When my husband's chemotherapy was no longer working, an oncology nurse connected me with Donna, whose husband had recently died of the same cancer. Some of the most helpful information I got came from her. I wished that someone had condensed end-of-life wisdom for me before he got so sick.
So I asked people who cared for family members dying at home what thoughts and tips they might offer. I also asked a few experts. Here are some of their observations. If you'd like to add suggestions, e-mail me at firstname.lastname@example.org
- Hospice is very helpful, but the aides - the people who do the hands-on work - are usually available only 1 1/2 to 2 hours a day. You may need to hire additional help.
- Ask home nurses and aides to teach you.
- Adult diapers aren't great. Plan on doing a lot of laundry.
- Learn about draw sheets and transferring before your loved one cannot stand or follow directions. Have a backup plan if a crisis occurs. To make a draw sheet, fold a flat sheet and place it under your loved one. You then can pull on the sheet to slide your patient or roll him on his side for diapering and washing.
- Hospital beds are surprisingly uncomfortable. And twin sheets don't fit them. You may need to buy extra-long or stretchy sheets or tuck in larger flat sheets.
- Thick-it powder thickens liquids to help swallowing. You can buy it at the grocery store.
- Pick a funeral home as early as you can stand to do it. Someone has to come for the body. It's no fun to shop at the last minute.
- The morticians take the body out in a body bag. Decide whether you want to see that.
Carolyn Cannuscio, 40, an epidemiologist at the University of Pennsylvania, helped care for her father, who died Dec. 6, 2008, of esophageal cancer at 66.
She wrote of the strain of caring for him in the Journal of the American Medical Association: ". . . I watched our family's collective collapse . . . At 3 a.m. we routinely met in the kitchen to swap over-the-counter remedies for our hurting heads and bodies. I fainted in my parents' bedroom. Most of us couldn't relax enough to swallow food, so we dropped from thin to gaunt.... We were functioning, but fragile."
Her entire essay is at http://jama.ama-assn.org/cgi/content/full/304/22/2452?ijkey=nmHdcNGi0KLGA&keytype=ref&siteid=amajnls
- Find a palliative care team early. She wishes her father had started hospice earlier.
- Assign family members roles that correspond with their skills.
- "I didn't know that when he was in bed 24 hours sleeping facing the wall that he was entering the dying process."
- "It was just so much more protracted than I thought it would be."
- Her father needed more help with his anxiety. "I remember the anxiety being one of the biggest components of the suffering."
What she learned:
- "My mantra when my dad was sick was 'Be present and open-hearted.'"
- Caring for her father at home was worth it. "It is truly a balm to look back and know that I spent that time with my family in an uncomplicated way, that I didn't let the rest of life interfere . . . In our culture that's so hard to accomplish."
With his sister's help, Matt Urso, 44, Newtown Square, an IT worker, cared for his wife, Dawn, who died May 8, 2010, of Hodgkins lymphoma. After a hospitalization for breathing problems, she was in home hospice for a week. Then Urso sent her to inpatient hospice for pain control. She died after a day.
Because his wife was on oxygen, he borrowed a generator in case the electricity went off.
"I purchased a wireless doorbell to use as a call button for my wife when she was alone in the bedroom. I would put the ringer near me if I was in another room and leave her the doorbell button within easy reach."
If you're dying, make your wishes known beforehand. Talk about the care you want, who will make decisions, your will, the funeral, the burial or ashes.
Andy Trackman, 52, Mount Airy, a business-to-business marketing manager for Verizon, cared for his wife, Michele, 53, who died of endometrial cancer, on Nov. 29, 2010. Her condition deteriorated rapidly after emergency surgery for a perforated bowel. She was in hospice about a month. An aunt helped him and he had home nursing.
On the physical demands of caregiving:
- His wife couldn't walk and was totally dependent on him. He got training on how to move her while she was in rehab after surgery. They had a mechanical lift, but it was still "very hard physically" to get her in a chair and load her into their van. "The physical wear and tear on me was pretty hard too."
- It made him angry when people said he should take care of himself. What was he supposed to say? "Honey, I know you're in pain, but I have to go to the spa now."
- "I realized I did need a lot of help. I didn't really know where I needed it or when. I knew I had to get my daughter to and from school. Mornings were always my wife's most difficult periods. I was always between a rock and a hard place. . . . It felt like I had to split myself in two."
- Dealing with people who wanted to help was stressful in itself. Many of his needs were unpredictable and last-minute.
