Don't Lose Heart

To start, I want to thank Jean for encouraging me to write my story and for the opportunity to share for good or not my experience as a caregiver.

My story begins back in 2002 when my mother, then 85, began having increased difficulty seeing because of macular degeneration.  I began helping her a little more at a time, with cooking, driving where she needed and wanted to go, you know, little, everyday, things.  At the time I was getting help from one of my sisters, she would spend an evening with mom now and again to give me a break to cut my grass or work around my house.  I decided to finish up some college courses I had started several years before which meant my sister would have to help on a more regular basis for a few months.  I didn’t think that would be such a sacrifice, I was wrong.  When I finished class in the spring of 2003 my sister informed my mother and I that she was no longer going to give up what she wanted to do and was going to accept the invitations from her friends to go to dinners or cookouts or what ever she wanted to do.  I could relate to that since my friends had stopped inviting me to do things with them, so, I thanked her for her help and assumed the responsibility for my mom’s care which had grown considerably.

Mom’s health issues had grown significantly with her eyesight getting slowly worse and her heart showing signs of being now 86.  Medicine and doctor’s appointments now consumed a good deal of time each week which meant free time for my home and work was now at a premium.  But I worked out a schedule I thought I could live with and pressed on.  I would take care of my dogs at 5 each morning and then go to work by 6.  Go home at 2, change, take care of the dogs and be at moms’ by 4.  Dinner, clean up and daily chores we all have to do filled out the evening until 10.  Then back home to the dogs, a shower, daily things that could not be ignored and in bed by 11, usually.  I have not elaborated on all the little things that we all do everyday without even thinking about them, but they do take time and you have to keep going to get them all done each day, for two homes.

Flash forward to Christmas of 2003, I took my sister aside and told her my tank was empty, I needed help, I was exhausted.  She said she understood and would come by more often to help and give me a break.  That was the last I saw of her until May of 2004.  Now, to be fair, I must tell you that she had a granddaughter in the hospital during that whole time being treated for cancer. Her granddaughter was young enough that the hospital set up a room and let her mother stay with her, but I still understand the fear she had.  At the time I didn’t because I was angry and exhausted, but now I understand.

By the time my sister felt she could help, I had a system worked out where, if she could spare some time, all that was left was paying the occasional bill and keeping mom company for a couple hours until she was ready for bed.  While this was only about once a week, it did help.

Now here comes the price I wound up paying.  On June 17th, at about 2 in the afternoon, I was working in the yard at home when I felt a sudden “something” that started me pouring sweat like I had never experienced before.  I went into the house and got a cold drink and sat in front of a fan to cool off.  After about a half hour I felt better and finished up what work I had to get done and then showered and went to take care of mom.  From that moment on things have never been the same in my life.  I must take a moment here to explain how I can be so precise in time and events of that day.  I have worked at a prison for 25 years and whenever there is an event, I have conditioned myself to look at my watch in case I have to do paperwork so I can get the facts correct.  I remembered the day so clearly simply because I started keeping track of things more closely from then on.

I noticed that I started eating less and drinking more, all fluids, milk, pop, water, tea, if it was wet I was going to drink it.  Even in church, I couldn’t sit through a sermon unless I had a bottle of water.  I started to lose weight, which I thought was good, and a healthy result of eating less and keeping busy in the summer weather.  Then one Sunday my pastor stopped me and asked me if I was feeling O.K.  I assured him I was even though I wasn’t so sure anymore.  I started being even more attentive to my weight and sweating and fluid consumption and my severely decreased energy level.

This was happening about the first of August, so I made an appointment to see my doctor.  Of course, being a guy, this was a HUGE red flag.  Go to a doctor?  Me?  PUHLEASZ!!!

I had done a little research on my own and was thinking I had the symptoms of diabetes.  Unfortunately, I was right.  The date was August 10th.  I had not waited for my regular appointment with my doctor scheduled for the 20th.  With results in hand, information in writing and medicine to start dealing with the symptoms, I went home to follow the orders given.

Ten days later, August 20th, 2005, back in my doctor’s office, 9 in the morning.  Testing begins.  Blood work, vitals, more vitals, more testing.  By 1030 the results are back, yes, I have diabetes, the numbers are pretty promising having only been on the medicine for 10 days and I was feeling the best I had felt in weeks.

