Meet 3 Chronic Pain Caregivers

When you love someone living with a chronic pain condition, your life changes too. Three family members share their side of the story.

Taking care of a loved one who is living with pain can be stressful, and many caregivers are coping with higher than usual levels of depression and anxiety, along with a compromised immune system and a decline in overall health.1 Here, three caregivers talk about what it’s like to be taking care of someone close to them who is living with chronic pain.

Image: iStockPressure and frustration can build up; it's important for caregivers to take time for themselves as well.

Meet Joe: Husband Turned Chronic Caregiver

For more than a decade, Joe Aiello of Massachusetts has been the primary caregiver for his wife, Mary, who has a spinal disorder called arachnoiditis. In this condition, symptoms such as severe stinging, shooting pain and muscle cramps in the back keep Mary in her bed for most of the time. The condition, which she came down with after having back surgery as a teenager, is incurable, so Joe is responsible for her day-to-day care (more on arachnoiditis).

The couple met as teenagers at a mutual friend's party; Mary's chronic condition came on slowly and they hoped that it may resolve over time. Unfortunately, that hope didn't pan out. Several years later, Joe shares that, “Most days, she is in bed all day and she can’t do anything much.” Having worked in IT, Joe lost his fulltime job and now works as a contractor. “At times, I feel pressured to rush home after work and get her some food because otherwise she may not eat all day. On bad days, it takes all her energy just to get to the bathroom.”

The couple has two grown children who help out when they can, but Joe doesn’t want to impose on them too much. He has tried hiring a personal care assistant to help Mary for when he is not home, but they are extremely expensive. “While some are exceptional, we have not had good experiences with all of them,” he says.

Once he arrives home after work, he tries not to leave the house again because he worries that Mary could hurt herself trying to get around. “I figure that the less she hurts herself, the less she will be moaning in pain,” he says.

On a regular basis, he has to get his wife into the car to visit her doctor and get her pain prescriptions renewed. Other than that, she does not get out of the house very often.

More recently, Joe began getting support from Well Spouse, a support group for individuals caring for an ill spouse, and found it very helpful. “I was going to some of their events and it was good to talk to people in my situation,” he says. “The Spouse-Only Respites they schedule are life-saving.”

Mary’s pain occurs worst in the morning, so Joe tries to stay home until he gets her situated for the day. “We live our lives in our bedroom,” he shares. “Maybe two or three days a month, we are in the living room. She has had this condition for so many years, and it isn’t going to end anytime soon.”

Taking care of a loved with chronic pain can be a massive undertaking. Three family members share their story. (Image: iStockPhoto)

Meet Roberta: Managing as a Patient and a Provider

Roberta Luna of Orange County, in California, knows what it’s like to be both a caregiver and a patient. Diagnosed with pancreatic cancer at the age of 45 some 17 years ago, she has lost several family members to the disease. Incredibly, both her mother and her father were diagnosed with the deadly disorder, and her father passed away shortly after his diagnosis. He had been six feet one and 175 pounds but had dropped to 70 pounds at the time of his death, Roberta recalls. Meanwhile, her mother was diagnosed with pancreatic cancer in 2005 and shortly after that, she came to live with Roberta and her husband. “We wanted to be able to help her and she survived for eight years,” recalls Roberta of her mother, who died in 2013. “She did chemo, but then she told us that she wanted to just enjoy the time she had left and not be sick all the time.”

Robert’s mother was in pain from her illness but didn’t want to take a lot of pain medication, so Roberta tried to just be there for her and to find non-medication alternatives. “My mother lived with a lot of pain but she never complained,” she recalls. “She didn’t like to take narcotics. Instead, she would ask me for a heating pad.”

In addition to keeping the heating pad nearby, she tried to prepare warm foods that would make her mother feel better. Both her husband and their sons helped out with the care of her mother after she came to live with them.

As her mom’s primary caregiver, Roberta at times felt that she was under a lot of stress. She turned to yoga and meditation when she felt frustrated about not being able to completely get rid of her mother’s pain. “Sometimes I would just go outside and sit there and take a break for a few minutes,” Roberta recalls. “My husband was very helpful and if he knew that I needed the time, he would help with my mother so I could have a break.”

Meanwhile, Roberta herself had been diagnosed with pancreatic cancer in 2002. While her tumor was inoperable, she was able to participate in some clinical trials and now, nearly 17 years later, is doing well. “In dealing with pancreatic cancer, we don't usually use the word ‘remission,’ and generally we would say no evidence of disease,” she says. “But in my situation that isn't the case. I still have my tumor, as it is inoperable.  At this time, I'm lucky in that I haven’t had chemo since December 2018, but that is subject to change at any time based on my test results.”

Over the years, Roberta has learned that being a caregiver means taking care of yourself, too.

“If you don’t take care of yourself, you are no good to the person you are trying to help,” she says. “It’s important to be aware and to take care of yourself. Find whatever moments you can to take a break.”

Meet Janis: Taking it One Day at a Time

Janis Lorio, who lives in Metairie, Louisiana, has been caring for her husband, Jules, who is 72, since he was diagnosed in January 2013 with Parkinson’s disease. “His body is very stiff and rigid, and it’s difficult for him to move,” she says. “Since he got sick, I’ve needed to adjust to a pretty much consistent set of responsibilities that I never have before.”

Describing their marriage as “old-fashioned,” Janis says that she once took care of the cooking and cleaning and held down a fulltime job. She taught third grade for 17 years and then worked in the children’s department of the public library for 13 years. Jules worked for a brokerage firm, where he was the head of compliance, and did all the odd jobs around the house. The couple has no children.

“I have continued to do what I have always done but now even more,” Janis says. “It is hard waiting for the next thing, wondering what I am going to have to do next. He still tries to help, but his fatigue and discomfort are especially frustrating.”

Calling his illness “a blessing” because its onset has been so gradual, Janis says that she has gradually grown used to caring for her husband. He seems stable at present, and his medications have recently been tweaked. Currently, she makes sure he takes all four of his medications.

To take care of herself, she goes to exercise classes several times a week. The couple also belongs to a support group for people with Parkinson’s disease at their local hospital. But Janis admits that she worries.

“What is hard for me is the fear of the unknown,” Janis says. “It is this fear of, what happens to him when something happens to me? I can do this today, but what about tomorrow? But I just can’t worry about what is going to happen. I have to manage.”

Being a caregiver has its challenges, but many caregivers draw support from one of the many organizations that are meant to make their lives easier. If you are a caregiver, here are some resources to check out:

  • Caregiver Action Network offers tips for caregivers, instructional videos, and access to a helpline (855-227-3640).
  • Well Spouse Association. This group provides help to people who are caring for an ill spouse. On their website, which says, “When one is sick… two need help,” there is information about telephone support groups, respite weekends, face to face support groups, and a bimonthly newsletter (732-577-8899).
  • National Alliance for Caregiving offers a variety of resources for caregivers (202-918-1013).
Updated on: 02/06/20
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