- "People want to help and you want them to help, but how do you organize that? How do you get people to help you where you really need it?" He didn't need a fourth lasagna, but he could have used someone to do the laundry, take his daughter to school, or sit with his wife while he ran an errand.
What surprised him:
- He lost his ability to plan. "Every day, every moment was different. What worked one day wouldn't work the next day."
- "We both tried to keep our sense of humor. I think we did. There were a lot of very funny things that happened in the course of caregiving. That's OK."
Mary Gemmill, 72, a retired nurse in Hatboro, cared for her husband, Ken, 78, who died of lung cancer at home on Dec. 7, 2009. He was in hospice six weeks before he died. Their two sons took turns staying with her.
- She dressed him in a hospital gown.
- She liked the bed pads that were cotton on top and waterproof on the bottom. They wrinkled less, reducing the chances of bed sores.
What surprised her:
- He began withdrawing from social activities during the summer, well before his diagnosis in October.
- About three weeks before he died, he stopped eating things he liked, even cookies.
- "It was a very humbling time because people reached out to me and this was completely different to me. I'm always the one who reaches out."
- She couldn't sleep. He was agitated and his movements woke her. "It got to the point where I never put on a nightgown. I just was in sweats."
- Fluid collected in his feet. "His legs blew up from his knees down to his ankles." Later, his feet and legs turned purple.
What she learned:
- "I'm glad he was home. I was glad I was with him."
- "Your emotions are right up there on the surface. I would sit there and tears would just roll down my cheeks. I was like Niagara Falls."
- She also was able to laugh. "I could still laugh. Life does go on. I've often thought to myself, 'This is kind of normal. You're born. You live and then you die.'"
John Borges, a retired art teacher from Pennsauken, cared for his wife, Arlene, 66, at home until her last two days, when she was transferred to a hospital-based hospice. She died Dec. 19, 2010, of uterine cancer.
- She was diagnosed in June 2009. "We never talked about death. As far as she was concerned, she was not going to die."
- On one of her last days, he said he took her to the bathroom 50 times.
- "I go back to our wedding pictures and I wish I had done that more when we were married, to touch again all the love that was there that day, and I just wish I had brought more of that to the foreground as we got older because I look at the pictures and the happiness and the joy in those pictures and a lot of pictures as we progressed, I just didn't appreciate her, her beauty. I knew she had the greatest sense of humor. I knew she was intelligent. . . . I just should have appreciated everything about her."
Bob Cote, 63, of Fox Chase. His wife, Lorna, 62, died July 2010 of pancreatic cancer. Both were retired teachers. She had been diagnosed only the previous month. She spent half of her last month at home and half in in-patient hospice.
- He had to make elaborate schedules for her medications.
- "I remember cheering because she ate, like, a spoonful of pudding."
- His wife, who had a Ph.D., became confused, a common problem. "That part was hard because I had married her for her brain, and her looks."
- She was in constant pain. She was on a continuous morphine drip in hospice.
- "You're praying and you don't know what to pray for." By that, he meant he didn't know whether he wanted her to get better or go "someplace better."
Stuart Shafer, 49 of Northeast Philadelphia, a manager for a courier company, cared for his wife, Heidi, 49, who worked at George Washington High School. She died of inflammatory breast cancer on Oct. 17, 2009. He did round-the-clock care for almost a month, but transferred to in-patient hospice for what turned out to be her last few hours of life.
On exhaustion, a universal problem:
- "I discovered that being a caregiver is physically and emotionally grinding. It took quite a toll on me.. . . I was probably living on coffee. I felt like I swallowed a bowling ball, I had such a pit in my stomach all the time."
His practical suggestions:
- She wore a surgical bra that closed with velcro.
- She used a hand bell to summon him.
- He stocked up on latex gloves.
- He turned on talk radio shows when he had to be out of the room so she would feel less lonely.
- An egg crate foam pad can make the bed more comfortable.
- Use a waterproof mattress cover.
- A blender can turn ice cubes into ice chips, which help moisten a dry mouth.
Fran Barg, 58, a medical anthropologist at the University of Pennsylvania, has studied caregiver issues. Her father died of pancreatic cancer March 31, 2010, in a hospital in Pittsburgh. He was at home until the last two weeks. He was admitted to the hospital for a procedure and never left.
"The physical care was a real shock, just how hard it is to be alert all the time."
Her father would pass out. "We would be walking with him and he would just buckle." They tried to have chairs nearby at all times.
The distressing symptoms that precede dying - pain, trouble breathing and agitation - can be managed with drugs.
"I'm not sorry that he died in the hospital. As things rapidly progressed, they were better able to manage the symptoms of his dying."
