Stories from Caregivers: Joyce from ALABAMA
AL
Joyce
FROM ALABAMA
My caregiving journey began somewhat innocuous at first in June of the first year. Henry, my husband was with me on a business trip to Tampa. He had begun spending his day sleeping and by the third day he informed me that he felt he had an issue with his urinary system. He had undergone 10 hours of multiple surgery procedures 17 years earlier for stage 3B bladder cancer. So for him to have issues with his kidneys was nothing out of the ordinary. I took him to the emergency room that evening. They ran the usual tests and prescribed a medication that his infections are normally resistant to. He has had numerous infections during the past 17 years and several have landed him in the hospital for several days. The doctor refused to believe what he was being told and continued to order the wrong medication. The following day I called our primary care physician who had cared for him in the past and asked for the name of the injection that quells his infections. Needless to say, we were back at the same emergency room the next evening. This time they did indeed listen and give him the correct prescription and as well as an injection. His condition improved somewhat. A month later found him sleeping most all day and night. His complaints were extreme thirst, equilibrium imbalance, and total body weakness. In the meantime he had been bitten by a couple of ticks when working outdoors. He was drinking ice water by the gallon which was quite unusual for him. Two months after his initial kidney infection he began getting huge hives all over his body. They would begin as his ankles and proceed upward covering every inch of skin except his face. They were extremely painful to the point he would strip his clothing off down to his undershorts. And, he was experiencing shortness of breath. This happened a total of 3 times over the next few months. Each time was a 911 call and ambulance ride to the emergency room. They would administer steroids intravenously. On the first visit they believed his allergic reaction to be caused by the medication for his kidney infection, the second time was his statin, and the third time they referred us to an allergist. The tick bites cause Rocky Mountain spotted fever that results in not being able consume any mammal meats (e.g. beef, pork, lamb, and bison). The bites didn't cause the normal Lyme disease instead they raise another glucose level in the body known as Alpha Gal and there is no known cure/remedy to lower it. By October my husband was so ill that his primary care physician and I decided it was time for a hospital stay to get to the bottom of what was really going on with him. And, it was a total waste of time. The hospitalist, whom I requested she call in both an Urologist and an Infectious Disease Specialist, had him for 3 days and sent him home on the medication that his kidney infection was resistant to. She even had the pathologists report on the urine culture where it was so stated. November brought us to a board certified urologist that our primary care physician's office referred us to. The physician entered the treatment room with the referral documentation in hand that included past CT scan reports and other pertinent medical information. He first statement was "I don't know why you are here I am just a surgeon"� (remember he is a board certified urologist and works in a urology group of physicians). I had to speak long and hard to him in order to first get my husband an injection to stabilize him over the weekend. And, second to get a referral to an infectious disease specialist. We were seen by the infectious disease specialist on Wednesday, the day before Thanksgiving. He took immediate action and sent us to the hospital to have a Hickman Catheter (central intravenous line inserted in a vein that goes direct to the heart). He had also ordered the antibiotic in intravenous fluids to be delivered to our home. You guessed it! This is when I became the primary care giver to my husband. Each and every day for more than a month I was home from work promptly on time to attach the intravenous antibiotic fluid to my husband's central line. I am the one who cared for the catheter and changed the sterile bandage. This went on through December when we had yet another 911 call and ambulance ride to the emergency room for his continual decline in his health. The physician checked him over and was about to release him when I asked him how I was to manage him at home since he could not keep any food or water in his system. Everything was coming up and he was dehydrating fast. I also informed him of the disastrous treatment he had received during his October stay. The physician immediately admitted him as an inpatient. This type a multitude of testing was performed which resulted in the discovery of kidney stones in both kidneys, 3 in the tube between his right kidney and bladder, and multiple stones in his neo bladder (the one made for him after his had been removed years earlier). During this stay the Hickman catheter was removed as his infection had cleared. We had another referral to a different urologist. This physician recommended surgery to remove the stones lodged in the tube in order to prevent blockage. It was scheduled for the end of January