The wait begins with a positive surprise

We all walked to the waiting area, and some time later I excused myself to go to the cafeteria to get a cold drink.  Andy said he would stay; he had brought stuff from work that had to be done.  Both of Clara’s daughters stood up and said they would walk down with me.  We walked to the cafeteria like a family; I think it was the first time I could ever remember it feeling like that.  Normally it seemed like us and them, always a division.  I thought of all the times following Clara’s various doctors’ appointments I would always call each of them to let them know what had happened, and it never seemed to really connect us. 

For the first time, I felt like we were connected and I was actually accepted.  It was almost strange to me how good that felt.  I had always thought I put most effort forth for Andy’s benefit; he had been more like a father to his sisters when they were growing up, than a brother.  Since their father abandoned the family when Andy was eight years old, and he was the oldest child, a lot of responsibility fell on him.  As we married and his sisters got older, at first he felt hurt at the lack of interest they seemed to have in their relationship with him.  I would remind him that is typical; as young ones grow up they get involved in their own interests.  I felt since we were older than them, it was more of our responsibility to reach out and stay in touch.  Now, we are walking to the hospital cafeteria and I am delighted to feel connected.  I wondered why that was so important to me.  As we walked we laughed and it was probably the best experience I had ever had with the two of them.  We came back to the waiting room for a rather extended wait.  Most of the other people that were in the waiting room when we first arrived had already received news of their loved ones and had cleared out.  

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

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Grandchildren are the best medicine!

The next night my son Mike drove up from Virginia to visit his grandmother and got to see some of his cousins who were visiting at the same time.  Clara seemed thrilled to have her grandchildren around, even with the pain she was dealing with.  The doctor that followed Clara’s care during dialysis was a nephrologist (kidney specialist), but Clara also needed a general practitioner to monitor all of her care as an inpatient.  I gave the nurse the name of the original doctor that saw Clara after the eye doctor, way back when, that met us in his office on a Sunday morning for the first time to see Clara.  He had managed Clara’s care up to dialysis.  The hospital contacted him.  When he walked into Clara’s hospital room he said, “Michele, how are you?!”  He gave me a hug.  I was shocked that he remembered my name.  Andy and both of his sisters were in the room.  He told them that he was always impressed with the care that I gave Clara and that he seldom sees a daughter care for her own mother the way I took care of my mother-in-law.  As kind as his words were, I was not sure how Clara’s daughters would take them.  To my happy surprise, it seemed like the first time they saw me in a good light.  After a while, one even got up and offered her seat to me since I was standing.  When we left after our visit, I told Andy I think I like it better when his sisters view me as a pain in the butt and suspiciously.  Their kindness threw me off and felt confusing.  By Thursday, it was four days since her break and she still was not as stable as was hoped.  The orthopedic said the surgery just could not wait.  At this point, the risks of waiting another day outweighed the risks of surgery.  Besides, Clara could not continue to lay there suffering.  Surgery was scheduled late in the day, around 5:30 p.m.  Andy and I, and both of her daughters were all there well before the surgery.  Clara was always nervous before any procedure, but she didn’t seem especially nervous before this major operation.  We all followed her gurney as she was wheeled down to the operating area.  As the nurses wheeled her into the first part of the operating entrance, we were told we could continue with her.  We stood in this hallway a few minutes until the anesthesiologist appeared.  He had lots of questions, but seemed like a kind, older man.  As he explained in detail to Clara what his role was, including how he would put a breathing tube down her throat, I stood there thinking that he should shut up.  In the past Clara always deferred things to me at doctor’s appointments because she didn’t like to hear the details.  I thought I should tell him that was too much information, but then reasoned that three of her children are standing there and saying nothing, Clara seemed okay with it, and I’m sure it was his responsibility to inform her.  I wanted to protect her from hearing it but couldn’t.  Within minutes, we were told to say our goodbyes and go to the waiting area, that someone would see us after her surgery and let us know when we could visit with her in recovery.  

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

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Lesson learned, DO NOT turn off my cell phone

