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by Phyllis Campbell, Staunton, Virginia
I knew they were coming, those words that launched us on the last stage of our journey--a journey spanning five years from my husband's first elusive symptoms, to the diagnosis of lymphoma, through chemo, transfusions, and finally, to this day
"I've done all I can," Dr. Ambika said in his quiet voice.
"Should I call hospice?" I tried to keep my voice steady. I think I succeeded.
"Think about it, and let me know," he said, taking Chuck's hand, and then coming to touch my shoulder.
In such a situation, it is often hard to make an unemotional decision. I'm sure he knew what our decision would be, but he also knew that that decision would have to be ours.
So we explored possibilities together. A nursing home would be expensive and, unless forced to, I knew I couldn't send Chuck away to spend his last days among strangers, especially since transportation would be such a problem for me. Home health? A possibility. Hospice? I knew little about hospice, except that many people sought help from them, but what was the cost? What services did they offer? Could I do my part?
I went online, then called the hospital where Chuck had received treatment. The nurse I spoke with was professional, yet warm, assuring me that they would give me whatever help they could. I left word with Dr. Ambika's nurse, so that he could give them the information for a nurse to visit and talk with us. In less than an hour they called and set up an appointment in our home.
She explained that their services would be absolutely free, with Medicare paying and no extra expense coming to us. They arranged for an aide to come daily to help with Chuck's bath, shaving, and linen change, and they would have helped with light cooking and laundry, but I was pleased to be able to do that. A nurse visited twice a week, checked his health and medications, and made changes where necessary. Someone was on call day and night, seven days a week, in case of an emergency. A social worker made regular visits giving practical advice and comfort. A chaplain was also available if requested.
The word "hospice" dates back centuries. Usually associated with monasteries, it was a guest house of sorts, offering medical attention, food and shelter to travelers, often pilgrims on their way to a holy shrine. Today hospice offers much the same things, giving medical assistance and emotional shelter to those traveling toward that final earthly destination we call death. This journey, too, is filled with dangers, fear, loneliness and despair. And like the comfort given by the hospice of old, our modern hospice reaches out, offering the same things.
Although hospice was the right decision for us, it might not be for everybody. Think carefully and take a good honest look at yourself, your abilities, your physical and emotional health and your finances. This situation won't be easy whatever you decide. It is sometimes grueling, heartbreaking work, especially if you opt to keep your loved one at home. Realize that although this may sound like a noble, even romantic thing to do, it isn't. Are you prepared to give medications? Are you prepared to change adult diapers if necessary? Hospice is there to support you, but they aren't there 24/7. Are you physically and emotionally able to bear the strain? Do you have friends or family to help?
Remember, you can probably do many things you never thought you could. If you feel unable to do some of the physical things that may become necessary toward the end of the journey, talk to the social worker. Hospice has a list of competent caregivers who will assist you, but you must be prepared to pay for their services, although Medicaid can assist those who are eligible. Your social worker can help you get in touch with the proper agency.
Medications? You will be given a box, the comfort box, containing medications that you will need to keep on hand. If you have a problem, the nurse on call may instruct you to go to the comfort box and give the appropriate medication. Obviously, you will need to be able to identify it, and although she/he will give you directions, it's a good idea to know what the label says. Be prepared to make note of any instructions the nurse feels need to be different from those on the bottle. This could be a stumbling block, but it is easily remedied.
Enter our old pal Pen Friend with its labels. The nurse can easily record the name of the medication and instructions on the little label, which can then be attached to the appropriate bottle or package. I am an avid Braille user, but this was a faster and more practical solution for me because the nurse could have name and instructions done almost in the time I could have started to write.
There was only one thing that I had to have done for me--I couldn't fill the morphine syringes. These could be prepared, a number at a time, so that I always had them on hand. These weren't for injections, but to be placed under the tongue. I also knew I couldn't possibly face that last vigil alone. The social worker assured me that when the end was near, they would send a vigil team to watch with me. I had no close friends in a position to share this with me, and my nearest relative able to do so lives about 12 hours away. My only sister is in a nursing home, so although she's here in town, she couldn't help.
As it happened, my niece and her daughter, who is a respiratory therapist just out of college, were both able to take time off and walk with us on the last steps of the journey as that blank wall became an open door.
Would I advise anyone else to go the hospice route? Absolutely! For me at least, they made what could have been an unbearable experience into one that gave my husband dignity for his last days and left me with the feeling that I had done all that I could. They provided excellent medical care and advised about such practical things as what to do if he fell or had to be transported to the hospital. There were so many little things that never would have occurred to me until they came up.
How to contact hospice? My best advice is to ask your hospital. Almost without fail, they will be working closely with a hospice chapter in your area and can probably connect your call directly to them.
What single piece of advice would I give in working with hospice? Work closely with your nurses and social worker and if you have a concern, discuss it honestly with them. Don't be ashamed. They aren't there to judge you; they're there to help. If your blindness presents a special problem, tell them about it. Be prepared to do your job, and they will help you find a solution or find someone who can help.
Would I do it again? Absolutely. What would I do differently? The major thing would be, I think, to bring in help at night sooner than I did. I was my husband's sole caregiver, except for an aide who came daily for about an hour. The rest of the time, day and night, I was alone. I did get help at night for the last few weeks, but to say that I wasn't exhausted would be an untruth of monumental proportion.
I hope fervently that you are never faced with such a situation, but if you are, like the pilgrims of old, you can find care and comfort with hospice.