August 20th, 2005, 11 a.m. I call my best friend and tell her the results and how much better I feel and how relieved I am to know what the game plan is.  She’s happy, her husband is happy; mom is happy, smiles all around.

August 20th, 2005 3 p.m., I am cleaning house when I reach up, but feel something pull in my back.   Annoying enough to take an Advil and sit for awhile.  About 30 minutes later I call mom and tell her I am on my way in to fix her dinner but I was going to stop by a hospital on the way and see if they can help relieve this pain.

I pull into the parking lot of St. John hospital, miracle number 1, I walk into the emergency area and there stands a nurse, miracle number 2, she asks if she can help and I tell her what is going on and she takes me into the emergency room where there is no one except the emergency room doctor, miracle number 3.  I sit on an exam table and give the nurse my history, in brief, and a list of the medications I am on, she walks over to talk to the doctor, I slump over, no pulse, no respiration, technically, dead.  I wake up the following Tuesday night.  At a different hospital, in their I.C.U.

Over the next two weeks this is what I learned about what happened.  Of course a code was called at St. John hospital and I guess anyone who had any knowledge of emergencies came running.  The nurse and doctor began C.P.R. and shocking me.  A cardiologist happened to be in the hospital, on a Saturday afternoon.  Coincidence or miracle?  He worked to stabilize me with no luck, called Providence hospital in Kansas City and located his partner, also in the hospital on a Saturday afternoon.  See a pattern?  I was rushed down to Providence, while on the way I came too for a moment and saw the nurse’s face and she was yelling at me not to give up, to keep fighting, to keep breathing.  All I remember was wondering what the HELL are you yelling about and who are you yelling at and what makes you think I have any plans not to keep breathing.  Then they shocked me, again, boy let me tell you what, that hurts like hell.  I passed out again and finally awoke for a couple of minutes to see my sister leaning over me telling me to rest and my mom kissing my forehead and telling me she was leaving me in God’s hands.  If you think I was confused before, you should have been inside my head at that moment.  Yet again I passed out.  That was all I was aware of until Tuesday night.

I was in the hospital for two weeks while they ran tests and treated whatever was wrong with me.  Finally about the 3rd or 4th day out of I.C.U. a doctor came by and said he was the cardiologist who received me at Providence and he thought I might have some questions.  I assured him I did!  I was presented at the hospital, as they say, with numerous problems and complications.  My heart had stopped, several times, and was shocked back into a normal rhythm some 105 times!  Upon stabilizing my heart to where I could be further examined it was found that I had a 104 degree temperature and climbing.  My kidneys had shut down; my liver was not working either.  My lungs could not provide enough oxygen, so they put me on a respirator; my temperature was high enough that they were concerned about brain damage. (I told him that was too late, he didn’t laugh.)  I had been under the care of some 7 different specialists for the past 4 days until I finally began to respond to treatment.  I asked him what happened and he said they just didn’t know yet.  I told him I thought he had saved my life and he declined the compliment, saying in the case they were so baffled that it wasn’t they who saved me, that in his experience only 1 out ever 10 people who arrive at a hospital in the condition I was in manages to survive everything I had stacked against me.

I was in the hospital for 2 full weeks because of some infection they couldn’t isolate or identify, during which time I became something of a conversational topic, at one point being referred to as “oh, you’re him!”  I wasn’t sure if I was supposed to be flattered or not.

Finally, I got fed up with the hospital and started wanting to go home.  The doctors all got together and decided I could.  So the day before I went home the cardiologist came in to give me the all clear and I asked him if he knew what had caused all this and he said the only constant they could all agree on that could cause this much damage was stress and exhaustion.  So they told me to change my life style and slow down and that my case had been referred to the insurance company and they had authorized an operation to implant a pace maker combination defibrillator into my chest.  It was not a popular idea to me and everyone agreed I was too young to have to go through this but that it really was necessary.  So about 10 days after I got home I was back at the hospital for the operation.  That led me to remain confined to the house for another 10 days until I had to go in for a check of the surgery.  Since I could do that I figured I could drive in and see mom.  Since my incapacitation had been such an imposition on my sisters, when they found out I had gone in to see mom, they stopped helping her and I was right back carrying the load alone again.  But I loved my mom and I did it, but I wasn’t happy about it and neither was mom.  She passed away on November 4th, 2006 and I have no regrets, deep sorrow, of course, but no regrets.  She gave me life, and I gave her all I could to help her last few years be whatever she wanted them to be.