How To Be A Grown Up: May 2017

Wednesday, May 31, 2017

Living Will and Medical Power of Attorney

Within the first 48 hours of being in the hospital, the doctors asked me if Richard had a living will and medical power of attorney. Thankfully we had both. The trick was to find it. When I finally went home for the first time, the list of things that I needed to do and files I needed to get seemed overwhelming. I did find them, but I recommend that you get both and know where they are. It was such a stressful time. Knowing where those things are is just one less thing to have to worry about.

I can't tell you how many times I used that medical power of attorney over the next couple of years. It was so easy to use! All I had to do was sign my name and write beside it "POA." Most people never asked for the documentation, but I had it in case I needed it. I kept it on my iPad in a dropbox folder.

As for a living will, many times I have heard people talk as if you know what the outcome will be when you are making life decisions. The truth is, you don't. When you are making major life decisions on whether a family member will receive medical care or not, you have no idea how it will turn out if you decide to permit medical care. They could end up in a vegative state or they could lead a fairly normal life, and it could be anywhere in between. I really don't know how people do it if they don't make it a matter of prayer. I believe the the Lord hears and answers my prayers. It was through the answers I received that I was able to make the decisions that I made. I hope that you don't have to be put in the position to make such decisons, but if you are, I hope that you are able to pray about it and receive answers. It would be very difficult to do that all of a sudden if prayer were not an everyday part of your life. Fortunately, it is a part of ours, and has been since we were married. Therefore, it was not strange or uncomfortable for me to go to the Lord in prayer about the situation that I was in. However, I do have to admit that my prayers were more intense during this time. They were longer. They were more heartfelt, and many times they were used in conjunction with fasting. I have seen miracles happen when I have fasted multiple times in my life, so I know that it is something I can rely on. If it is not so for you, and you would like to know how to get there. let me know. I will be happy to help you on your spiritual journey the best that I can.

In any case, see an attorney. Get a medical power of attorney and a living will. Hopefully you will not need it, but if you do, you will have it.

Compartment syndrome (Graphic picture warning!)

At the end of February, I was heading back to Richard's room when two of his doctors stopped me in the hall. They explained what had happened that day in surgery. They talked briefly about damage done to his hands, but really focused on his arm. While doing surgery that day they found that the muscle had "started to turn grey," which means it is dying. They started to remove dead muscle but explained that they would keep doing so every few days until it stopped dying. They put in antibacterial beads to help avoid infection. They explained that over time, his arm would just be skin and bones. They also explained that although they were not there when Richard was brought in, they had talked to those who were. They said that none of them would have given two nickels for his survival even to that point. When they talked to me, they were not sure that he was going to make it. I have to assume that it is because they didn't think he would make it that they made some of the decisions that they made.

Since then, we have started to understand what would cause such deterioration of muscle. As you can see from the pictures in the first blog post about the accident, Richard was VERY swollen. When a body swells to the point that they cannot swell anymore, the body cannot deliver blood to the affected parts so the muscle begins to die. The fact that the crushing trauma to that area was of such a force was also a factor. If the skin is split, compartment syndrome might not occur. Therefore, if you or your loved one is swollen to the point that the pictures show here, and there is significant injury to an arm or leg especially, talk to the doctor and ask if compartment syndrome is a possibility. If it is, have the split the skin. Do this as soon as possible!

This picture was taken during a wound vac change while Richard was at Kindred Hospital. The white exposed is the bone.

I like to look at Richard's hand in his picture because it was normal looking here. It doesn't look like this anymore.

