One of the certainties in life is that at some point someone close to us will have the misfortune of a long hospital stay.  My husband spent a grand total of 111 days in the hospital, of which I was with him all but one day.  Over the course of his stay, I came to appreciate some things that helped him as well as me navigate through this difficult chapter in our lives.  I would like to pass on some tips that worked for us, and hopefully you will find this helpful for you and your loved ones as well.

•  Keep a journal.  The day after my husband's accident, I quickly realized that there was so much information that was being relayed that I needed to keep notes.  I was so glad I did because that journal (I ended up writing 114 pages) was invaluable and is something I continually reference back to, whether it’s talking with his current physicians and therapists, or gathering information for insurance companies, etc.  Important things to document are the names of the physicians and nurses who oversee the patient’s care, milestones, important facts, and all medications.  If you aren't sure..ASK! I also documented my thoughts and sentiments, and it's been good to look back to see how far I've come both mentally and emotionally.

• Compliment! If a physician or nurse does a superb job, or does something extra special, be sure to let them know how much you appreciate it. The mileage you will get out of doing this small gesture will pay big dividends. I guarantee you, your loved-one will get treated extra special going forward. Four weeks after my husband's accident, I walked into his room on a Saturday morning at Santa Clara Valley Medical Center, and a nurse was washing his hair with water into a garbage bag that she hooked behind his head.  This was the first time water touched his hair in 4 weeks.  Up until this time, they were putting dry shampoo into his hair. If you know anything about dry shampoo, it doesn't really get your hair clean and is no substitute for water. The nurse didn't have to do this, and this wasn't protocol, but she cared enough to get the sand out of his hair that had been in there since his accident in Maui. We both got teary when I thanked her. She showed so much compassion, but she expressed that she rarely got complimented for the special things she did for patients.  For the next 6 weeks, while Vaughn was on her unit, she protected him and went out of her way to ensure he had the best care.

•  Conversely, be vigilant. If ever you feel your loved-one isn't getting the proper care, or is threatened at any point, speak to someone in charge.  It doesn't have to be confrontational, but sometimes informing a charge nurse can easily rectify the situation.  Fortunately this only happened twice with Vaughn during his hospital stay, and the situation was solved in a civil manner. Someone has to be the eyes and ears for their loved ones; an advocate for the patient, especially when the patient is incapacitated and can't speak for themselves..

• Bring photos from home and set them up around the room. Your loved-one longs to be home and photos can go a long way.  My friend Kami sent a collage of some great pictures from some family vacations we took together.  We taped it to the wall along with our family pictures. If your friend is in the hospital, sending pictures is a great, inexpensive, and wonderful way to express your well-wishes.  A picture video frame with loaded pictures is also a great idea and can give the patients something to look at, and get their mind off of their situation.

• Send cards.  So many great friends and family members were so thoughtful to send cards.  Vaughn looked forward to me reading the cards that he received each day.  Every card we got we put up onto the window sill for him to look at. In this day and age of electronics, a hand-written note is something that isn't done enough, and can be invaluable to a sick or injured patient. It is something that can be treasured forever.  

• Send your well wishes without an expectation for a reply.  I always appreciated when someone would text/email/send card with a message that said something like, “No need to reply, but just wanted to let you know that we were thinking of you, and if there is anything you need please let us know.”  All messages were very much appreciated, and the outpouring of love was overwhelming. We understood that everyone wanted to know how Vaughn was doing. If you are the loved-one in this situation, pick a close friend to relay updates to and then let that person send a group message to all inquiries.  It really frees up some valuable time and takes a little stress off of the family member if you keep the questions that require a response to a minimum.  I tried to respond to everyone,so if I didn't get back to you, please know it wasn't intentional. 

• Get some sleep and make sure to exercise.  If your family member is in the hospital, and you are bed-side most of the day, make sure you take care of yourself.  Take a walk, get fresh air, and make sure to get some sleep. I had nurses encouraging me to do this all of the time, and I probably didn't do it enough. You can't be any good to the patient if you aren't good to yourself.

• If you are visiting a friend in the hospital, try to keep the visits brief unless the patient asks for you to stay longer.  Vaughn slept a lot, and he never wanted to be rude, but I know some days he needed that extra sleep.  These patients have been through a lot, and they are exhausted. Also, it's better to bring balloons than flowers, at least if you are on a spinal cord unit.  Because so many people are on ventilators, they won't allow flowers in the room, for they fear that the seeds from the flowers may dangerously get into the ventilator hoses.

