Jaffrey

Coping with illness as patient, caretaker

Jaffrey couple shares the pressures and challenges of life with long-term health problems

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

    Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012. Purchase photo reprints at Photo Finder »

  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.
  • Kristin and Jon Camp of Jaffrey have had a steep learning curve in dealing with chronic  pain and illness, after Kristin was diagnosed with a spinal disease that causes chronic pain in 2012.

“But you don’t look sick” is one of the phrases that Kristin Camp of Jaffrey hears often. It’s one of the frustrations of living with what Kristin refers to as an “invisible illness.” But Kristin said she needs constant help to get through her day with the persistent pain that comes with the cysts growing along her spine and putting pressure on her nerves, which leaves Kristin’s husband, Jon Camp, with the responsibility of taking on some of Kristin’s care and keeping their household running.

Most people, Kristin said, will give sympathy and go out of their way to assist someone visibly ill or disabled. But Kristin’s disease doesn’t affect her much outwardly. If you were to look at the X-rays of her spine, however, it’s a different story.

Kristin was diagnosed in 2012 with Tarlov cysts, or sacral nerve root cysts. Tarlov cysts can be asymptomatic, but they can also cause debilitating pain in the hips, lower back, legs, feet or abdomen, nerve pain, weakness and cramping in the extremities, and pain when sitting or standing for even short periods of time. The cysts, or abnormal sacs filled with cerebrospinal fluid, are located all along her spine and are dilations of the nerve root sheaths. The presence of the cysts can cause significant nerve pain. Because the cysts are dilations of a person’s nerves themselves, they cannot be removed. Though first described by neurologist Isadore M. Tarlov in the 1930s, little is known about the causes of Tarlov cysts, and there are only a handful of doctors in the United States willing to attempt to surgically repair them.

The surgery is relatively new and does not guarantee success, as well as requiring that Kristin and Jon to travel, since so few surgeons will preform the surgery. It would be a significant expense that Kristin said she and Jon could little afford, with Kristin on disability and her husband retired.

In the meantime, though, that leaves Kristin with chronic pain, taking multiple medications and being treated for persistent pain at Monadnock Community Hospital, and leaves Jon in the role of caretaker.

“I can’t sit, I can’t stand, I can’t lift things, I can’t kneel down, it all causes pain,” said Kristin in an interview at the couple’s Jaffrey home last week.

Once, the two had enjoyed a very harmonious balance of chores. Each had pretty much seen to their own needs, said Jon, sharing cooking and laundry duties as well as the household cleaning. Now, virtually all of that has fallen to Jon, with Kristin’s chronic pain leaving her unable to lift anything heavy, kneel down, or even stand or sit for any amount of time without pain.

Kristin once doted upon her small gardens, which are dotted around the couple’s Jaffrey property. Now, she said, she cannot kneel in the dirt to plant or weed and, when she tries, her hands swell and ache too much to do more than a minimum of work. Now that, and all the yard work, falls to Jon.

It’s not just the fact that chores once evenly split fall all to him, said Jon. There are small things that are simply no longer possible. Some days, he said, even light, affectionate touches can hurt Kristin, so those are no longer a part of their daily interaction.

“What you would consider the simple little gestures, aren’t there, or are shall we say are given with a great deal of hesitation,” said Jon.

Kristin has found support for her disease through an online support group, where she can talk to people going through the same troubles. As she struggles with the decision of whether or not to go forward with surgery, she can talk to people who are also in the midst of that decision, or those who have already gone forward with the procedure. That, she said, is an immense help to her. But there is not much psychological support out there for caregivers, the couple noted.

“That would be nice,” said Jon, when discussing the existence — or lack thereof — of a support group in the area, specifically for caregivers. “A group of husbands or wives that understand. What I’d like to know is what are their secrets for becoming a caregiver overnight? How do they cope, what do they do? Tips, advice. Real-world advice. That would be nice.”

Adele Michaelides Thomas, a senior staff therapist at MAPS Counseling Services of Keene and Peterborough, said that stress on caregivers is a major concern in the community that relies so heavily upon them. MAPS holds two local support groups for those living with chronic pain or illness, said Michaelides Thomas, one for women and one a mixed group, but neither of them include a support structure for the caretakers of those people. The members of the group are aware of the stresses that caretakers go through, said Michaelides Thomas, and have even recently been discussing fears of what happens when their caretaker “burns out” or can no longer fulfill their duties.

Even though Jon is willing to take on the majority of the housework, he said he is aging, and things are not as easy as they once were for him, either. The couple will have to look at giving up their independent living situation much sooner than they ever anticipated, in order to accommodate for Kristin’s care, once he’s no longer able to physically keep up, he said.

Michaelides Thomas is currently planning to create a supplemental support group for caretakers of those with chronic pain or illness, and hopes to have it up and running by the end of this year or the beginning of 2015, she said, because it is a need that she doesn’t see filled a lot.

“It’s extremely hard to find,” said Michaelides Thomas. “We’re really lagging behind in support for that area.”

And there are things that a support group can offer caretakers, said Michaelides Thomas. Most importantly, it can help caretakers self-examine and reevaluate beliefs that can become entrenched when you are constantly looking after the welfare of another person — mainly that the caretaker is responsible for everything.

“We have to play with the existing belief that caregivers can fix everything,” said Michaelides Thomas. “No one can do it all. There are no Wonder Womans or Supermans.”

Support groups can also lessen isolation, help caregivers recognize when a burnout is approaching, and teach them coping skills to deal with their shifting roles from loved one to caretaker and back. Michaelides Thomas suggested that caretakers experiment with what they need to do to “refuel” themselves. Whether it’s a solitary walk, or sitting down with a silly sitcom, caretakers need to find something that allows them to step out of their role and settle back into themselves.

“Usually, people can name a few things, and then they go blank, which means they haven’t done enough experimentation,” said Michaelides Thomas.

And while support groups can be very useful, Michaelides Thomas also suggested that individual counseling can be useful for helping caretakers combat feelings of resentment towards the people they’re caring for. Though it’s a natural reaction towards the situation, it’s not a healthy emotion to keep bottled up, she said. “It’s natural to feel that way, but that can eat you up,” she said. “The caregiver doesn’t need that, the person being cared for doesn’t need that.”

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