The problems with this arm have gone on longer than any of the other injuries that he has. We have been to Mayo Clinic twice for surgeries on this arm. He is missing 4.5 inches of ulna and eventually, they connected the ulna to the radius. I will attach x-rays.
It takes two bones in your arm in order to flip your arm over so he no longer is able to move the arm in that way. For awhile, his fingers were blue, but after they shortened the arm slightly at Mayo clinic, it seemed to solve that issue.
He has been told by medical professionals to amputate the arm. He refuses to do so. He has some feeling in his hand, and he does use it for some things, although the only movement that it has is produced by muscles in his shoulder and upper arm.
We were unaware that this was even a possibility, and in fact I was told early on that the arm was the least of his worries. It has not turned out that way.
What have I learned from this experience? First, doctors don't always know what the worst injury will be long term. Second, doctors made decisions based on what they think will happen, and in our case, they thought that he would die, so why bother? (Is that blunt enough?) Third, if compartment syndrome is even a possibility, ask the doctor, nurse, or both about splitting the skin to relieve the pressure. Doing this could save you many years of surgeries. I would estimate that Richard has had 20-25 surgeries just on that arm alone. I have also learned that you have to stand up and advocate for your family member. They cannot advocate for themselves, and to the doctor, this is just a job. He or she will not have to live with the decisions that they make every day for the rest of their lives. You will. Be firm. Be assertive. It could make all the difference. I wish I would have known.

Arm the day of the accident

Arm on 2/9/08

Arm on 2/27/08 You can see the antibacterial beads that they placed in there.

Arm on 4/3/08

After the ulna had been cut out 4.5 inches 1/5/09

Left arm after a medical professional broke it during an exam.

After the first surgery at Mayo clinic where the ulna was attached to the radius. This never healed completely and still to this day is a 'non-union." This is the reason that Richard wears a brace. It is to protect this arm from further damage.

His arm today as it usually is, in his protective brace.

and without the brace.

A better view of his left hand. This is the position it is always in. It does not move.

Tuesday, May 30, 2017

Counting your blessings

As I sat in trauma ICU for months at a time, I saw a lot of people come in and out. There were people who had no one who cared if they lived or died. There were people who had been shot and stabbed. I met a guy in the surgical waiting room with a 49 year old wife having breast cancer surgery. She has an 11 year old daughter. There were many people who had less injuries than Richard, but they included spinal cord injuries. That is one area (about the only one) that had no injuries on Richard's body. Such a miracle! In addition, he could have lost 100% of his sight, but he only lost 75% and that makes all the difference! That is a miracle as well!
We have had people travel from all over the country to come and see Rich while he was in various care centers. We had people come and visit regularly from our home town, which was 100 miles away. We had rides provided to visit their dad to our children.
We attended church in Albuquerque and so many people told us that they were praying for "Brother Elliott", even children. We had the sacrament brought to us in the hospital many times.
Our children were provided homes to spend the night in, meals to eat, tutoring, rides to school, rides to Albuquerque, etc. Wendy even got help buying and selling a car!
Richard was given various foods, a prayer shawl that he still has (9 years later), stuffed animals, audio books, big signs, lots and lots of cards, etc. I could go on....
I was given beds to sleep in, meals in people's homes, magazines, snack food, gift certificates to eating places, a hug in the Temple by a stranger (who knew who I was as soon as I said I was Sister Elliott), the list goes on. One family, that we had never met, let us use their home for the enitre summer. They were not living in it because they had two homes so they let us use one, no charge. One woman let us stay in a bedroom at her home and I had nver met her either!
Richard had priesthood blessings from many, many people. His name was put on the prayer roll of more temples than I could imagine! People who had never fasted before wanted to know how to do so so that they could participate in our family fast.
My visiting teacher organized meals to be brought to us after we were home from both people at church and at work, which worked out quite well because she worked at my school as well!
I had a nurse come to our home after Richard was home to check on his ankle to see if she thought it was infected. No charge.
I had people come to my home to help with computers that were not working right, installing new plumbing, and one person would come and sit at my home while I had workers there doing things because I didn't want them to have free reign of my house while they did work for me.
In White Rock there is a white rock at the entrance to town that people write messages on. One family wrote a welcome home message to Richard when he came home one of this times that he was released. (He would come home for a time and end up back because of infections, etc.)
I got calls and emails from people that I hadn't heard from or talked to in years, and that was long before we were connected on Facebook!
One friend took a day off of work so that the family could be in ICU while she sat out with our grandson who was just learning to walk.
Another friend came to visit weekly, driving the 100 miles to just sit there with us and keep us company.
There were so many ways that we were blessed, and as we look back on others who might not have had such kindness given to them, we are humbled that people were so kind to us.
Whenever you are going through something that is so devestating and takes over your life in every way, every kindness that is given to you is so appreciated. If you are going through something hard, look around. There are many people who have problems that you would not ever want to have, and there are always people there to help lighten the load. I thank God for those people! I pray for those who are going through things that are hard. The truth is, life is hard. We have to be there to help each other, and I saw that in a way that I can't even begin to explain!

