Teach caregivers to provide better care
Teach caregivers to provide better care
Help family recognize its own needs and limits
Caring for the dying is an enormous responsibility. No one knows this more than the nurses, social workers, and chaplains who do it day in and day out as hospice workers. The presence of these hospice workers in the home is often a welcome respite for loved ones who must provide the bulk of the care.
But what happens in between visits? Often, the caregiver is left feeling isolated and overwhelmed. So it stands to reason that one way to ensure quality care in the absence of staff is to teach loved ones how to be better caregivers.
Few understand this better than Susan Miller, MS, the Alzheimer’s program coordinator for Sunrise Assisted Living Center in Wilton, CT. Her unique perspective comes not only from helping to train professional caregivers on how to care for Alzheimer’s patients, but also from knowing that she will need the help of nurses and social workers when her husband eventually moves into the latter stages of Alzheimer’s.
"When the time comes, I plan on using [training] resources." Miller says. "I have anger sometimes and even though I know it’s normal to feel this, I need someone to remind me. It’s a wonderful thing to know that you’re not going through this alone."
Elizabeth Pitorak, MSN, RN, CRNH, director of the Institute of Hospice of the Western Reserve in Cleveland and president of the Pittsburgh-based Hospice and Palliative Nurses Association, believes that a terminal illness is a family illness. "Hospice care uses an interdisciplinary team approach that must include family members as part of the team."
Better education, better care
Given that family members play such a pivotal role in caring for the dying patient, hospice staff need not only attend to the needs of the patient, but those of the caregiver as well. Attention needs to be paid to not only teaching caregivers the mechanics of caring for a loved one — how to give a bed bath or monitor instruments, for example — but also help caregivers recognize their own needs and limitations.
"The better educated the family, the better the care the patient will receive," Miller says.
According to Pitorak, staff should focus on the following areas to help family members become better caregivers:
• physical concerns;
• emotional needs;
• role and relationship of caregiver in the family structure;
• spiritual concerns;
• understanding of the dying process.
One of the major themes of hospice care is pain management. A focus on palliative care will go a long way in improving the quality of the remaining days of a patient’s life. While hospice workers understand this philosophy, family members and caregivers may not. Often, they are reluctant to administer pain medication out of fear of overdosing the patient or contributing to addiction.
Physical concerns
Hospice staff need to help caregivers accept that pain is a reality in their loved one’s life, and that pain medication is designed to improve the quality of life that remains, Pitorak says. Further, staff must stress the importance of keeping up with scheduled medication to avoid causing undue pain on the patient. As staff train caregivers on how to administer the medication, caregivers should also be told about the side effects of the medications being used to avoid surprises that could result in noncompliance or misuse.
"The object is to take the fear out by giving them the knowledge they need to feel confident," Pitorak says.
There are also physical concerns of the caregiver that staff must be aware of. A common concern is whether the caregiver is getting enough rest despite the round-the-clock duties of caring for the patient and tending to household responsibilities. It is often easy to focus primarily on the patient and miss the warning signs of a caregiver in need of care.
The best way to keep on top of caregivers’ needs is establishing a rapport with them, keeping lines of communication open, and showing not only a concern for the patient, but for the caregiver, too.
One of the roles a caregiver has is to help a loved one accept that he or she has a terminal illness. Patients often deny they are sick and avoid necessary treatments — medical or otherwise — that negatively impact their quality of life.
A caregiver must also be able to nurture loved ones to allow them to share their feelings about their situation, including their fears about leaving loved ones behind. In order to do so, caregivers must be able to discern the proper times to elicit open conversation and avoid communicating through heated arguments.
As patients are faced with their mortality, they begin to inventory life’s unfinished business, activities they have always wanted to do, or broken relationships they have long wanted to mend. Caregivers should play a major role in improving their loved one’s life by helping to tie up those loose ends.
But caregivers cannot attend to the above tasks if they are not on a solid emotional foundation themselves. In order to empower caregivers to be supportive and attentive to the needs of the patient, hospice staff should attend to the emotional needs of the caregiver.
This begins by assessing the caregiver’s ability to cope, says Pitorak. It is common for coping abilities to be deteriorated by the knowledge of a loved one’s terminal illness. Staff should assess the caregiver’s knowledge of the disease. The ensuing discussion will likely yield insight into the fears and expectations of the caregiver and offer signs of anxiety and depression that must be dealt with.
"Help them cope," Pitorak says. "Empower them by helping them re-identify coping mechanisms."
Roles and relationships
Emotional needs are effected in part by the roles and relationships caregivers and patients play in the family structure before and after the diagnosis. For example, what seems like denial may be the patient’s attempt to protect loved ones from what is really happening. The caregiver needs to be able to reassure the patient that they are willing to listen and talk about all aspects of the illness, despite how difficult it may be for both parties. This should help the patient get past this form of protection and allow them to prepare for their own death, says Pitorak.
