If you have not read Part 1, you should do so that the context here makes more sense as you read.
As we began our journey with Cushing’s in 2009, remember at this point it was not diagnosed as such. I began having sympathetic symptoms with my wife of then 33 years. It was all very odd to tell you the truth. Her inability to sleep through the night was the first symptom, and she had always slept 8 hours per night. I was usually comfortable with about 6-6.5 hours per night. However, I did need my 6.5 hours. I am a early riser and at that time I was getting up at 4:20 or 5 AM almost everyday. I drove an hour and a half commute to the office three days a week, the days I was up at 4:20. I was in my car and headed out the driveway by 5 AM.
When our primary care physician finally prescribed Ambien for Gini to help her sleep, we were relieved but after 2 hours the Ambien could not overcome the cortisol that was flooding her body. She would awake and have to take another Ambien. I would often if not usually awake when she took her second or third Ambien and as the Ambien enabled her to return to sleep, I was not so fortunate. I was now awake and wondering when I might go back to sleep. Honestly, I do not remember when this symptom ended, most likely when I asked her to sleep in the spare bedroom on nights I had to rise and got to the office.
I do not remember any other sympathetic symptoms but the many experiences through which I trekked with her are clearly burned in my memory. Frustration: This seemed like an endless companion to both of us and sometimes I would feel and express it more strongly than she would. The first time I reached my limit was in Dec. 2009 after 10-11 months of trying various medications and combinations of them to manage Gini’s hypertension. Nothing was controlling her blood pressure more than a few weeks at a time and she could not sleep through the night; I finally demanded that she ask the doctor for a referral to a specialist. He did so posthaste. At that appointment, almost 12 months after her hypertension diagnosis, the nephrologist stepped to the door of Gini’s exam room, stopped in the doorway, and exclaimed “you’ve got Cushing’s.”
A diagnosis was a relief but the following weeks were torturous. Tests, tests, scans, and so forth for weeks and finally her left adrenal gland was identified as the culprit. As a reminder, Cushing’s affects the adrenal glands or pituitary via an adenoma and causes the gland to overproduce cortisol. In late March, we visited the surgeon and he described her condition this way, “your body is reacting as though I had been giving you injections of 100 mg of cortisone everyday for a year.” Rather than the shape of a smooth-edge pyramid or tetrahedron, her left adrenal gland looked like a misshapen starfish wrapped around the top of her left kidney. He adjusted his schedule to work her in two weeks later. We were thankful for that.
The next two weeks were rough. Blood pressure would spike and cause headaches and she would need to isolate from almost all stimuli. I was again frustrated that I could do nothing to help my wife with her physical suffering. Finally, two days before surgery, Gini’s blood pressure spiked, 200/150. We had been told that she was not a likely candidate for a stroke but that day I thought the doctor was smoking something to make a statement like that. This was dangerous. Nothing, even narcotics, would touch her headache. She dressed, and we headed to the hospital 45 minutes from home April 6, 2010. On the way, I bought her an iced coffee with the hope that the caffeine would help the headache–yes, I thought about her blood pressure but we were desperate. Half way through the iced coffee, her headache began to subside. We decided things were out of control at home and continued to the hospital where she could get injections if the headache returned. Attentive admissions and nurses made us glad that we decided to come to the hospital early. I could relax and Gini could get some relief and rest before surgery.
Post-op was great. Twenty-four hours after her left adrenal gland was removed, the stress in her face was gone. She was drunk as a skunk on moonshine :). That was an incredible relief. I also received some relief as a caregiver; two friends both nurses volunteered to stay one night each with Gini so I could get some rest before I took her home. I am ever grateful for their sacrifice for me. Her recovery seemed to be going quite well and with two daughters visiting during the summer, Gini began exercising again. I remember distinctly thinking in July of 2010 that she had plateaued, she was no longer improving. By August, she was in full relapse. The only difference was that her blood pressure was stable, however, she was gaining weight and getting weakness in her legs. By late fall, she weighed more than I did–6’3″, 230 lbs. was my normal at the time. I have forgotten how we chose the endocrinologist, but he was outstanding, and we cut our Christmas with family short to return for our first visit in late December. My frustration level was almost off the charts by this time. Colloquially, I was “freaking out.” I am not sure that I can even express my level of frustration. Gini was quite discouraged at this point also.