The first orthopedic surgery

On February 19, 2008 this is what I wrote in my journal:

Surgery was done on all of his extremities. He went in for surgery at 1:10 pm and they didn’t bring him out until 8:45. When they did bring him out, he had had a bad reaction to coming off the meds from surgery and he was shaking violently. His eyes looked terrible. To be honest. he looked as bad, in a different way, than he did when he came in. The doctor said that he hasn’t seen bones that bad in a very long time. He said it was like a giant jigsaw puzzle to put all the bones back together. They were shattered in hundreds of different pieces. They completed everything on his legs. This included the left femur and tibia (right above and below the left knew.); pins in the left foot that i didn’t know was damaged; the cut tendon above the right knee; and reconstructing the right ankle and foot. They will have to go back in in about 3 months to take the pins out of the left foot. The doctor said that he wouldn’t be able to put weight on them for at least four months, doctor also said that loosing the foot is still not outside the realm of possibility. Time will tell. I thanked him but he said not to thank him yet. He looks better this morning and besides having the tube in his mouth and being unable to talk, he seems better, weak, but better. He is very thirsty, not having anything to drink in 13 days. They keep telling him he will get something but we can tell he is getting impatient.

I got a lot of paperwork organized yesterday while he was in surgery. That made me feel better. There is so much to do. I just try to concentrate on what I need to concentrate on at the time.

Every day is different. One day it’s his eye, another, it’s the legs, another it’s the lungs, etc. It’s a good thing that we don’t have to handle it all at once.

What I rememeber now about this day is how long the surgery was and how the reaction that he had afterward was so terrifying that all I wanted to do was leave. It was too hard to watch. Keep in mind that his was 13 days after the accident, and the first time that they did any orthopedic surgery. This is also the first time that what he said was really relevant to the situation. Otherwise he said he was a daffodil or that he needed X or Y, using the letters in the place of whatever it was that he really did need, so we had no idea what he was talking about. He spoke of "suck bubbles" and he also had some pretty severe paranoia. He wanted to get up and walk out of the hospital, and although I explained that he couldn't do that as he had no working legs, he was sure that was the only way for him to remain safe. At one point, he also said something like "It doesn't look very good for me. I hope you are going to be okay." That was pretty hard to hear from him. Still, as I write it, it is emotional for me. In any case, it was at this point, basically two weeks after the accident that he started talking in a normal kind of conversational way. Interestingly enough, this is a period of time that he still has no memory of. His first memories were after he left ICU, which was a few weeks later than this.

A review of injuries

At this point, I think it would be helpful to review the injuries that Richard had because of the accident. We did not know about all of them right away, and some took a month or so to surface.

Loss of sight in the left eye caused by compartment syndrome which killed the optical nerve. (There will be a post about this later.)
Right hand broken in two places
Left leg broken all around the knee. The femur above the knee and both bones in the calf as well. The knee was completely open and has had to be reconstructed.
Trumatic brain injury with pretty significant frontal lobe damage
right ankle was almost completely taken off. The doctor told me the day of the accident that he was going to remove it. After talking to me, he decided to try to save it. He still has it, but it has been a long road with MRSA infections, etc. He wears an orthotic to support the ankle, and eventually, it will have to be fused.
left arm was broken through below the elbow. He sustained a very large impact to that arm that has killed the muscle tissue. There will be a post just on this arm in the next few posts.
damage to both lungs, which collapsed during the impact.
damage to the diaphragm, which was torn by the air escaping form the lungs.
Multiple ribs were broken, which caused the damage to the lungs.