Often what triggers fear and anxiety among dying patients is the thought of leaving behind a spouse or family that is unprepared to carry on after the patient dies. An elderly man who handled the family finances could fear that his wife will founder financially; or an elderly woman who prepared all the family meals may be concerned that her husband will starve with no one to cook for him.
In order for both sides to gain peace the two sides must talk, and that can be facilitated by staff. Both caregiver and patient need to be able to tell each other what their fears are. If, for example, the issue is self-sufficiency of the survivor, then the hospice staff should help both sides address their concerns. If the wife fears her husband will not be able to prepare his own meals, the hospice worker should work with the husband to devise a plan that will ultimately improve his cooking skills, which should be demonstrated to his wife.
"In order for the patient to have peace, you have to teach the caregiver to be self-sufficient. Encourage the caregiver to care for themselves," Pitorak says.
Professional caregivers must also help family caregivers work through important family issues. Patient and caregiver, for example, may disagree on issues such as when, how, and what to share their feelings
"Be there to let them," says Miller "Let them vent. Let them know that feelings of guilt or anger are all normal feelings."
Hospices workers can help facilitate the resolution of outstanding issues by:
• Getting caregivers to openly explain their needs.
Caregivers need to be taught that their feelings and needs matter and that they should feel as if they can ask the patient to do something that will make their lives easier or their caregiving responsibilities more manageable. For example, it is not unreasonable for a caregiver to ask a loved one to give notice when any pain arises rather than wait until it becomes so severe it creates a conflict between caregiver and patient.
Teach caregivers that conflict resolution does not always mean that everybody ends up happy. Remind them that conflicts are resolved through compromise, a fact they may have forgotten under the strain of dealing with a terminal illness.
• Stressing to the caregiver that the patient should make as many decisions as possible.
A good example of letting a patient make decisions is when adult children living some distance away from the patient want to move him or her into a nursing home. Although a move to a nursing home may make the adult children feel at ease, it may not be what the patient wants. If the patient understands the consequences of his or her decision to remain at home, including the absence of a caregiver at home, the children should accept the patient’s right to make that decision. Family members need to be told that taking away their loved one’s ability to make decisions can undermine his or her feelings of control, which can interfere with the person’s ability to deal with other aspects of his or her illness.
Another source of conflict can be unattended spiritual needs. Patients are not always forthcoming about their questions of faith or place in the universe. Hospice workers are trained in trying to get patients to express their spiritual needs, but often it is the caregiver who prompts the discussion that leads to the patient seeking a hospice chaplain or their own clergy.
Spiritual concerns
The first step in meeting patients’ spiritual needs is training caregivers on what spirituality is, given its very broad definition. In some cases, the caregiver may be deeply religious, while the patient is not. Hospice caregivers need to train family caregivers in what spiritual care actually is, including that it does not necessarily involve religion.
Teach caregivers to share not just their faith with their loved ones, but their uncertainties as well. This will help them understand their own relationship with those around them, a higher being, and possibly reconnect with beliefs they held before their illness, Pitorak says.
Teach caregivers that listening is the most important thing they can do to help, including letting the patient know that he or she is willing to discuss spiritual matters when the patient is ready. Help the caregivers understand their limitations. If the caregiver finds it difficult to listen to the patient’s concerns, then the caregiver needs to be able to call the hospice chaplain or their own clergy to help the patient work through their spiritual concerns.
Hospice workers need to be concerned about the spiritual needs of the caregiver, as well. Caring for a loved one who is dying often brings up very difficult issues, including questions about fairness, fear about the future and other universal questions.
Just as the caregiver tries be available, so should hospice workers. While this is not a new concept, Pitorak says with the emphasis placed on the patient, it is easy to forget about the needs of the caregiver. And without addressing the caregiver’s needs, the caregiver will have difficulty helping the loved one to sort out through his or her spiritual concerns.
Finally, caregivers need to be educated about the dying process, says Pitorak. She recommends giving caregivers a sheet with the list of signs and symptoms that the patient is preparing to die. This will help caregivers prepare themselves.
Signs, such as loss of appetite or refusing to take liquids, are often misinterpreted by caregivers. In their attempt to care for there loved ones, they force foods or liquids on the patient, believing they need it when they are actually signs of the body shutting down. Rather than making the dying process peaceful, the caregiver is doing the opposite.
"When a loved one stops eating, it’s the hardest thing to accept," Pitorak says. "Caregivers need to be told what the signs are and understand that allowing the dying process to take place is not giving up."
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