Sunday, January 29, 2012


     Accidents can happen when you have a colostomy bag, especially if the adhesive bothers your skin, which was Wayne’s problem.  Even paper tape caused his skin to break out into a rash.  You can imagine how it could itch with tape in a large circle, holding a colostomy bag in place.  He scratched and sometimes picked at the adhesive, which broke the seal, and a mess resulted.
     Another problem is that sometimes you get a bad tube of adhesive.  One day the nurse called from the dialysis center to tell me to come over to the hospital and bring the supplies to change Wayne’s colostomy.  It had come loose and he was a mess.  The colostomy nurse was out and they needed help fast.  Of course, they didn’t want everything to be contaminated in the center.  I took all the new products that I needed, including a complete change of clothes for him.  He was embarrassed, but the nurses at the center only called him Stinky for a little while.  They had a good sense of humor and turned it into a little joke.  I’ll bet the rest of the patients in the center were glad to see me come to the rescue.  It didn’t smell very good in there, but I brought my deodorizer and saved the day.
     It isn’t fun and games, but it helps when you can laugh at an unfortunate situation.  The nurses in the dialysis center are a great bunch and they have to cope with a lot of strange problems.  Some of the patients get agitated during dialysis and the staff has to deal with the situation, sometimes by medicating the patients.  After all, they are forced to sit or lay on a gurney for three to four hours while keeping their arm still.  It isn’t easy.  Dialysis affects people differently, so the nursing staff has to be on the lookout for all types of behavior.
     They try to make it as pleasant as possible, by having a television in front of each patient with earphones so that the other people aren’t disturbed.  But it is a long time to stay still. Some of the patients simply sleep through the whole procedure...that
is the best way.  Whatever way they handle it, it is not fun for them.  However, the nurses always deal with every situation with a smile.
     Wayne was doing pretty well, but he hated his colostomy bag.  He asked the doctor if he could have it reversed. We conferred with two other doctors and decided to get the job done.  In June, he was preparing for the surgery when we had a terrible accident with the colostomy.  Wayne had to go in for a colonoscopy before having his colostomy reversed.  He was required to drink a nasty solution, Colyte, to clean out his intestines so that they could do the colonoscopy.  He hated it.  It tasted horrible, and besides that, he was required to drink a gallon of it.  Well, we thought at least he didn’t have to worry about sitting on the commode for hours.
     All was well until an hour after he started to drink the solution.  I was waiting patiently for my job to begin, when he yelled for help.  His colostomy was leaking, and boy was it leaking.  All over the bed, his clothes, the floor, and it wouldn’t stop because of the medication.  I have never had such a mess in my life.  It was hard to try to change the bag, when the solution wouldn’t stop running out of the tube.  I was laughing so hard that I couldn’t see.  But, then he stopped drinking the solution and there was a break.  I hurried to change the bag. It was a race and I was laughing all the time.  It reminded me of I I Love Lucy, when she was trying to wrap chocolates and the conveyor belt kept speeding up.  What a mess!  We have laughed about his incident many times, especially when we are telling our friends about my adventures in caregiving.  At least we can still laugh about it.

