The Caregiver's Perspective: Coping, Fear, Anxiety, and Resentment
Coping Advice for Caregivers
Watching a loved one in pain can leave you feeling helpless and stressed. Read how hospice offers pain management for patients and coping advice for caregivers.
By Dennis Thompson Jr., HealthDay News
Medically Reviewed by Farrokh Sohrabi, MD
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Walter Michaelson, 60, hadn't been feeling well for a few months. As time wore on and doctors worked to figure out what was wrong with him, the Homosassa, Fla., resident's pain increased to the point that it was almost unbearable.
A diagnosis of terminal lung cancer was difficult to hear for Michaelson and Catherine Gozdziewski, 59, the love of his life, but it opened the door to hospice coming in and relieving his excruciating pain, Gozdziewski said.
Pain management is an integral part of hospice care, which aims to provide comfort during a patient's remaining months. Having hospice care eases the burden on caregivers who may be stressed by their loved one's agony yet nervous about the intricacies of pain relief.
For instance, according to a survey published in the Journal of Pain and Symptom Management in 2013, caregivers often worry about whether they're giving too much or too little pain medication. They can become frustrated about their own ability to correctly assess their loved one's pain and even to talk about that pain with doctors, nurses, and hospice workers. Caregivers rated their understanding of and comfort with pain medications at an average of 8.5 out of 10 and their personal knowledge and skills related to pain management at 7.8 out of 10. But they gave their hospice team a 9 out of 10 regarding management of their loved ones' pain.
Dealing with concerns over medication is indeed a big part of the offered coping advice for caregivers by hospice workers, said Jeanne Dennis, senior vice president and director of the Visiting Nurse Service of New York Hospice Care.
"People are afraid sometimes because these doses are big, because the pain is big," Dennis said. "The physicians trained in hospice care know what it takes to keep the pain below the surface. We don't like what we call breakthrough pain."
Right now, Michaelson is taking just enough medication to stave off most of the pain while allowing him to remain lucid. "I've still got a little bit of pain, but I don't want to take any more than what I’m taking," he said.
In fact, his lung pain has been well enough controlled through hospice that he was able to indulge his passion for sport fishing with his buddies. "It was a bit much for me toward the end, but I fished a good six hours," Michaelson said. "I hope we can go out again."
Effective pain relief allows patients to focus on the truly important things, said David McGrew, MD, chief of medical services for HPH Hospice, the Hudson, Fla., group providing Michaelson's care.
"There's dying well, and there's not dying well, and not dying well is having life consumed by distressing symptoms and not being able to take care of important emotional and social issues, financial affairs, and maybe even bucket list items if you are up for them," McGrew said.
For Gozdziewski and Michaelson, hospice has afforded them time to reflect on their long life together. They've known each other since they were teenagers, and they raised five daughters during 28 years of married life. Though they had divorced, they started living together again two years ago. "We were going to get remarried, and then we got this news," said Gozdziewski.
She explained that it's very important for her to let Michaelson have as much control over his life as possible. She manages his medications, but he makes the decisions about how much to take.
"The girls will say, 'It's cold out there, you should come in the house,' " she said. "I say, 'Let him make as many decisions as he can.' "
However, there's still an important role for caregivers to play within hospice. Another piece of coping advice for caregivers is to speak up if they feel their loved one is in too much pain, said Donald Schumacher, PsyD, president and chief executive of the National Hospice and Palliative Care Organization. "Even though your doctor might be doing a good job, it's good to have someone step in and give their observations about what might be helpful," he said. "Don't wait too long to reach out for help, because no one should be living in pain at this moment in their life."
Gozdziewski said that Michaelson's hospice workers are doing a wonderful job managing his pain. "Originally, he wasn't tasting food," she said. "Since he's been on hospice, he's gotten his appetite back, which is amazing, so he's been eating a lot. Without pain medication, forget about it. He would never be able to."
Getting the pain out of the way will allow you to follow Gozdziewski's most important piece of coping advice for caregivers: Enjoy your remaining time together. "You really know what living a day at a time is like, and live each day to the fullest," she said.
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