The doctor gave us hope again and started a plan to confirm Cushing’s. As we left that day, for the first time in months we both breathed a sign of relief. It took a month of testing but when the results were in this precious, gentleman doctor told us it was Cushing’s but that he wanted to refer us to the university hospital in Little Rock, UAMS. Within a week we were in UAMS for the first of dozens of visits over the next two years. An exam was done, our new, very experienced doctor was sure Gini had Cushing’s again but needed to do tests to confirm from where in her body it was emanating. It seemed slow as the tests were false the first time. Finally, by the end of March the results were confirmed. We met our doctor in a consultation room rather than an exam room, strange. He told us Gini’s pituitary was the source of the Cushing’s and that he wanted to refer us to the National Institutes of Health in Bethesda, MD. We were floored. Facing such a diagnosis, we had assumed surgery and treatment would be done in Little Rock at UAMS. He told us two things–the NIH did this type of testing on the pituitary and surgery weekly and that UAMS had done it once a year in his fifteen years as head of endocrinology; in response to a question, he said if it was his wife he would take her to the NIH.
So, now I had a new challenge as if watching my wife’s life deteriorate were not enough, I had to try to schedule a flight to and hotel in Bethesda, MD where the NIH was located and come up with some way to pay for both. Because of her weight gain, Gini could not sit in economy seats unless it was at the bulkhead. She was too weak to sit on the exit rows. I spent days searching for a flight; the hotel was not too bad, there was a Marriott within a mile of the NIH. Within days, we received our first contact from NIH that told us to check in May 8, 2011 and plan for a two and a half week stay. Also, within that first week of searching for a flight and a hotel–I was planning on using a credit card to make the reservations–I received two calls, one to confirm where we needed to stay in Bethesda, MD and the other to confirm the flight times that would best meet our needs. The scheduled flight was for first class so that Gini would have a comfortable seat and I was there enjoying first class to serve her. Nothing but answered prayer and the love of a Christian brother could have done this. The hotel reservation for three weeks was paid for with company points with the hotel chain closest to the NIH. We both were speechless but thankful beyond words.
As I noted in the first article, there were a week of tests, confirmation, scheduling, and preparations for her “brain surgery” as she calls it. Gini was week +1 in ICU post-op. I walked into Gini’s ICU unit about 8:30 day one post-op. It was a fairly large room with several monitors and instruments at the head of the bed. One nurse was attending Gini, but as I walked in, there was literally a huddle just outside her door as 6-8 doctors studied a mobile computer station. Gini was wearing an oxygen mask and it was flooding her face with oxygen. She looked a bit dazed, but we spoke as I entered. I settled in the recliner in a corner and began my day on the laptop. I looked at the group of doctors outside of Gini’s bay a couple of times. Now I know that at times I am not the sharpest knife in the drawer, but I grew up in a medical family and it rather suddenly dawned on me that something was wrong, very wrong. I shut down the computer and gathered my things and moved to the ICU waiting area. I sat there a bit asking the Lord what was happening. Somewhere about 9-9:30 I returned to the ICU. I was just inside the doorway and the head doctor in our ICU wing entered. I ask him if he could tell me what was happening. He very directly responded–she has a bad infection so treating her with two potent antibiotics, her oxygen saturation is very low 77% or so and we must get that up or sedate her and tube her, she has a pulmonary embolus and we are treating that, and her blood pressure is too low. We were in a crisis! I thank him and walked out to allow him to manage Gini’s crisis.
I walked out to a near empty NIH Clinical Center. It was Friday and most patients went home for the weekend or until their next appointment. There were two ladies in the ICU waiting area and the weekend staff moving through the hallways. I wandered the floor talking to the Lord about how I would inform our 6 children that their Mom did not make it. At that time, they were much closer than they are today and all had cell phones. I knew if I called one the news would begin to spread as I called each one. I wanted to be and needed to be the one to talk to each son and daughter. I was surprisingly calm facing a very uncertain time. I was far more concerned that I meet the needs of our children than wondering what I would do if Gini did not survive. It seemed a bit strange at the time and now almost seems surreal. Fortunately, after lunch, by 2:30 to be exact, I met the chief doctor again and he updated me. They discovered the cause of her blood pressure drop–cortisone had been dropped from her treatment or not re-prescribed post-op. She seemed to have the right dose of blood thinner, that was just a wait and see event–keep her as still as possible to prevent the embolism from moving out of the lung. Her antibiotics were the correct ones for the infection. That meant that the only lasting problem was oxygen saturation which was problematic even after we arrived home. The crisis had changed our two and a half week stay to at least three weeks. A problem that did not require immediate attention but would be an issue in about 8 days.