Thursday, January 26, 2012

Chapter 9 more...Colostomy

     I thought I would cry when I learned that the doctors had given my husband a colostomy.  At first he had been given the temporary colostomy to rest his bowel as he got well.
     As it turned out, the colostomy was a godsend, for he was unable to walk, which meant he couldn’t use the bathroom himself anyway, and besides he was not lucid most of the time.  He had also become fecal incontinent after his stroke a few months before his hospitalization.  To say that he has had a rough time of it would be a gross understatement The hospitalization lasted three months, this time.
     Patients with renal failure have special needs.  You must be extremely careful with medications given, as well as any anesthetic that is necessary.  Before his hospitalization, my husband was on peritoneal dialysis, a procedure that is done in the home by the patient.  This left him free to travel and pursue a normal life style.
     Things changed when Wayne was released into my care.  He could no longer walk or stand by himself.  During his stay with me in the apartment, his colostomy was a good thing, for he was in bed the majority of the time and I had to care for him.  It made my life a little easier.  I’m not a nurse, but I learned a lot about caring for a patient who is bedridden.  I could have used a lot of this knowledge when I was struggling to care for my mother-in-law.
     A typical day started early with a bed bath, clean clothes, a shave, and a tube feeding.  Then came a transfer to the wheelchair while clean linens were put on the bed.
     Wayne was fed through the gastrostomy tube that was surgically implanted in his stomach through the abdominal wall.  This made feeding easy; it was a method much better than intravenous feeding, which was more difficult and took much more skill than I had yet acquired.  This tube also made giving him medication much easier, since he couldn’t swallow very well.  In fact, everything was done through this tube, for a time.
     Next, we had to empty the colostomy bag, clean it and deodorize it.  This was a simple procedure, although it was a little odoriferous.  Actually it just plain stank!  But it beat the alternative, which was cleaning up accidents in the bed.  Although it sounds gross, it really isn’t.  You can keep the bag odor-free with deodorizers, plus you empty it as often as necessary.  It is also much easier when your patient is bedridden.  They don’t have to do anything.  You just empty the bag into a container and take it to the bathroom and flush it.
     The bags are also easy to replace; however, it is easier to replace a colostomy bag than to empty one, with much less odor.  There are some items necessary for the changing, such as deodorizer and a wash that is placed inside the bag to hold down the odor.  You place all the items that are needed on a towel, with a wet cloth nearby for cleaning the opening of the bag.  There is a clip on the end of the colostomy bag that is removed to empty it.  You then fold back the first half inch of the bag like a cuff to keep it clean, and empty the bag into a container.  Spray the deodorizer in the air around the bed to kill any odor.  If this his handled correctly there is very little offensive odor.  After the bag is deodorized, unfold the cuff and turn it up and over the clip, fasten it and you are done until the next time.
     But, you know, there are always problems...but that is for next time.

Friday, January 20, 2012


Betty Boop: CHAPTER 5 CONTINUED: Sleep deprivation can really make you think about all the things that scare you to death. When you are fighting a man who is out of hi...


     Sleep deprivation can really make you think about all the things that scare you to death.  When you are fighting a man who is out of his mind, you wonder why God doesn’t just end his life and be done with it?  Why put him through such misery?  I know that I could never take a person’s life, but the thought ran through my mind more than once.  My frustration at not being able to calm him made me crazy too.
     I know that Wayne had no control over what was happening to him, but twenty-four hours without any sleep will do strange things to your mind and body.  There were many nights that I stayed awake all night and those were the nights that I wrote all night long.  When I was really tired, I would sit by the side of his bed in a chair with a pillow leaning on the bars of his hospital bed, trying desperately to grab a few minutes of sleep.  I would hold onto his hand, trying to calm him down, but to no avail.  I tried to nap during the day when he was sleeping, to give me the strength to stay awake all night.  This routine would last for about two weeks, then he might sleep through the night for a couple of days, and then he’d become restless all night again.  It was like having a sick baby, only I was too old to handle it like I could when I was young.
     Of course, I got through those trying times, even though I didn’t like them very much.  That’s what I took on when I asked to take care of him myself.  His doctor made me promise that if the burden got to be too much, I would talk with him about it.  Caring for Wayne was more than I had bargained for.  But I believe that it was better than a cold, heartless nursing home, where they would have sedated him to keep him quiet.
     I knew that while he was in the nursing home he was never really awake.  I believe that he must have been sedated all the time.  I know that if I had had a strong sedative those nights when he was wrestling with demons, I would have used it many times just to get some sleep.  Instead I drank a lot of coffee at night---strong coffee, and I don’t even like it.  We are lucky in one way; he didn’t remember any of the first six months we spent in Portland.  Of course, with him not remembering any of this, it was difficult to explain everything that had happened to him.  That would start the questions.
     It isn’t easy to find answers to these questions.  I tried to explain his complicated medical problems.  I told him that his doctor calls him his miracle patient.  They didn’t think he had a chance to survive--but he did.  So, I simply ask him to count his blessings.  He has a wife who would do anything for him, two daughters who love him dearly and don’t want to lose him, two darling grandchildren who visit him often and bring cheer to his day, a niece who visits regularly, and our wonderful neighbors, who are about the best.
     There are times when he becomes depressed about his condition, when he wishes he had died.  He says that we would all have been better off.  But that is the pain talking, plus not being able to play his favorite game of golf anymore.  We still have the goal that he will regain the strength in his legs, so that golf will again be his entertainment, not just watching from the sidelines.  After all, one miracle happened when he survived his ordeal.  Perhaps another is just around the corner.
Readers:  If this is helpful to you, please write and let me know.     

