting ready to leave, I asked the PCT to come in. I told her Clare was in a talkative mood and to talk with her. The PCT said "Ok Clare tell me your life story." Clare said, "I don't know where to begin." I said, "Where were you born" and Clare said, "Bountiful." The PCT said "I was born in Kaysville," to which Clare said, "I have a friend from Kaysville. Do you know Austin _____?" and the assistant said he was a very good friend of hers and they went to high school together, he just got off his mission and how did Clare know him. They were talking about high school and boys when I left.

The timetable for Clare's next move may be November 30th, that will give them one week to work on walking with her (less Thanksgiving and Sunday.) The doctors and insurance can make a change to this at any time so it could be earlier than this or later if she is making progress and they think staying longer will make a significant difference. As we have learned from past experience, we should get at least a few hours notice. Kris has been working hard getting their home ready for Clare's return.

13 Weeks

It has been 13 weeks since Kris and Clare had the accident. We have come so far. Kris is back at work and continuing therapy for his shoulder. Clare continues to make improvement every day. We are very encouraged with her progress and know that her determined personality and a lot of therapy is what is going to make the difference.

I had a friend of mine tell me of a Nightline episode that I missed recently that talks about how the brain can mend and how the right kind of therapy can make it happen.

http://abcnews.go.com/watch/nightline/SH5584743/VD55153185/nightline-1114-gabby-giffords-speaks-for-first-time

Although Clare's brain injury is different from Senator Giffords, the difficult path back has similarities. She still needs all of your prayers and kind thoughts.

Eleven down one to go.

I just got back from spending the evening with Clare. When I got to the hospital, Nathan was there helping Clare eat dinner. She ate just about the best I have seen her eat. She also talked with us non-stop for several hours. Clare has a lot of questions which we did our best to answer. She wanted to know about her injuries, Kris's injuries, and kept asking if anyone had been to see her. I told her of the many people that had come to visit her over the last 13 weeks and some of the things they had said. Many of her memories that she can now recall are within the last week or two and she is trying to recreate the big memory gap that she now realizes she has. It bothers her. She is creating more and more bits and pieces of memory that is helping her know what is going on.

Today she answered correctly what city she was in. That question has frequently stumped her. Today she said, "I tell them I am in Fillmore but I am in Provo." Her fine motor skills are improving and I can make out many of the letters in her signature. Today is 11 weeks since her pelvis was set back into place. One more week and she will be allowed to put pressure on her right leg. I really want to see how much strength she has in her right side and what she can do once the restrictions are lifted.

We are hopeful that Clare has progressed enough that we can get a day pass to bring her home for Thanksgiving. If she is allowed to leave, we will have a small Thanksgiving dinner at home and then take her back to the hospital. We hope we can do this and it will also give us a real good idea of what to prepare for when she is eventually released from the hospital. We think she can do it, but we really don't know what her true condition is away from the structured world that she has lived in for so long.

CAPTAIN AMERICA

I have had several people mention that they know the blog is filtered and that we share mostly the positive things that are happening. This is very intentional. We look for and try to see every positive thing that happens and give thanks where it is due so more good things will come. That is what keeps us going. This experience has helped our family see the good and positive things that are all around us. We feel very blessed and having this positive attitude I believe has helped us increase our faith. Faith is a healing power and it is shared by people of all faiths. It would have been so easy to document all of the negative things . On any given day I could have made a list of 100 things that Clare or Kris could not do or things that are not working properly. Dwelling on things that are going wrong, and especially documenting negative things destroys faith. This is what I believe.


We have tried to put just enough reality into the blog so that people know where we are. Clare still has a long way to go. I re-read all of the entries and comments from the start of this blog today and it surprised me how far we have come. I have become so focused on today and where we are and need to go that I really forgot where we had been. I can tell you exactly how Clare’s therapy went last time I was with her or how she ate or how her cognitive functions are working. I have a clear understanding of exactly where we are today. I guess that the past is something that I do not want to think about right now. It still hurts.


We have chosen not to post pictures unless they are happy pictures that Clare would approve of. Yesterday for occupational therapy, they took Clare and Kris out to the movies! They saw Captain America in a movie theatre and Clare handled it pretty well. (Kris did too but we all knew he could handle it.) Here is a picture from their outing.

Clare still improves daily and we hope she can stay in this inpatient rehab center until she can walk on her own. We are probably within a couple of weeks of moving again. Clare has made so much progress with a structured therapy schedule 6 days a week. I do not want her to backslide and lose any ground because she does not qualify for a high level of care anymore. Our society seems to have a way of helping those that are in the bottom 5% to get them up to 6% so they can wash their hands of the problem. We saw this with our twins when they needed speech therapy. When they tested below the 5 percentile there were programs to help them. When they progressed into the bottom 10 percentile then they would not help them anymore. This was just when they needed it the most to keep their progress going. I fear this is going to happen to Clare. She has come so far and now that she will be allowed to stand and attempt to take a step, she may no longer qualify for inpatient therapy.

To end on a positive thought, Bethany handed Clare her guitar this week and Clare strummed a C cord. You can see it in the picture below. Everyday there is something really miraculous going on. It is so much fun to witness it.