We were finally released back to her pre-op room. Things seem to be going well except she could not eat much. She would feel nauseated almost every time she tried to eat. She was examined daily and no one could account for her nausea. She still needed supplemental oxygen and the pulmonary embolus was still present. Sometime during that week in the room Gini entered a crisis again. This time it was kept very quiet, and I did not realize we were in crisis again until we returned home. I was simply told they could not release her yet. This added another week to our stay. That meant that I had to reserve my room for another week. Our son called to tell me we received a check from some friends in Miss. With that deposit, I was able to pay for another week in the hotel.
After surgery, when waiting was the call for each day, loneliness began to trouble me. I ate breakfast alone although sometimes in the NIH cafeteria with a hundred people around. During lunch I helped Gini try to eat anything, literally anything at all. When she settled in to rest after lunch I headed to the snack bar or cafeteria to eat alone. After leaving the hospital for the last shuttle back to the hotel, I ate alone; sat in the hotel room alone; watched TV alone. You get the picture. I spent almost as many hours alone as I did with Gini in the room, perhaps more than in the room with Gini. I received a few calls during the week but everyone was busy–sister and brother-in-law were still working full-time; one daughter was working, self-employed; one son was taking care of the home front; and the other son and daughters were in school. I remember eating alone and watching the others around me. Most were talking to someone. When I ate at the hotel restaurant, I would often see one or more persons also eating alone and I longed to just talk to them. As is so often the case, when traveling alone, we try to fill our time with something, anything such as a cell phone, tablet, etc. This was the case when I noticed another person that was also alone in the restaurant. However, each one I saw seemed preoccupied likely only there for the one night. Loneliness is a voracious beast.
Let me close by jumping to one of the most challenging things a caregiver faces, caregiver burnout. Caregiver burnout is more insidious than loneliness. It can creep into a life or relationship and never be noticed. It can remain “under raps” for long periods of time. When it finally rears its ugly head, it can be managed or it can be like a sudden spring storm or a squall on the open ocean; it is there and unloads all its force in short order. Here are some indicators I have gleaned from multiple sources.
- Fatigue–physical, mental, emotional, spiritual; feel tired all the time
- Frustration–with oneself or with the one requiring care; over meals, clothing, conversations, almost anything in the relationship
- Overwhelmed–never feel like you are caught up on daily tasks, washing, cleaning, etc.
- Feel guilty–about your own needs, rest, relief, being tired, lonely, or not doing enough for the dependent
- Depression–often a result of other factors, if continuous see a physician
- Loneliness–comes when there are no relationships or no caring individuals to care for you
- Unhappy–I found this very general but it colored my days and nights because of our circumstances.
Weariness–often this is included in fatigue but the fatigue for me was almost always physical. Weariness I had never used the word before particularly not for me. I was an lifelong athlete and I knew tired, aching all over, wondering if I could last one more step or breath. I had NEVER known weariness. Weariness is all pervasive. There is no part of the person that is not affected. Sometimes it may be diagnosed as depression or a symptom of depression and that may well be the case in a practitioner’s thinking. For me, it was more related to my physical and mental state. I remember it felt like a physical weight hanging on me all the time. Weariness, I had never used the word in a sentence, never used it to describe how I felt, nothing more than read it a few times in literature. I was thankful when the realization came, likely from God, that I was experiencing weariness. Knowledge is helpful at the most unusual times. Realizing I was facing caregiver burnout and weariness allowed me to address them. The burnout, I searched the Internet for a description and steps to correct it or mitigate it. You must be sensitive to yourself, your body, your mind, your attitudes, you emotions. The weariness, it was good to have a name, a description for it. Now I could face it. If you become one needing care, you cannot help your dependent. I will address this burnout more in part three and will provide some steps to mitigate it as well.