New burden at stressful time causes problems
One of the major challenges of providing hospice care is working with caregivers who typically have received no training in the role. "They don’t plan for caregiving, and most of the time the caregiving comes at the most stressful time in their lives," says Jeanette Denson, director of Custer Care Center in Broken Bow, NE. "They’re not prepared ahead of time, so that puts a strain on the caregiver," she says.
Understanding how the stress of suddenly becoming a caregiver can affect a hospice family is a key aspect of hospice care, but it entails knowing some of the common types of caregivers and what their particular challenges might be, Denson notes.
Denson provides these tips for dealing with various caregivers:
• Daughters/sons: Generational differences often are the source of conflict in families in which a parent is dying and is being assisted by a daughter or son, Denson says.
Modern waste vs. Depression-era thrift
"They’re required to go in and help with their parent, but they don’t do things the same way the parent does," she explains. "I see my generation as more of the throw-away generation than the generation before us, and that causes some struggle in families."
For example, the hospice patient might be from the Depression-era generation in which nothing is thrown away or wasted, while the child tends to throw out used plastic bags rather than washing them out, Denson says.
The role of hospice is to teach caregivers that they’ll need to make some allowances for how the patient expects things to be done in the household, she says. "If saving plastic bags is the thing that makes the person you’re taking care of happy, and if it’s a big thing to that person, then you may have to do that for the person," Denson says.
Some battles are not worth fighting, and it’s important for hospice staff to teach caregivers this principle, she notes. For example, if the hospice patient refuses to walk with a walker and wants to use a cane instead, then even though the caregiver is correct in assuming this is less safe, it’s better to let the patient do as he or she pleases, Denson says. "Each person has to be validated from where he or she is," she adds. "I think the hospice nurse has to look at where each person is at that point, acknowledge that both are right, and try to help the other one understand where they are."
Sometimes traditional power structures within family relationships are altered because of the caregiving situation. The parent who formerly always made the decisions now is forced into a more passive role, and the adult child is thrust into an unfamiliar decision-making role, Denson says.
How do you handle role reversal?
"It puts bigger stress on the child," Denson says. "I know this from personal experience. I was trying to take care of my mother, and she has always been the one to tell us what she was going to do and how she was going to do it."
This role had continued long past Denson’s childhood, and it led to problems when her mother needed her help later in life, she says. "A mother might say, I would like you to come over because I just need a little help right now,’" Denson says. "And this reminds us how when we were growing up we felt like we had to do too much work for our mother, although now we’re normally not helping her out very much."
While the roles now are different, they still could bring back old feelings, and these can surface during hospice care, Denson adds. "The hospice staff can see the dynamics of the family and talk about how it was before with them," she suggests.
Adult children who are caregivers typically have families and jobs of their own to handle in addition to the care of the dying parent, so hospice staff can help caregivers out by finding volunteers to assist them, Denson says.
• Pre-Baby Boom husband: Men of this generation might have been accustomed to the wife doing all of the caregiving in the marriage, so the role of caregiver can be a shock and an uncomfortable change. "You need to find out what things the man has done before as far as helping the wife," Denson says. "Does he know how she did certain tasks?"
Also, hospice staff might need to help the wife understand that just because she has always done things a certain way, they don’t always have to be done that way, especially now that her husband has taken over the household chores, Denson says. "Men seem to find easier ways of doing things, maybe finding a shorter route to accomplishing a task," she says. "And I think hospice nurses have to help them deal with how the task is being done."
The most important thing is that the hospice patient is being cared for, and the details are not as important, Denson notes. "If the bed’s not changed every week, it’s not going to matter," she says.
Likewise, the wife who is a patient will need to learn that she has to give up her longtime role as caregiver and allow her husband to take over the role, Denson adds. "That’s difficult, because we as women seem to be martyrs, and it can only be done the way we do it and by us," Denson says. "In the [older] generation, women would be more willing to do things regardless of whether it caused them pain and suffering."
Looking beyond traditional relationships
• Pre-Baby Boom wife: Financial issues are one of the biggest burdens experienced by women of this generation who become caregivers of a dying husband, Denson says. "The women often are not used to handling financial issues," she says.
Other issues include driving, because often the wife has not done much driving, and taking care of household tasks such as taking the trash out, Denson says. Sometimes hospice staff might help find solutions to these situations by finding the caregiver another family member or a volunteer who can take care of the tasks that don’t come as easily to her, such as cleaning gutters, Denson says. "We have to look beyond the traditional relationships," she says. "In that generation, they didn’t always ask other people to do things for them and they took care of it themselves, so we need to show them it’s okay to ask for help."
• Parents of adult patients: This is one of the more difficult caregiving roles, because it’s easy for parents to fall back into the pattern of treating the adult child as though he or she is a child again, Denson says. "Are they allowing them to do things that are functionally possible?" Denson says. "There needs to be some acknowledgement of independence and making decisions."
In these cases, the hospice nurse might be able to help the parent caregiver know that there are some things the patient can continue to do on his or her own and that the parent doesn’t have to do everything for the patient, she adds.
• Sibling caregivers: When siblings are caregivers to each other or sharing the role for a parent, there are rivalries and other issues that might arise, Denson notes. Sometimes it’s difficult for siblings to decide who will handle which aspects of the caregiving, she says. "One person is here, and somebody else lives miles away, but when that person comes back to visit, he might say, We should do it this way,’" Denson explains. "And that ruins how everybody is feeling and how they view the experience."
Another common scenario is when the long-distance sibling feels left out of the care decisions, Denson says.
Hospice staff could help smooth out these problems by helping the siblings decide on particular roles for everyone so no one feels left out, she suggests. For instance, perhaps the long-distance sibling could agree to call the patient on Sunday nights, which would allow the sibling who lives nearby to take that evening off, Denson says. "When hospice staff acknowledge everyone, whether they live a long ways off or not, then it helps," she says. "The family will say, It was so nice that I could talk with the hospice nurse, and the hospice staff kept me informed.’"
Along with siblings, hospice families need to acknowledge the potential for grandchildren to participate in caregiving, Denson notes. "I just listened to a lady who was talking about how important it was that the grandchildren understand death and what’s going to happen before and after," Denson says.
Perhaps one of the best ways hospice staff could help caregivers is by showing them the joys of caregiving for a dying family member, she says. "People think about caregiving as a burden, but there are lots of rewards to caregiving," Denson says. "All of a sudden you’re going to be spending quality time with people you may not have spent time with in a while, and you’ll hear new family stories."
Caregivers, whether they are spouses, children, or parents, will learn new things about the family member who’s dying, and they might be able to engage in new activities with the person, Denson says. For example, if the hospice patient is able to get out for a ride, that’s a good opportunity to have a talk and do something spontaneous, she says.
In one hospice family, the father was always the domineering, macho sort of man who never showed his softer side, Denson recalls. When the man was dying in hospice care, he and his caregiver wife began to bird-watch, something he’d never done before, she says. "When he died, she said she wanted everyone to know he had been a tough guy, but he also was a bird-watcher," Denson adds. "At the end of his life they did things they hadn’t done before."
One of the major challenges of providing hospice care is working with caregivers who typically have received no training in the role.
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