in the second year of our journey. We had several scans performed a couple of weeks before the planned hospital stay. My husband's medical condition was worsening. He called me a few days before his planned hospital admission to let me know that he, once again, had been throwing up water several times. I went home and took him to the emergency room. He was admitted to the hospital immediately as his regular glucose (blood sugar) level was 43 and his blood pressure was dangerously low. I stayed in his room with him. This inpatient stay was rather lengthy (January - February). He was seen by a speech pathologist who performed swallow tests. He could swallow a half teaspoon of applesauce but not a full teaspoon. A gastroenterologist was called in (not the one I requested). This physician stood at the end of my husband's bed and stated that he was putting my husband on a soft diet and should he be unable to eat the food then he would have a stomach tube inserted (very brash and cold - without concern). I asked if he was going to perform any tests to ascertain why my husband could not swallow. He said "No"�. Afterwards, I requested the hospitalist to call in the gastroenterologist I had requested. He did. My gastroenterologist was in my husband's room within 2 hours. He had treated my husband six weeks earlier during his previous inpatient stay. I was helping my husband to the bathroom (he was using a walker by now) so that he could catheterize his urinary neo bladder. The physician remarked that my husband wasn't the man he had treated six weeks earlier. His condition had rapidly deteriorated. This gastroenterologist order a scoping of his upper digestive system for the following morning. It did show a hardened area in his esophagus was why he could not swallow. A stomach tube was emplaced by an interventional radiologist. During this stay my husband was placed Total Parenteral Nutrition by an intravenous PIC line in his underarm. This fluid runs 24/7 and is changed once daily. The urologist ordered a Nephrostomy tube to be inserted into my husband's left kidney (the one that has stones in the tube to the bladder). The interventional radiologist ran a colored fluid through his tube to ascertain any blockages between the kidney and bladder. There were none found during the procedure. However, the urologist came to me in my husband's room (while he was sleeping) and informed me he was NOT going to perform the surgery as he as uncertain whether there was blockage or not. That my husband would be referred to an out-of-town specialist and hospital for the procedure. I insisted that this physician inform my husband of his decision. He agreed and never did so! I had to tell my husband that the surgery was not being accomplished. This was devastating news to a man who felt this was the cure to his physical issues! My husband was sent home, on Friday, with a PIC line under his left arm, a stomach tube, and a nephrostomy tube. That very afternoon the home health nurse from hell showed up at our home. She was very demanding and demeaning. She insisted on removing the PIC line leaving me absolutely no way of administering several intravenous fluids he now required. She out and out lied to both the infectious disease physician and to our primary care physician of why the PIC line was needed. I had to take the telephone into another room and resolve these issues for my husband with my primary care physician's nurse. She ordered medications for the weekend that I could administer using another method and scheduled him for a second Hickman Catheter placement the following Monday. While waiting with my husband on Monday for his central line placement the vascular surgeon arrived to speak with us. By this time we had a referral to the Vanderbilt Urology Clinic for his kidney stone removal. When I informed the surgeon of this he insisted on inserting a dual lumen catheter so that my husband would not suffer having additional intravenous lines started in his arms/hand for the surgery. His decision came to be a God send for us. Over the following 4 weeks I was administering 7 different bags of intravenous fluids daily, one of which ran 24/7. Additionally, I was preparing his food, blending and straining it in order to feed him through his stomach tube, keeping his Nephrostomy bag emptied, and changing both sterile dressings on his Hickman Catheter and his Nephrostomy tube as well as cleaning and caring for his stomach tube. When we traveled to Nashville, TN (February) for our appointment at Vanderbilt I had to take the fluids, administering kits and pole with us so that I could keep him supported with his needs. The endo-urologist stated that she will perform his surgery. However, she noted that there was much more wrong with him than the kidney and bladder stones. She recommended that when we returned home we get more referrals and have more consultations and testing performed to ascertain his actual issues. I immediately called our primary care physician and he referred us to the cancer center as well as recommending we return to our gastroenterologist for a possible colonoscopy. By this time, my husband was using a walker and when out and about a wheelchair when long walks were required. He added an additional issue in that he was going blind, temporarily, in