Saturday, January 14, 2012

Chapter 9...MORE and MORE

     During his hospitalization he wasn’t eating anything by mouth, but I knew that if he didn’t start soon, we would be forced to stay longer in Portland.  I encouraged Wayne to drink water, so that he would learn to swallow without aspirating.  He tried and tried, and finally he could drink a whole glass of water.  Then I started urging him to eat food.  It wasn’t long before he was eating almost everything.  I wanted the gastronomy tube (G tube) that had been surgically implanted in his stomach removed as quickly as possible, because it was often infected.  As much as I cleaned it and bandaged it, infection oozed out of the hole in his abdomen.  He was taking antibiotics, but he kept pulling on his tube or playing with it when he was agitated and that kept it irritated.  However, we had to wait until he could swallow his pills.
     The doctor was about to release Wayne to me when he had a grand mal seizure.  It was an experience I’ll never forget.  I was holding his hand so that the nurse could clean out the IV in his neck when it hit.  He pursed his lips tightly, his face turned deep red, then every muscle in his body contracted, and he folded into a fetal position, his muscles remaining tight for about eight seconds.  His eyes rolled back into his head and he lost consciousness.  They gave him two hundred milligrams of Phenobarbital, then two hundred more in a few hours.  He was given Phenobarbital twice a day to control the seizures, from then on.  This was a nasty medicine.  The side effects were bad, but---no seizures.
     Five days later, Wayne was released to me.  We lived in the apartment and I cared for him myself.  Of course, it wasn’t easy to give him twenty-four-hour care.  I kept him in restraints at night and took him back to the hospital in his wheelchair, for physical therapy three times a week and to dialysis three times a week.  My days were filled with giving the medications on time, bathing him in bed, changing his colostomy or just emptying it, feeding him through the G tube in his stomach---all the while keeping everything as sterile as possible.  Since there was a lot of laundry involved it was a good thing that the apartment had laundry facilities.
     There were terrible nights when he fought his restraints like a caged animal.  Then his eyes fill with fear and he rattled the bars on his bed railing, straining to get out of bed, picking at things in the air that weren’t there.  Sometimes he hallucinated about men who were trying to steal something from him.  He would roll up his covers in a ball and either clutch them to his chest like a child with a teddy bear, or try to throw them across the room.  He couldn’t stay still; the man was like a nest of ants, always moving.  All the while he breathed the deep, heavy breaths of someone terrified, or in a deep sleep.  It was those night that drove me crazy.  I didn’t know whether to laugh or cry. Sometimes I did both.
     When I asked the doctor about the heavy breathing, he said it could be caused by acidosis.  Sometimes deep breathing, over an extended period of time, can lead to hyperventilation, which in turn can trigger a seizure.  On those night when he was agitated, I gave him two milligrams of Haldol through his G tube, which should have calmed him down, but I might as well have given him a glass of water.  It did about as much good.

Sunday, January 8, 2012


     Wayne’s condition would get a little better, then worsen again.  I wasn’t sure that he would ever be the same.  After two months of this, I was discouraged and feared that he would never make it.  Sometimes the medication he was taking would make him agitated and irrational.  He would hallucinate and try to climb out of bed.  The nurses kept him restrained just to keep him in bed.  They called him Houdini, because he could wiggle out of his restraining vest with no trouble, and they would find him at the end of the bed.  They finally put an alarm on his leg, to alert them when he tried to get out of bed.
     Just when I thought that he was making headway, he would slip backwards again.  After about three months, it was decided that he would have to be discharged and placed in a nursing home.  I struggled with his decision, but I knew that it was best for him.  He needed physical therapy every day and good care.
     After five days in the nursing home, he got a blood clot in the arm that was used for dialysis and he was placed in the hospital again.  I refused to allow him to return to the home.  The staff didn’t call me to notify me that Wayne was taken to the hospital.  this type of notification is on policy that is too important to fail to comply with.  I was so upset I decided that if Wayne was released from the hospital, I would care for him myself.  I knew I could do a better job that the home, because I would be with him twenty-four hours a day.
     We had planned to take a trip to Arizona in March, so I had already sent a ticket to my daughter in London, so that she could come and stay with Mother while we were gone.  Our arrangement worked out great, even though we never went to Arizona.  She stayed for two months and cared for the house and Mother.
     Wayne went into the hospital February 8, and Pam came from London on March 1, and left April 26.  By that time, I had rented an apartment on the hospital grounds in preparation for taking care of Wayne.  St. Vincent’s has guest housing for families of the patients.  Pam brought Mom down to Portland and we lived in the apartment...Mom, me, two dogs, and Wayne when he was released from the hospital.
     After the doctor gave his blessing to my caring for Wayne, his nurses taught me all the procedures needed for his care.  The week before he was released, I was giving him his medication bathing him, changing his colostomy and any other procedure that he needed, under the nurses’ supervision.