Monday, May 29, 2017

Social Security Disability

About two months after the accident, I got an appointment at the Social Security office. I had done my research and had all the needed documentation. This is copied directly from the Social Security Administration on what is needed:

The information we need includes:

Your Social Security number;
Your birth or baptismal certi cate;
Names, addresses, and phone numbers of the doctors, caseworkers, hospitals, and clinics that took care of you, and dates of your visits;
Names and dosage of all the medicine you take;
Medical records from your doctors, therapists, hospitals, clinics, and caseworkers that you already have in your possession;
Laboratory and test results;
A summary of where you worked and the kind of work you did; and
A copy of your most recent W-2 Form (Wage and Tax Statement) or, if you’re self-employed, your federal tax returns for the past year.
In addition to the basic application for disability bene ts, you’ll also need to ll out other forms. One form collects information about your medical condition and how it affects your ability to work. Other forms give doctors, hospitals, and other health care professionals who have treated you, permission to send us information about your medical condition.

Danielle went with me to the SS office. I had an appointment. The worker was incredibly rude to me and made me feel that I was trying to defraud the United States Government. After I showed her all the documentation, she actually apologized to me about her attitude. I know that there are a lot of people out there who would seek to defraud the government, but it is frustrating when you are not one of them, and you are accused of being one.

Our son, who was in high school was also eligible to get social security benefits because his father was disabled. We did not take that money, our son got it and put it into savings for his college education if any was left for his everyday expenses, which I was not at home to provide.
Richard's long term disability was figured by the amount of his social security benefit, so his disability was reduced by the same amount that Michael got in benefits from SS. When Richard was home and able to call the insurance company, he did. They told him that he could take that money from Michael and use it for family needs. Richard explained that he was not going to 'steal' from his children, so that would not be happening.
I was also eligible for SS benefits for having a spouse that was disabled and having a child under the age of 18 simultaneously. However, there is a cap placed on how much a family could get in total, and if I took that money, it would reduce the amounts that Richard and Michael received, so I never persued it. Richard had a good paying job before the accident, he was an electrical engineer, so we maxed out the cap.
After Michael had graduated from high school, he no longer received that social security check. It lasts until the child is 18 or graduates from high school, whichever is longer.
I know that some people hire an attorney in order to get Social Security disability. I don't know whether it is good or bad, but Richard's case must have been pretty clear because he was approved the first time he applied.