his left eye. I did schedule an appointment with an ophthalmologist. We had an appointment later that day with the oncologist/hematologist at the cancer center. The ophthalmologist ran so far behind that we had to leave in order to make our next appointment. This turned out to be the best course of action for us. We met with the physician at the cancer center (March). I had copies of all scans and laboratory tests that had been performed at this point. She examined my husband and order a PET scan and more blood tests known as tumor markers. She stated that she did not feel that my husband had cancer. She felt there were other medical issues going on with him. We had the PET scan as scheduled a couple of days later. The very next day we received a telephone call requiring we return for an emergency MRI of his brain. We did. This procedure lasted 4 hours. We returned to consult with the physician 2 days later. She stated that my husband had Stage 4 cancer. It was in the lymph nodes of his lungs, deep inside his liver (weakness especially when walking), throughout his bony structure (especially in the iliac crest), a tumor behind the thyroid (swallowing issues), and 3 tumors in his brain (one in the cerebrum (equilibrium imbalance) and two at the hypothalamus portion of his pituitary gland (reason for his blindness). He asked how long his life expectancy was. She stated 10-12 weeks at most. The oncologist immediately admitted him into the hospital to get the swelling down in his brain. He spent 2 ½ days in the hospital. The gastroenterologist and the oncologist met in his room to discuss possible biopsies to perform in order to determine the source of his cancer. The gastroenterologist had stated the only procedure he could do was a colonoscopy. We discussed how difficult the procedure is for a well person and how it would affect my husband's current condition. We decided it was too harsh of a procedure to perform. The oncologist stated she could perform 1 of 2 biopsies, one deep inside his liver or one of his iliac crest; both of which would be very painful. I asked, "What was the point in finding the source rather than just keeping him comfortable?"� Both doctors and my husband agreed. The hospitalist entered his room on Friday afternoon to provide his instructions for release and the prescriptions he was sending him home with. One prescription was for a methyl prednisone dose pack of tablets. He had been on intravenous steroids 4 times daily. I queried the physician on how he was to swallow tablets since all he could consume was water. He stated to grind the tablets up, dissolve them in water, and put them through his stomach tube. I further inquired as to how these small strength tablets were to keep the swelling in his brain down given the much larger doses they had been administering. (Remember he has a central Intravenous line in where the nurses have been administering the steroids and other fluids). He stated that the dose pack would hold him over the weekend until we could contact our primary care physician. During my husband's short hospital stay I was informed that I need to select a hospice care company for them to send their referral documentation to. I selected, what turned out to be, a great hospice care service. The clinic director came to our home on Saturday to do the initial intake documents. I inquired to her regarding the steroid medications and she stated that they would provide the intravenous type of medication to be administered through his central line. The following weekend was outstanding as my husband had his disposition back and we enjoyed every minute. The previous weeks had been filled with anger, resentment, and no short-term memory of upcoming events all due to the swelling in his brain. Over the weekend I attempted both days to grind the prednisone tablets and dissolve them in water. I noticed on Saturday that most of the powder remained in the bottom of the glass I was using to dissolve it in. I continued to add water until I felt all of it was administered to my husband. On Sunday I noticed that the entire contents of the dissolved powder in water adhered to the sides of the syringe I was using to insert into the stomach tube for administration. That evening I researched the methyl prednisone medication and find that it is NOT water soluble. The physician should have known this and not prescribed it in tablet form. Monday morning arrives and I go into my husband's room to get him up for his morning urinary catheterization (he catheterizes though an opening his right side for his neo bladder and the Nephrostomy bag is on the left). I put him back in bed and head out to my office for a couple of hours. I arrive back home and discover he has been out of bed since I left, to the bathroom, and that his catheter is hanging from his undershorts on his right side. I get him up to walk him to the family room. He is so very weak he can hardly make this short walk he has been doing many times throughout the day. He tells me that he is now completely (not temporarily) blind in his left eye. I am working at home and I have my office setup in the family room where he spends his days. Throughout the day I am caring for him and he is responding less and less to me. He is lethargic and unresponsive. I call the