Neville Strumpf, 63, a retired professor of nursing at the University of Pennsylvania, cared for her partner, Karen Buhler-Wilkerson, 65, who died of ovarian cancer in the hospital on Feb. 13, 2010. She was in the hospital the last 21/2 weeks. Strumpf and Buhler-Wilkerson wrote about their experience in Nursing Clinics of North America (http://www.nursing.theclinics.com/article/S0029-6465(10)00040-X/fulltext
- Let your care team help you anticipate problems. Ask, "When is it an emergency and I should call you?"
- She feared Karen falling. "I would have had to call someone to get her up. . . . Even if you know how to move them around, which I do, one person cannot move a helpless person around."
- Caregivers have to rest. "You cannot deal with this without rest."
- Try to give people who want to help specific things to do, like walking the dog. "Giving them something to do is a way to help everybody because the sense of helplessness is extreme not only for the person who's losing someone, but for everyone around them."
- The dying patient needs loose clothing that's easy to get on and off.
What surprised her:
- "I'm an insider and a nurse, and even I felt the death was much harder to observe and to deal with than I thought it would be." She had thought Buhler-Wilkerson would just "fade away." But the death was long, and Strumpf found it very difficult to listen to the labored breathing at the end and watch the "protracted suffering."
- During her partner's illness, Strumpf managed tube feedings, multiple IV medicines and many pain issues. "Even with my level of knowledge, I was completely bowled over by how much work that was."
What she learned:
- "People who have extremely serious illnesses may be too sick to be cared for at home or to die at home."
- Even with an advance directive and lots of advance talking, it's hard to tell when to give up. "That somehow it's an easy, natural line when you know 'This is it' is a myth." The decision to stop tube feeding was "really really hard."
Advice from experts
Karen Neyer, assistant program director at Cancer Support Community of Philadelphia (formerly the Wellness Community):
"People have this notion that they can't talk about the worst that could happen because if they're not positive then they don't have hope. You have to be able to prepare for the worst that can happen and then go on and plan on living."
People with cancer often make a transition quickly from functioning well, and having emotional issues be their primary concerns, to cascading toward death. Family members must then adjust so quickly that they're not prepared for the tasks of physical caregiving. "You're left with the feeling that you can't do it right."
Health professionals do a better job of thinking about caregiving problems with the elderly than they do with younger patients. "They just think, 'Well, you're young, you have means. You'll figure it out.'"
Rabbi Susan Kanoff, who leads bereavement support groups for the Abramson Center for Jewish Life.
Family conflicts are common. "Whatever people's personality issues are, they're really intensified when you're going through an experience like this. It's not really a time to change people."
Gretchen Swart, intake coordinator for Abramson Center. She took care of her father at home for one night before he died. He had come from a nursing home.
"I thought, 'Oh my God. How can I do a second and third and fourth night?' And look who I am. . . . One night of caregiving almost did me in."
"In terms of the medical side of it, the best way to approach it is to just treat every day as a new day. You'll expend a lot less energy planning for things that don't happen."
You can give someone an ice pop or lollipop if they're having trouble chewing or swallowing.
It's hard when family members swoop in from out of town and try to start making decisions. If possible, rely on the judgment of the person who has spent the most time with the one who's dying.
"I don't care what the resources are. You can be a good caretaker." Don't worry about doing things a specific way.
Richard Schulz, professor of psychiatry at the University of Pittsburgh, on the health impact of caregiving:
Alzheimer's disease is the most stressful for caregivers, but cancer is a close second.
People who did the hands-on caregiving before death recover more quickly psychologically than those who don't. Schulz said caregivers are more likely to see the death as a relief of suffering for both them and their sick loved ones.
Where do you put the hospital bed?
Tips from Karen Neyer, assistant program director at Cancer Support Community of Philadelphia and Lynn O'Brien, director of hospice for Abington Memorial Hospital.
- You'll need a room that's big enough for caregivers to work around three sides of the bed. You may also want to have a second bed for the caregiver nearby and chairs for visitors. In many homes, the living room or dining room makes sense.
- Things to think about: a bedroom is likely to be more isolated. This is good if a patient is agitated and needs less stimulation. Otherwise, other rooms may allow the patient to experience more of the life of the house.
- If the bedroom is upstairs, think about whether the caregiver can safely go up and down stairs repeatedly.
- How many steps is it to the bathroom? You may need a commode.
- Try to keep all your supplies nearby. Think about where the medications will be. If the patient is incontinent, how far do you have to go for another set of pajamas or sheets?
- Many people put a baby monitor in the patient's room.