Sunday, May 28, 2017

Family Medical Leave and short term disability insurance

The Family Medical Leave Act was made law in 1993. It is to basically require your employer to hold your job for you if you need to take leave up to 12 weeks for the health of yourself, your spouse, or a natural or adopted child. My principal suggested that I apply for it the day of Richard's accident. In order to do that, I needed to contact my school district office and ask for the apporopriate paperwork. My paperwork asked for the health condition that prompted the request and asked for a medical release so that they could verify that the issue was a reality. I also had to have a statement from an attending physician. This was difficult to get because he was under the care of a trauma doctor in ICU that we really didn't see too much. I ended up giving it to the nurse and she saw that it was filled out properly and returned to me.
The hardest part for me was having to take time without pay. It didn't take me long to run out of sick and vacation days so every day I took off, I didn't get paid for. Richard's hospital was 100 miles from our house, and I had two children living at home. We were so fortunate to have a place to stay in Albuquerque so we didn't have to get a hotel, but there were still meals to buy because we didn't have a kitchen to really cook in. Then there were the trips back and forth between home and the hospital. At work they had a sick bank that you could use other people's sick days if you needed more than you had. It didn't apply to me because it had to be for personal health issues. Since it was Richard's health issues, they wouldn't allow the sick bank days to work. I even had friends that wanted to donate days that they had accumulated to me, but that wasn't allowed either. It was frustrating!
I also needed to fill out similar paperwork for Richard. I was not of the presence of mind to think about this, but fortunately for me, his HR department contacted me to initiate the paperwork in his behalf. I had a medical power of attorney so I was able to sign paperwork for Richard, which I did fairly often during the first couple of years. I also met with his HR division to go over benefits that applied under the conditions.
Richard always felt a need to be "over insured." If there was an optional insurance at work, he would get it. For that reason, he was covered for "short term" disability. We filled out the appropriate paperwork for that insurance while I visited with the HR representative. Richard started receiving checks from this disability after a few weeks. He was still employed at the time and we decided (HR and myself) that he would use his sick leave and vacation days first so that his paychecks would keep coming, at least until that was used up.
Here is the thing about short term disability. They called me one day to tell me that they would be overpaying me through that insurance and that I needed to be aware that I would need to pay a certain time period back to them. I said that that was fine, but I did not expect what actually happened. When we received the check, there were taxes and government fees taken out, just like on a paycheck, however, when I paid it back I had to pay the GROSS back. I paid more back than the original check I received. In reality, I would have been better off it I had never received that check! They didn't tell me that part, and they didn't give me option of not taking the money for that time period. I am not sure why this is the case, or was the case under our insurance, but be mindful of this, especially if they call and say they are going to over pay you and you will just need to return that extra money.
In the end, I went back to work part-time before the 12 weeks was over (for my sanity more than anything else) and full-time toward the end of the school year. Richard never went back to work. He was able to use all of his sick leave and vacation pay and then fall under short term disability. He also had a long-term disability policy, which did not kick in until after the short term disability had ended, as well as his employment. He was not terminated though until after his leave was used up and then the 12 weeks FMLA had been used up. By that time, we were in August of 2008 so it took six months to get to that point.
If you have any questions, let me know. I will answer them to the best of my ability.
Next time I will discuss the Social Security disability process.

Saturday, May 27, 2017

Richard's accident

It has recently occurred to me that there may be people out there going through things that I have already gone through that might need some help navigating those difficult situations. It is for that reason that I feel that writing a blog about our experiences would be helpful. I have written previous blog posts about other things, but for awhile anyway, I think I will concentrate on how to help people who are going through a trauma (in our case, a grave automobile accident), and how to nagivate through all the decisions, insurance problems, legal situations, medical complexities, etc.

Today I will begin with the background, which started on February 6, 2008. The morning of February 6, 2008, I attempted to drive my son to early morning seminary. It was 6 degrees that morning according to the thermometer on my car. We later found out it was actually colder than that according to the official readings. When we got to the high school, we found that seminary had been cancelled because of a delay in the start of the school day due to a teacher work day. I worked at the elementary school close to our home and I didn’t know of any delay, so I was surprised. My son and I drove back home. It is about 10 miles between home and the high school. The roads looked icy to me and I drove very slowly and carefully, especially around the curves on state road 402 between Los Alamos and White Rock. When I got home, Richard was just waking up. I told him that it was very cold out and the roads were dangerous. I told him he should drive carefully on his way to work. His life insurance payment had come due and so we were talking about that. He said that he wanted to cancel the policy. He had just turned 50 years old and the premiums had more than doubled. I was not very happy with him for considering doing that, as it would not hurt him, but doing so could effect me dramatically. Not long after, I went to work. Michael stayed home and was going to take the school bus up to school later that morning.