Thursday, January 5, 2012


     Once a month we had Wayne’s blood drawn to monitor his blood chemistry.  The doctor could tell by the blood analysis what was going on in his body.  Wayne’s legs got weaker, but they couldn’t find a reason for it, except his failing kidneys and continuing dialysis.
     Then one night he had a stroke.  At first we weren’t aware that this had happened since it must have occurred in the middle of the night.  Usually when a stroke hits, one side of the body is paralyzed, at least for a short time.  Wayne didn’t have any outward signs of a stroke, except that he couldn’t keep his balance and he had problems walking straight.  These symptoms started the doctor looking for a cause.  When his monthly blood test returned with indications of an imbalance, the doctor wanted to see him immediately.  However, before we could get to Portland to see the doctor, Wayne collapsed and I couldn’t get him off the floor.  I called the doctor and we sent him by ambulance to St. Vincent’s Hospital in Portland.  He spent seventeen days in the hospital and we discovered that he had had a stroke.  Sadly, this news was just a taste of what was to come.
      We got through Christmas, but he was weak; his legs didn’t want to carry him well.  He was tired all the time too.  Then in February he became extremely weak, and collapsed again.  This time I had called for an ambulance before he collapsed and made arrangements to fly him to Portland, because winter mud slides had closed the road.  I would have to wait for the roads to clear before I could drive down.  Wayne was put in the Critical Care Unit for ten days, so I couldn’t have been with him too much.  He was completely out of his head, not knowing anything about what was happening to him.  They found he had a life-threatening case of peritonitis, due to a perforated bowel.  The surgeon performed a bowel resection, and a colostomy, and placed him on hemodialysis.  We almost lost him!
     With Wayne hospitalized in Portland and me two hundred miles away in Hermiston, I was faced with another dilemma.  I couldn’t leave my mother, for she needed someone with her most of the time, and she refused to stay along at night.  I tried to hire someone, but after two weeks it was so expensive that the family decided to help.
     Mother wouldn’t go to Casey’s home---she said the children would drive her crazy.  This really put a strain on my daughter Casey.  She lived in Boardman, which was 26 miles away, but she packed up her three-year-old son and drove to Hermiston every morning to stay with Mother, spend the night, then returned home each morning.  She got her twelve-year-old daughter, Nikki ,off to school and went back to our house to stay with mother again.  This routine went on for a month.
     I returned home every two weeks for clean clothes and to give Casey a break.  This was a hard time for everyone.  I lived in a motel for the first two weeks, but it was expensive, so our son-in-law Gary drove our motor home to Portland for me to stay in.  There wasn’t room in the RV park next to the hospital, so we parked near some bushes so it would be ready when a spot opened up.  I stayed in the motor home without water or electricity during some very cold weather.  One or two mornings the temperature inside the motor home was thirty four degrees.  Brrr!!!  My goose bumps had goose pimples.  I must have been quite a sight, with my sweat suit on for pajamas and five blankets piled over me.  My face was so cold each morning, I thought I had slept outside.  I would light the gas stove to warm up the place in the morning, and then hop back in bed until the chill was off.  Talk about a spit bath!  Spit would have been warmer than the water.  I made it through ten days of cold weather before a spot opened up in the park.  Boy, was it nice to take a hot sower and have heat for a change.
     I didn’t know anything about operating the motor home, so I couldn’t even light the hot water heater.  Luckily, it had been winterized.  Thank goodness for my son-in-law.  He got the hot water heater started and we filled the tank with water, and I was set for a while.
     With electricity, I could use the electric blanket and did it feel good!  I spent most of my waking hours with Wayne in the hospital, so i didn’t need too much, just a place to sleep...a warm place.  The nurses at the hospital were letting me use Wayne’s bathroom to shower until I got heat.  They said if it got too cold to just come in and sleep in the chair next to my husband.  The were so sweet.
     This RV park was right across from the hospital, actually, on the hospital grounds.  It was a short walk to the entrance of the hospital.  It was also free, which was good---I was getting low on funds.  That’s where I lived for the first two months or so.