This page holds the collected writings from Linda and the rest of us from Joe’s 16 month ordeal and our memories since December 2010.
9/28/2012 – Linda
I went to the doctor the other day with some back pain. The doctor asked me if I slept well at night. I told him I had trouble sleeping mainly because of the death of my husband. He looked at me and asked how long ago my husband had died. I told him December of 2010 and he said that his death should not be bothering me this long. I was dumbfounded that he would say this to me. I have another friend whose husband died in 2008 and as of last year was still seeing a grief counselor. I didn’t go that route. I always thought I could handle whatever came my way after Joe’s death. The day after Joe’s death his doctor called me to be sure I was okay. Told him I was fine but he cautioned me that bad feelings might come into play and to take care. It bothered me that someone could tell me to shape up and move on that has never been through what my husband and I went through.
Sometimes I am not the quickest person. The more I think about what he said the more upset I get. Of course when he said it to me I sat there and cried. What a wimp I was! I fired many doctors while Joe was in hospitals, nursing homes, and rehab facilities. I am firing this doctor too. I am fed up with doctors that have no compassion. That used to be part of their job. Now the system is so impersonal. Joe had many doctors that did not care. They did their job, in some cases, and collected a paycheck. Healthcare in America is now more obviously about money than it ever has been before. Sure medical school is expensive and malpractice insurance is expensive but all of these externalities have depersonalized healthcare. The reassuring vision of the healthcare system that we get from watching television programs, where the diagnosis and treatment are neatly wrapped up in 30 minutes is a long way from the reality of the system.
In one of the hospitals a doctor could not get an IV line started on Joe so he decided to try and put it into a vein in his neck. Have you ever been stabbed in the neck? It doesn’t feel good. Joe almost jumped off of the bed. After telling the doctor to stop he asked me why I cared. He said that Joe couldn’t feel anything anyway. This is compassion???
Everyone is in a hurry anymore including doctors and nurses. They don’t want to spend any more time that they have to on one patient. Scary isn’t it? This is the world of the sick. You cannot go into the hospital by yourself. You have to have a team watching out for you because the healthcare system cares about treating you in the least expensive way possible, not with an eye towards the best outcome for you. Remember this and talk with someone you trust before something happens to you so they can be there for you each step of the way. It’s a scary world out there.
9/23/2012 – Linda
Night time is the hardest time of the day. The loneliness wells up as the darkness sets in. Have you ever loved someone so much that you wonder why your life, your very existence, continued when the life of your loved one was taken away? I know the stock answer to that question, “God has a plan,” well sometimes it would be nice if I had a hint as to why Joe had to suffer so much.
Imagine your world without being able to hold the hand of the one you love ever again, share a joke or smell their cologne. Sometimes I think I get a whiff of it as I pass through our bedroom. Having them walk in the door at 5:30 and yell, “Honey what’s for dinner.” Now imagine no one coming home, no hand to hold, no joke to laugh at. These are like pieces of the puzzle that when put together makes up the pattern of your life.
These are things that you do not think of until death takes you apart. The darkness of the night brings back memories and thoughts that I will never be able to do all of those things again.
1/20/2012 – Linda
I just got home from the Chili cook-off that the (your) foundation held. What a lot of work! Brian and I did most of the work. We were very glad to see the evening wrap up. We did not break even but more people know about the foundation and strokes now and that is what we are all about. The chili was great and the evening was fun. I guess what more can you ask for? Through all of this I met a family that owns a business in Ponte Vedra Beach that donated some things for the raffle. The grandmother had a stroke and was in a nursing home when I first met them. The nursing home was giving them a deadline to move her to another place. Why?????? They said that they did not want to take care of her or did not have the staff to take care of her. I know the place and it is the country club of nursing homes. The real reason would be that they do not want to be bothered. I ran into that a lot with Joe. He was in and out of six nursing homes throughout the 15 months of fighting for his life. Any nursing home that was good or half-way decent would not want to bother with him because he was “complicated”.
In one facility they never even went in to check on him for the whole day. He was sent back to the hospital that night. Joe was “locked in” which meant that he could not talk or move but he knew what was going on. Read the book or Google, which I have gotten very good at since Joe had his stroke, “The Butterfly and the Diving Bell”. I was very enlightened. After reading this book I was afraid to leave Joe for fear of what was happening to him when I was not there. One of the nursing homes had a nurse that I swear had a crush on Joe. She told me that Joe smiled at her and winked. What was she doing when I was not there??? Hopefully giving him lots of great care.
Two of the nursing homes were in the Miami area. The insurance company sent Joe (and me also) to Miami because that was the only nursing home that would take him. You are transported, which is a six hour drive, to the first nursing home. Imagine riding for six hours flat on your back, strapped to a board. Makes my back hurt to think about it! We arrive to a room that is dirty. The floor has dirt and what looks like vomit. There is one light in the room probably so you can’t see all the grime. The bed is rusty and the paint is peeling off and the oxygen unit has a black soot-like substance on it. Looks like it just came out of the basement.
I meet the head of the nursing home the next day. He reminds me of one of the aliens from “Men in Black”, the one with the big body and the wee little head. He turns out to be a big buffoon. I also met the Social Services lady who tells me that I should not stay after dark because the area is bad. Nice! This was on Friday. By the next Tuesday Joe was transported to the closest hospital with infection and breathing issues. I had already contacted AHCA, the health association, about the condition of the nursing home. They paid the home a surprise visit and found several violations. Mr. Buffoon was told to clean up or close up. To date they have been paid several more visits.
Nursing homes, I found out, are private businesses and unless there is abuse you can document there is nothing you can do about making them take your family member. I tried everything I could think of to get him in a place that was clean and had a good staff. I spoke with Senators, ACHA and the state elder affairs department, all to no avail.
2/15/2011 – Linda
I’m on my way back from spending four days at Disney World with my kids and granddaughter. This was a trip that Joe, my husband of 40 years, had wanted to take with his granddaughter. We had talked about it many times but Joe would always say, “Let’s do it next year,” when she’s older and will enjoy it more. That next year never came for Joe.
Joe suffered a massive brain stem stroke on August 22, 2009. Brain stem strokes are very rare. Most people do not survive the hit. Joe survived though and was left in a “locked in” condition.
I came home from work at 5:30 pm and found him down on the floor staring up at me. I think he probably had the stroke around 11:00 that morning. I called 911 and shortly we were on our way to what would become a journey into the medical world that would frighten, bewilder, dismay, anger and at times, albeit rarely, uplift. A journey that would take us in and out of eighteen hospitals, rehab facilities, and nursing homes in 16 months.
Just like his father, Joe was a person who saved everything. Gifts would always be reserved for a special occasion to wear or use them. Since the stroke, I have found several articles of clothing and shoes that he was saving, the special occasion for their use never coming. This was the same with taking trips. He loved going on cruises but wanted to save the fun for another time. This was the reason that Joe never got to see his granddaughter’s face light up when she saw the Cinderella Castle at Disney World for the first time.
Savor the moment and the people around you in the moment. Don’t live in the future because that future may never come for you. When you suffer a stroke, you live from one minute to the next. Your future is put on hold.
Check back for more on Joe’s Journey. This is a journey you’ll want to be a part of.