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by Sue Tullos Duffy, Champaign, Illinois
When my husband, John, entered the hospital on March 6, 2014, we both knew this would be his final stay. His pain and pain medications for metastatic prostate cancer had increased markedly, and he had been admitted for pain control on February 21, just fifteen days before.
On Friday, March 14, John's breathing became difficult, and I told the nurse that I'd be spending the night. The next day, the oncologist told me to stay every night, since John didn't "have much time." We had no family who could help with watching, so that was totally up to me.
My vigil was challenging, lonely, and sometimes very scary. Every four days, I went home to shower, change clothes, do laundry, and meet with my reader to go through the mail and pay bills. But I never left without a nurse's permission and a statement that it was relatively safe for me to go. An educated guess about John's survival was all a nurse could give, but my duties at home were essential, and I was always back within two hours. I stayed at the hospital from March 14 until March 25, the day John died.
For those who expect to be in a similar situation, here are some helpful ideas.
Anyone staying at a hospital 24/7 must pack thoroughly. Unless you have transportation readily available, bring everything you think you might conceivably need. Besides the usual toiletries, bring towels and washcloths, since the hospital provides these only to patients. Pack all medications, both what you're taking, and what you think you might need, such as aspirin for an unexpected headache. This is very important, since the hospital cannot furnish any medication to visitors. Also, bring all relevant phone numbers with you, since you may need to give these to a nurse. Include home, cell, and work numbers for everyone on your list. Although you can make only local calls from the patient's hospital room, a nurse will make long distance calls for you if the need arises.
If you do not have both a health care and financial power of attorney (POA) for the person you're watching, know how to contact the individual who does. If at all possible, bring copies of both POAs with you, in case this information is not included in the patient's medical chart. If the patient becomes incompetent to make medical or financial decisions, the person with the POAs must be contacted.
On a more mundane note, be sure to pack some nonperishable snacks, in case you miss a meal, get hungry late at night, or just need some comfort food. I brought Snickers.
Be sure to bring something to keep yourself busy. If you don't, the day will drag by, and you will need something else to think of besides the patient's condition. This is especially relevant if your loved one can't interact with you. By the evening of March 10, John was only minimally conscious, and had stopped eating and drinking. Although he knew when I was in the room, he spoke to me only four times after that. This was very hard for me, since John and I had always talked practically nonstop. As an escape, I read poetry, listened to Renaissance music, and immersed myself in a historical novel.
Whatever else you pack, don't forget your earphones. These are a must, especially if your family member has a roommate, or the patient is critically ill and needs to rest. If you need to recharge your digital cartridge player, ask a nurse where an empty outlet is. Explain that you need to recharge your machine and that this won't take more than an hour. If you bring a radio or cassette recorder, pack plenty of batteries.
As much as you can, keep empty outlets available for the medical staff, who may need to use them. Whatever you do, don't unplug anything yourself, since each room has a computer where the nurses enter data.
If your faith is important to you or to the patient, it is fine to bring a meaningful religious symbol, such as a cross, Bible, Star of David or a Koran. Chaplains are available day and night should you or the patient need spiritual counsel. Protestant, Catholic, and Jewish chaplains are available at all large hospitals. Tell the nurse what your religious faith is, and she will call the appropriate person. If you come from another tradition than these and need religious comfort, let the nurse know. Medical staff and social workers are experts on community resources and will do their best to help.
If you travel to the hospital by taxi, request the cab driver to get an escort for you to take you to the room where you'll be watching. This will not inconvenience him, because the hospital employs people for this purpose. They will probably see your cab drive up and meet it. If not, the driver can easily wave at someone, since escorts stand just outside the hospital, at least on sunny days. If no one is there to offer assistance, ask the driver to walk in with you to the front desk. Since he must either leave his cab running or find a parking place in order to do this, tip him extra if you can--even if he insists he doesn't want the money--and regard this as an investment in good will.
When your escort arrives, he will probably have a wheelchair with him. The first time I was offered a wheelchair, I declined politely and explained that I could walk.
"We know you can," my escort replied. "We've seen you, but wheelchairs are faster."
Then I realized how busy these sighted guides are and always accepted a wheelchair after that. Once, when the elevator was full, my guide took me upstairs in an elevator for service employees only, which saved us both time.
On the way to the room where you'll be staying, ask your escort to stop by the gift shop so you can purchase meal tickets. Get as many as you think you'll need, and include weekend meals in your calculation. Gift shops are closed on Saturdays and Sundays. These tickets are inexpensive-- about seven dollars each--and apply only to meals prepared in the hospital kitchen. Though other restaurants are on the hospital premises, they are often crowded, largely self service, and do not deliver to patients' rooms.
When you arrive at the patient's room, ask to have the telephone and the nurse's button placed near you if the patient isn't using them. You especially need to have the nurse's button in easy reach, in case the patient has a sudden crisis, like shortness of breath or a spike in temperature. Before your escort leaves, ask for and remember the number for dining service. When you order your meal, you can order for the patient, too, if he's awake and hungry, unless a nurse tells you differently. Since hospitals usually don't have braille menus, you will need to have the menu read to you and remember what things you'd like to order. If the patient can do this, accept gladly. Hearing the whole menu may not be necessary, if you know generally what foods you like. Though nurses and volunteers are willing to help, and can occasionally read menus in free moments, they are very busy at meal times.