• Start a meal campaign for the family and the patient upon return from the hospital.  Lord knows no one has the time or energy to cook and a month's worth of dinners and people signed up to pick up my daughter from school was the greatest gift my community gave to me and my family.  My dear friend Kim coordinated the  "Lotsa Helping Hands" website that is designed to help family members in need. We were so grateful for all that she did in setting this up. I also had some sweet friends send me gift cards for restaurants, which also was a blessing as it allowed us one less meal to think of, and gave us the opportunity to get out of the house.  I even had a family (thanks Mike & Christine) send some gas cards, which was so appreciated because I was driving back and forth to San Jose at a time when the prices of gas were at its highest.

• So many people want to help out, but they aren't sure how. I always got asked, “What can I do to help out?” Most of the time I said, “Thank you, I'm good." because I always felt that the things I needed would be hard to ask for. The best thing you can do for your friend-in-need is to take over a task that you know would lighten the load. Don't ask or if you do, don't involve the friend with more questions and details, because then it may overwhelm the person you are trying to help.  For example: surprise your friend; it will have enormous impact . Two weeks after Vaughn's accident I finally came back to the house.  When I walked through the door I was  pleasantly surprised... My friend's Caren and Karen cleaned my entire house, folded my children's laundry, and scattered the house with fresh flowers.  I had no idea they did this and if they would have asked, I would have said, "Thanks, I'm good." You can't imagine how this made me feel during a time when I wasn't walking through that door with Vaughn.  It was so incredibly generous and special. Thank you so much friends!

• Another example...I wrote on Facebook that I had gophers and that they were back with a  vengeance. Critter tasks had always been Vaughn's project. I asked my fellow FBers what I was supposed to do. My friend Mike didn't say anything.  He just came over, didn't bother me, didn't ask for any thing, brought his gopher box of goodies, and just dealt with those critters all on his own. It was one less thing for me to think of, and the style in which he did it was full of class. Thanks Mike!  

There were so many other examples of kind gestures and good will. We are so incredibly blessed to be a part of such a wonderful and caring community.  The biggest thing you can do for your friend and your friend's family during a devastating time in their life, is to be there in body and in spirit.  Everyone wants to be loved and accepted, not abandoned and neglected.  It takes a village, and we are so proud that the village we are a part of, has accepted us with open arms.

Tomorrow will mark another milestone in a long list of achievements that we have been able to conquer in the last 22 months.  We will board an airplane that will take us to Las Vegas.  It has been the one thing I have craved to do since the accident, and is also the thing I've missed the most.  Honestly, I never thought this day would come.

 Traveling represents freedom from the day-to-day routine of life. For me, it has always been exciting, and is the candy that feeds my brain with fresh images, new smells, and stimulating thoughts.  

As the reality of our situation set in over a year ago, the thing that made me the saddest was thinking I might not ever be able to travel far away ever again.  Seeing Facebook pictures of other’s vacations was extremely painful. I was envious and jealous to see how much fun I was missing out on.  

In the beginning stages after my husband was discharged from the hospital, we couldn't even leave the house. He had an electric wheelchair, but no van to transport him in.  The only time he left the house was if he had a doctor’s appointment. We called the “County Connection”-the van service for people with disabilities-and they would pick us up and drop us off.  Nothing was more humbling than the first day we rode in that van.

 We tried several times to buy a van of our own, but each time there was something that was keeping us from pulling the trigger—in most instances, the height inside the vans that we were looking at were too short to accommodate my husband in his chair. The vans that did accommodate him were so big that it would have looked like we were going camping anytime we wanted to use the vehicle.  Although we did a lot of searching, it just never worked out.   

As the days went on, we were feeling more trapped, and we needed to find a way to allow us some level of enjoyment outside the home.  We ordered a transport chair that you could collapse and throw into the trunk. One day my daughter and I decided to go for it- we were going to get my husband in the car by ourselves.  The occupational therapists taught us the technique for car transfers, but we had never actually gone through the motions by ourselves.   At this point in the recovery my husband wasn't able to give us any assistance whatsoever.  He couldn't stand, or lean over, or move any part of his body necessary to help us in any meaningful way.  We slid a transfer board under him, leaned him over, and with one person on the driver-side, were able to pull him into the car.  It wasn't pretty, and we fumbled a bit, but we got the job done!