The day at work proceeded normally until about 9:15. I was teaching a gifted pull-put program and had a group of students that were working fairly independently on a major project that they were doing. I was looking over their shoulders of offer help and suggestions as needed. My principal and office secretary appeared at my door. I was in a classroom off the library, so the door was open at the time. They asked that I step outside my classroom for a moment. As I did so, I saw a police officer standing there in full uniform. My stomach dropped. I knew something was terribly wrong. The police officer told me that my husband had been in an accident on the way to work. He said “It doesn’t look good.” At that time a million thoughts were going through my mind. I am not one to over-react, so while I may have appeared fairly calm, I was far from it. I waited for more information. The police officer told me very little except that the two cars involved didn’t look like they were involved in the same accident. The other car was not damaged that much at all. Rich’s was demolished. I don’t think he used that word, but that is the impression that I got. Richard was at Los Alamos Medical Center and I needed to to get there ASAP because he was going to be life-flighted to UNM Hospital in Albuquerque. My daughter happened to be subbing at my school that day so I asked that she be notified. We were driven by my principal to the hospital and she stayed with us there while we waited. I called my home teacher, but he did not answer the phone because he was working at the temple that day. I tried to call the bishop but couldn’t get through so I called the counselor and he immediately got through to my bishop. By the time I got to the hospital, my bishop was there. My principal called the high school and got my son out to class to come to the hospital as well. We later found out that the message delivered to the high school was, “Michael needs to go the hospital to say good-bye to his dad.” Richard had been suffering with depression for awhile and so I told the bishop that if it took him fighting for his life to make it, he wasn't going to live. My bishop looked at me and said, "Don't you think you are worth living for?" I didn't know if Richard would see it that way at all, but at that point, all I could do was to take one moment at a time, and that is exactly what I tried to do.

A member of my ward drove me to Albuquerque. My bishop called Jimmie and Teresa, friends who had moved there a few years previously from White Rock, where we lived,

and asked if they could assist with a priesthood blessing and if they could provide a place for our family to stay. They very generously agreed to help in every way possible. Their help was absolutely invaluable to me over the next few months. Jimmie was at the hospital when I arrived. He had not yet given the blessing as he had not yet been able to see Richard. When he did, he didn't recognize him. He was accompanied by another member of his ward, who we did not know. Later that evening, another couple who were previously in our ward in LA and were currently living in Albuquerque came over and gave blessings to myself, my daughter Wendy, and my son Michael. I really don't remember too much about those blessings, but I do remember Wendy being told that this should not interupt her schooling, and that she should return to college as scheduled when the next semester began. It was for that reason that we never considered her staying home.

I called my daugher Danielle, who lived in Las Vegas and she immediately booked a flight for herself and her son Aiden, who was just about a year old. I also called my in-laws, and began to drive there in the next 24 hours.

Richard’s injuries were explained to me briefly before going to Albuquerque. I was told that he needed to have chest tubes put in while in Los Alamos so that he would survive life flight to UNM. The surgeons in LA did that. Then when I arrived at UNM, a doctor came and told me that his foot had been basically amputated and they were going to remove it. I told the doctor that Richard would not want to live if he woke up and his foot was gone. The doctor said he would try to save it. He had major swelling in the entire body. He had a head injury. His lungs popped by a broken rib. He broke through both bones in the left forearm. He had fractures in the bones in the right hand. He had compound fractures in his ribs, breaking all of them on the left side, doing damage to the diaphragm as well. Many on the right side were also broken. He had compound (more than one break per bone) and open (broken bones sticking out through the skin) in the legs. He was not expected to survive. The orthopedic doctors would have liked to have operated on his arm and legs but they could not get permission from the Trauma ICU doctors. He needed to be stabilized before that could be done.

I had a few things to wear that I threw into a suitcase and I stayed at Jimmie and Teresa's house. They fed all of us breakfast every morning, gave us emotional support, visited Richard in the hospital, and honestly, I don't know what I would have done without them. I didn't really sleep well the first night, and to be honest, it took me months to be able to sleep normally.

It is my hope that I will be able to share some of the things that we had to face during those difficult months so that someone, maybe many someones will be able to deal with their situations more effectively than I did. I didn't have any 'professional' explain any of the things that I would have to deal with, and I certainly didn't know anyone with any experience that might know what I should do. My boss told me that first day that I would need to file for Family Medical Leave, so I did that. Maybe my next post will deal with that issue.