Eat and Work Out

Clare continues to make small progress just because time keeps moving along. For her to make better progress, she needs to eat and to be more determined to work hard at therapy even if she doesn't feel like doing it. One thing Clare is battling right now is occasional apathy. It is easy for her to just shrug her shoulders and say, "I don't know" or "I don't remember" and not have to do any more work. Many things are confusing to her and she is living in a dream world as her level of consciousness rises.

Tonight at dinner she talked very well and she was very alert. I felt encouraged about how she looked. I then learned that she skipped therapy this afternoon because she didn't feel like going. Part of me wanted to say that she doesn't have the authority to refuse therapy. I wondered why they didn't make her go. Those of you that know Clare know that she can be very determined when she wants to be. You can't win an argument with a 3 year old even if you are correct. Arguing with a 21 year old that has the short term memory of a 3 year old is also difficult. Not impossible, but it is difficult.

Clare needs to eat more and to be more motivated to go to therapy. If these two things would happen consistently then great things would happen. Please keep her in your prayers.

Princess

I had a request to post a picture of Clare in her Halloween costume. She was a princess in her prom dress from high school and we did her makeup all glittery/silvery. She was pretty happy with the way it turned out.

I sure wish I would have gotten a better picture, but how was I to know she would want to shower and get in her pajamas 20 minutes after we finished getting her ready? No amount of bribing and trying to talk her into keeping it on until Kris and our family came could convince her...

Guess we'll have to do it again another time

  

Everyone is starting "Thankful" blogs for the month of November. Even though I won't keep up on it, I want to say that I am so thankful for the support of family and friends for Clare. I am thankful for her amazing recovery. I am thankful for her sense of humor that is coming back. I am thankful for her big smiles when loved ones come in the room. 

There are so many things I take for granted, but I count these blessings every day.

Life is but a dream.

Yesterday was not a particularly good day for Clare. She would not talk for much of the morning and looked sad. After Kris got with her she improved but overall she has a somber and quite attitude. Bethany and I got there just after dinner and Kris left to be with his family in Salt Lake.
It is common for people with brain injury, including strokes, to become fixated on subjects and to keep bringing them up over and over. We have been told to “re-direct” and get her on something different. Last night she kept saying, “Everything is a bad dream,” “Everything is a bad memory,” and we would re-direct and get her talking about something else. We tried to watch a movie to get her mind on something else, but she said she was confused and said , ”I want to talk.” Again we explained many things over and over for her. The accident, the hospital, her therapy, how Kris is, her home, the accident, home, therapy, her wedding, . . . we kept going over and over things and she kept saying they were all, “bad memories.” As I tried to put a spin on things and help her see that most of the things she was bringing up were good memories, she kept saying they were bad and also that everything is a “bad dream.” At one point she looked at me and gave me a look as if to say “you don’t understand” and she said again, “No, I want to talk.” It was a very polite way to tell me to be quiet and then I understood that she did not want to be re-directed and helped to find happy memories, she wanted to talk about her bad dreams.

I let her go on and finally realized what she was saying. She would say “In my dream, I could not walk and was standing between parallel bars.” “In my dream I was lying on a big table and would work out with a machine or weights or stretch.” She told me about all of the therapy she has been having. Then after telling me of each “bad dream” she would look at me and say, “that is a memory isn’t it.” And I would say, “Yes you are remembering and everything is kind of foggy isn’t it.” After doing this for quite some time I realized that her “Bad Dreams” are really foggy memories that feel to her as if they are dreams. As she was able to talk through all of the nurses and PCTs and therapists and visitors that have been in her “dreams,” I was able to tell her that she has memories and that they are not dreams. She seemed to understand more and more as she was able to talk and process what was happening. She just needed me to sit with her and let her talk. Last night I was more of a therapist that sat there and said, “and how does that make you feel?” and let her talk through all of her “bad dreams.” In reality a better description may be that she has foggy or poor memories, but “bad dream” are the words that most accurately describe them for her.

This is a change for Clare. She is creating more and more short-term memories and doing very well. The memories are not clear for her so she calls them bad memories or bad dreams.
Clare’s healing process is very much a roller coaster. Just because she was remembering last night does not mean that she will remember things today. The breakthrough that I experienced with her last night will probably need to be reenacted over and over again. This seems a lot like what we experience with Jonah, our 3 year old son having to remind him what day it is, to remind him of events, and to repeat ideas over and over. Only she is going through the process much faster than a three year old.

Golf Fundraiser Postponed

Due to snow and expected high temperature Saturday in Delta to be 39 degrees, the golf tournament fundraiser is postponed. Stay tuned for more information.

PM Addition: Tonight Clare was spunky and in a mood to kid and poke fun. Her voice had a little more inflection and sounded just a little less robotic. I also noticed dimples! It is these small things every day that make the trip to Utah County bearable. She ate better today than she has in the past so if she can keep that up the feeding tube will be able to come out. We don't know how long she can stay in this inpatient rehab facility, but we hope it can last until after she can put pressure on both legs which is about three weeks from now. But we really don't have a time table for when the next move will happen or where we will go from here.