By mid-January of 2013, the kids were back in school and I couldn't rely on them to help me with the car transfers, so I decided I needed to make a transfer all by myself.  It took a lot of strength and might. I don't know how I did it, but I did, and after I did it the first time, I felt so liberated!  We finally had some level of freedom, albeit a small amount, but freedom nonetheless.  

Slowly but surely, Vaughn's movement's and strength were coming back to the point where he was helping on our car and bed transfers.  This past Christmas, he hit yet another milestone: he started to bear weight on his legs and get into the car without a transfer board.

When I look back, and anticipate this trip we have been thinking about for so long, I can truly say that we have come a long way!  Now it's time for us to finally board that plane.  I imagine we may run into a bump or two, but when you put your mind to it, anything is possible!! 

Less than two months after the accident, my family was separated from each other, each of us in different locations: my husband was in the hospital, my son was in Southern California to start his first year in college, my daughter rotated her time between home and the comfort & care of four wonderful families, and the dog stayed with a dear friend of ours.
 
As for me, I was the nomad, perpetually living out of a suitcase. I spent my days at the hospital, and at night I slept at either my parent's home or any one of my siblings-all who lived within 20 minutes of the hospital that is located in the heart of Silicon Valley.  Three nights a week I would drive back home, a two or three hour drive from the hospital, so that I could see my daughter and pick up mail. 

The pressures of managing the home; traveling back-and-forth from hospital to home or home to hospital; battling with our insurance company; filling out stacks of paperwork; fielding the hundreds of emails and texts from well-wishers; being patient advocate, missing my kids, and lacking any normalcy in my life was starting to affect me.  I felt like I was the captain of a sinking ship loaded with precious cargo, left to steer and bail water at the same time. 

I had kept up a strong front for everyone: my parents, my friends, my coworkers, and most especially my husband. The only two people who saw a glimpse of what I was feeling were my children.  I was taught that a parent should be strong for their children, that we shouldn't burden them with our problems. Yet, I felt I could expose my raw emotion to the kids.  At times, when I felt weak and needed to curl up on the floor to cry, they gave me my space and didn't judge. For, in addition to the bond as parent-child, we now were linked together by an unimaginable event.  They were the two people who truly understood what I was going through, because they were going through it too. 

I tried to shield my husband from the circus that was going on behind the scene. He had enough to deal with and I didn't want to expose him to all of the challenges I was facing on a daily basis. I tried to be positive and the face of hope for him, but some days were a struggle.

  One day, as I sat next to him on the side of his bed, he could see the sadness etched behind my smiles, and the weight of the world I carried on my shoulders. I couldn't fool him, for he is very perceptive and knows me like the back of his hand.  He looked at me with such softness and said,

    "Swede, I know you are doing a lot, and I wish I could help you. I know I can’t move my arms, but I still have a head. I can think, I have ideas, I can help you; just tell me what I can do for you. I’m here for you.”

   The floodgates opened and I cried, and cried.  All of the built-up stress, the pressure, the sadness, the despair came pouring out. As I cried, I laid my head on his chest and could feel the warmth from his body, and the softness of his skin. At that moment, I could feel his strength.  I found comfort knowing he was still my Swede-the person who could always soothe my fears and warm my soul. Although he wasn't able to touch me, or hold me, or hug me, I still could feel his love, and his desire to make me feel better.

    “Don’t worry Swede. We may not have all the answers, but we will find a way.” he whispered as my tears started to dry up. For the first time since his accident I felt an incredible sense of relief.

Ever since the day I broke down in the hospital, the phrase: “We will find a way” ( the subtitle to my blog) has become our motto for how we deal with daily challenges. It’s a powerful phrase that eases stress at a time when you only want answers.  You may not always have the answers, but just knowing that a solution lies around the corner and is in reach, is enough to lighten the stress from not knowing.

Fortunately, with any obstacle or challenge that litters our path, we find a way to overcome. In some cases the answers come from asking others.  At other times it comes from trial and error.  What’s important is that we work it out, and give it our best. We've never folded. We are still in the game, and it is our hope and plan that one day we will conquer.