That evening Andy was going to the hospital to see his mother after work and I knew at least his one sister would be there.  I went over to a friend’s house for one hour and did not even take my cell phone.  I wanted a break from life; I did not want to be contacted.  Afterward, I went over to my mother’s.  Since we live next door to one another, Zack saw me drive over there before coming home.  He came over and said, “Call Dad on his cell phone immediately.”  I called and asked, “What is going on?’’  Andy replied, “Mom coded.”  That was all he said.  I hopped in my car and hurried over to the hospital.  I tried to brace myself for anything.  I analyzed his words, “Mom coded.”  I thought if she was not revived he probably would have said, ‘Mom died.’  So I reasoned that she must have been resuscitated.  I wasn’t sure so I tried to prepare myself to be a support system.  Andy and his sister were in the hallway and there were a team of doctor’s surrounding Clara’s bed.  She was alive.  Andy filled me in on what happened.  He had asked his Mom if she wanted him to throw the tissue away in her hand and she said, “No thanks.”  Moments later he noticed she was not breathing and called for help.  She was resuscitated.  It was a terrible thing for Andy and his sister to witness.  I went over to Clara and stood next to her.  I was mad because I felt like Clara was bullied into this treatment that her hospital doctor insisted on, and Clara obviously had a reaction to it.  The hospital’s critical care doctor said that a toxic level of narcotics built up in Clara’s system.  Since her kidneys are non-functioning, and she was getting narcotic pain medication every four hours that it was like a drug overdose.  I wasn’t buying it.  That would have been more plausible if there wasn’t a special team in her room, filling out paperwork indicating there was a reaction to the treatment the doctor had done just a couple of hours before Clara coded.  Andy said later he could not believe that his mother was on monitors, yet the hospital staff failed to notice she coded until he called out for help.  He wondered if he wasn’t there; if the hospital would have noticed in time to save her life.  I said, “I wonder if you really did her a favor.”  I should have just thought that, but stupidly said it out loud.  I could see my words hurt him.  I did not mean that in a hurtful way, but I remained convinced that Clara had a terrible future ahead of her, ending in death.  I thought of my prayer about Clara dying quickly and I wondered if Andy screwed that up.  I kept my mouth shut about it after that, and just thought things.  After that, the doctor would only give Clara over the counter Tylenol for her pain.  The poor thing was in agony.

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

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Complications

The doctor confirmed my earlier suspicion that after surgery, she would be discharged from the hospital to a nursing home for rehabilitation.  It would be eight to twelve weeks before she could come home.  In my mind and heart, I knew Clara would not do well in a nursing home setting, even though I was already mentally planning on visiting her daily.  Then there was the matter of what was wrong with Clara to cause this weakness in the first place.  What was the unknown mass in her lung?  I imagined Clara in a nursing home dying a slow, painful death.  I prayed if she was going to die, if it was reasonable to ask, to help her die quickly.  I felt all of my hard work in Clara’s behalf went down the drain, as if it was all for nothing.  I wondered if her daughters were mad at me for Clara falling when I was caring for her.  I wondered how Andy felt about it.  It was a long hard night, but I kept all of these feelings to myself and would plant a smile on my face for everyone else.  The next morning, after Andy left for work, I decided to work on a funeral program for Clara.  My thinking was, if she dies it would be hard to write a nice obituary for her.  I wanted an obituary that when read, people would learn something about Clara they did not know before.  I knew even if it was not immediately needed, it would be needed in the months ahead.  I thought if I waited, I would be so drained emotionally I would not be able to do it justice.  I actually called a long time friend of Clara’s, that I am a friend with now, to ask her if my recollection of what Clara had previous related to me was accurate.  Other than that phone call, I did not dare tell anyone what I had been working on.  I’m a planner, so for me it made sense but I knew for her family it would be offensive.  When I arrived at the hospital, I was happy to see that the pain medication really knocked Clara out, as long as she was sleeping, she wasn’t suffering.  By Tuesday, two days later Clara was still not stable enough for surgery.  Even though she was off the Coumadin, her blood continued to thin without explanation.  Also, Clara had internal bleeding from the break.  Her condition was worsening.  I had been to the hospital for a visit and once I got home the doctor called wanting my approval for a particular treatment that she felt was necessary for Clara.  It was not a treatment I was comfortable with and I asked some questions.  The house doctor got a bit nasty with me and insinuated that I was jeopardizing Clara’s life.  I told her that I could not give permission to a treatment I did not feel was in Clara’s best interest.  I asked if there were any alternative treatment options.  This doctor demanded my approval and would not discuss any treatment options.  I refused approval until I knew all of Clara’s treatment options.  The doctor asked if there was another family member she could talk with.  I told her Clara’s daughter would be there in two hours and she could discuss it with her if she preferred and see if she would grant permission if she deemed it necessary. With that the phone call ended.  This doctor apparently went to Clara’s room and convinced her this treatment was of life or death urgency and Clara gave her verbal approval.  Since she was on the pain medication, they needed another family member to agree to it.  Now a nurse called to speak with me, said she was at the bedside with Clara and the doctor when Clara agreed to the treatment.  At that point, I felt like I had the right to fight for Clara, but I was not going to fight Clara.  If I was right or wrong in my opinion was not the issue now, it was supporting what Clara wanted.  She had the right to make her own choice.  I called Andy at work and told him what his mother wanted.  He was surprised at how stressed I was by giving permission for this treatment in his mother’s behalf since it was really her decision and not mine.  Clara actually had a durable health care power of attorney and Andy was listed as her health care agent.  He decided after our phone call, that he was going to invoke his authority as her health care agent and start making his mother’s medical decisions; I was out of the equation.  Finally, it was such a relief! 

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

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