If you arrive hungry, but have not heard the menu, ask dining service for something most restaurants prepare, such as a roast beef sandwich. If you wish to order something but aren't sure it's on the menu, explain to dining service that you're blind, and then ask your question. If you don't, dining service may send up another menu, which, of course, won't solve your problem.
Remember that dining service representatives are often swamped with orders, so as much as possible, know what you want. Learn the names of the servers who bring your food. They will offer to help, since that is their job, so always thank them, even if you decline. I had to remind myself repeatedly that food servers had probably seen very few blind people, and most of these in a hospital setting. Since hospitals emphasize nutritious cuisine, heart healthy and diabetic choices are available.
For a blind person staying at the hospital 24/7, finding a bathroom is not only inconvenient, but potentially challenging. The bathroom adjoining the patient's room is for patients' use only, and could be needed by a maximum of four people. In most cases, unless a nurse tells you differently, you may use this bathroom only for washing your hands.
A nurse will be glad to show you where the public restroom is, but he or she may be hard to locate. You can press the nurse's button, or go to the nurses' desk, which you can identify by a ringing phone, medical conversation, and the sound of a typewriter. Either way, you're probably in for at least a short wait. Since John was in a private room and was using a catheter, and the room next door was empty, I did not have this problem, but have faced it in the past. Most hospitals won't let you shower, but I once stayed with John in an out-of-town hospital that did. Hospital policies aren't written in stone, so always ask questions.
Because you're staying 24/7, you will, of course, sleep in the patient's room, on a cot if you're lucky, or else in a chair. I slept in a chair from March 14 through March 24, and my slumber was erratic at best. Hospitals are relatively quiet at night, especially the oncology ward, but there is still more noise than you might expect. Telephones ring, elevators open and close, nurses come in to check patients' vital signs, and doctors often arrive before six AM.
In addition, the patient you're watching may wake up and be in the mood to talk, either to you or to a roommate. Since patients can make or receive calls at any time, your loved one or his roommate may decide to call home. Lastly, the person you're watching may have a medical crisis, or at least a need for you to get the nurse.
Between sleeping in the chair, waking up to help John, and being awakened when the nurse came in, I was definitely slumber-deprived. On average, I slept about four to six hours per night, which was not nearly enough for me. John's intravenous pain medications both ran out twice, and both beepers sounded at the same time. Since he hurt so badly, John always woke up moaning, so I stood beside his bed and talked to him until the nurse could administer both doses. Because she had to order the medicine from the downstairs pharmacy, there was a ten-minute wait whenever the beepers went off. In addition, one oncologist sometimes arrived at 5:30 AM, quizzing me about whether I'd eaten breakfast and urging me to go home and sleep in my own bed. He was very compassionate and answered all my many questions. Still, I was exhausted every day.
Because a patient's privacy is zealously guarded, doctors and nurses will provide medical information to you only if the patient consents. In the best of all possible worlds, this should be decided and scanned into the patient's medical chart long before the patient enters the hospital, but this is not insurmountable. If the patient is competent and conscious, he can give verbal consent for medical personnel to speak with you about his condition, but you can't make medical decisions without a health care POA, which goes into effect only if the patient becomes incapable.
On Thursday, March 13, I used my health care POA to sign John into hospice, which I knew he wanted. With my financial POA, I sold some of John's stock to pay funeral expenses and the last bill for our at-home caregivers. As John's wife, I also became a hospice client in order to participate in their program for grieving families after John's death.
On Sunday, March 16, I had a completely terrifying experience. About 5:15 PM, just after I'd finished dinner, John began gasping for breath. I had never heard such a frightening sound before, and I was sure he was dying. I pressed the nurse's button and explained what was happening. Fortunately, she arrived quickly, listened a moment, then said very clinically that John's gasping was "part of the process." I was afraid to stay by myself, and asked the nurse if I should remain until John stopped breathing.
"That's up to you," she answered, in a completely detached tone.
"I'm not leaving," I said. She left, and though my intellect understood that that nurse had many other patients to care for, my heart ached for someone to watch with me. I prayed for John until 7:45, when his breathing suddenly became normal. I was happy, of course, though I acknowledged on a soul-wrenching level that I would spend our final hour alone.
On Wednesday, March 19, the oncologist told me that John would die in a few days, and on Friday, March 21, I met with a local funeral director to plan the service. With the help of a friend from church, I selected a casket and prayer cards, which Catholics give as funeral remembrances, and provided information for John's obituary. Our meeting was held in a hospital conference room, for which I was grateful.
Four days later, John died, and, again, I was by myself. John's vital signs had been good that morning, and I'd promised the oncologist that I'd go home that night. Shortly after 6 PM, the nurse announced she was going to get her stethoscope, and I knew exactly what she was about to tell me. She listened a moment, then said very factually that John's heart had stopped beating, and he was gone.
I will always appreciate the young health care technician who waited with me while the nurse made the appropriate phone calls. He told me that John had died in his sleep, that his eyes were closed, that his death was not difficult, and that he looked peaceful. I touched my husband's cooling arm and gave him my last message.
"How did he last so long without food and water?" I asked the health care technician on our way downstairs, where he waited with me for my taxi.
"Because he was strong," the young man answered, emphasizing the adjective. "Even with the cancer, he was strong."
"Yes," I agreed, knowing what he meant. I'd seen John's strength for almost twenty-one years.
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