cancer center and they tell me to get him to the emergency room immediately. I call the hospice center and my nurse makes the necessary arrangements and meets me at the hospital (we had not met before this occurrence). When the physician inquires as to what is going on I explain the previous hospital stay and the hospitalist's mistakes. He immediate orders his chart to be pulled and has the intravenous steroid medication administered. My husband awakens in a couple of hours and is quite coherent. He just doesn't know what has happened or how he got to the hospital. He remains as an inpatient for a week. During his stay there were numerous issues with the staff. They didn't know how to catheterize his neo bladder, they didn't know how to redress his sterile bandage on his Nephrostomy tube (they caused an abscess at the site), or how to change his Nephrostomy tubing and bag. They were unaware they had to order both the sterile bandage and bag from radiology versus central supply. I am the one who irrigated his neo bladder when it wouldn't drain, catheterize it, and change his Nephrostomy bag. He is home on hospice care and is no longer ambulatory (even with a walker). Let me explain what that means. The nurse stops by once a week, checks his vital signs, brings medications and supplies and inquires as to what is required. A nursing assistant comes by 3 times a week to bath him and change linens on his bed. The chaplain and social worker stops by occasionally to visit with him. During the first week of April I discover the abscess at the site of his Nephrostomy tube (at the regularly scheduled dressing change). The sterile bandage is to be either the clear breathable type or 1 sponge that is taped just on the side to allow air in. The nurse at the hospital covered it with first the clear breathable dressing, on top of the she had placed 2 sponges and then completely covered the entire area with 2"� bandaging tape allowing no air at all to his opening. One evening (3rd week of April) while my husband and I were watching a movie he handed me his Nephrostomy tube (the one that is supposed to be inside of his left kidney). I immediately realize that it must be replaced or he could become septic and die sooner. I call the hospice service and he is taken to the emergency room. They call the urologist and schedule the replacement the following morning. They are very kind and order the necessary laboratory tests required for the procedure so that he doesn't have to remain in radiology the next day awaiting the test results. We return home and then back to the radiology center the next morning. I bring the old tube with me and provide it to them. The radiologist is successful in finding the original opening and inserting a new tube. We go home (ambulance trips both ways)! My husband asked to see my son and my son visited with us over Mother's Day weekend. My husband was so determined to spend the weekend with my son that he refused his pain medication, even though he was in pain, as it made him sleep. It was a great time. My husband passed away 8 days later at the 9-week period after his cancer diagnosis. During those last days, he slept continuously, as I administered his steroid medication, catheterized him, fed and kept him hydrated, maintained his central line, Nephrostomy and stomach tubes. I had a pain pump connected to his central line as he had lost all of his muscular and fatty tissue. The medication from the pain patches no longer absorbed to alleviate his pain. He was aware the pain pump was working and knew where the button was to push to administer the medication. However, he would rouse enough to mouth the words "pain"� so that I would push the button for him. We live in an area where we were moved to, by my employer, 2 years prior to his illness beginning in June of the first year. There is no family in the area and no one to assist with his care. I am employed full time and thankfully I am allowed to work from home during this arduous time. I am the primary care giver 24/7 when he requires a very high level of care. He can longer walk, is blind in his left eye, his neo bladder requires catheterization every 4 hours (24/7), the Nephrostomy bag is emptied every 2-3 hours, is fed via stomach tube every 4 hours (5 times daily), is administered additional fluids via stomach tube every hour when not being fed, has intravenous medications administered via his central line twice daily (this is a slow procedure so that it doesn't adversely affect his brain), has pain medications administered via stomach tube as required, has pain patches changed every other day, has 2 sterile bandages changed weekly, has a central line requiring weekly maintenance, and a stomach tube that requires daily cleaning. My schedule mainly consisted of sleeping 2 to 2 ½ hours at night and eating a meal once every 48 hours. I lost 25 pounds of weight in a 2-month period (am a small frame, petite female, standing 5'7"� tall) went from 142 pounds to 117 and lost all of my body hair below my neck. My primary care physician scheduled my annual physical early as he was concerned I was developing my own medical issues. Thankfully, I was not. I loved my husband very much. We were soul mates. This I do not wish on anyone to endure. And, I would not have had it any other way.
