Chris Cummins sits on the floor, cross-legged, facing his wife Cindy in the recliner where she spends most of her day. With her right hand, she strokes her Chihuahua, Porscha, snuggled in her lap. Lining the wall near the chair is a pile of …
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50 — average age of a caregiver
3.7 years — average duration of care provided
86 percent — care for a relative
60 percent — perform medical or nursing tasks, most without formal training
38 percent — provide care for more than six years
60 percent — are employed outside of their caregiving role
63 percent — provide for someone with a physical condition
30 percent — assist someone with memory problems
60 percent — assist with one or more daily activity, such as bathing or feeding
Source: Colorado Health Institute
Many caregivers risk being overwhelmed by the many responsibilities and stressors associated with taking care of a loved one. Following are some of the symptoms indicating that a caregiver is under pressure:
• Role fatigue — being an employee, parent, spouse and caregiver all at once takes a toll on an individual’s mental and emotional health. Remembering that you can only do so much, and remembering to take care of yourself, can help prevent fatigue.
• Economic pressure — paying bills, understanding and managing health insurance paperwork and dealing with potential losses of income can be extremely stressful. Budgeting and being aware of exactly what health insurance does and doesn’t cover can reduce stress.
• Grief — caregivers may grieve their loved one’s inability to care for themselves, or the functional loss of a family member even while they are still alive. Realize that this is natural and can last for years after the loved one has died.
• Isolation — Caregivers may feel closed in and shut off from the word as they spend increasing amounts of time with a loved one they care for. Reaching out to support groups, family members or friends to confide in can help the caregiver remain socially and emotionally connected.
Source: Caregiver Support Services, 2016
• Make time for your own interests and hobbies — don’t stop doing what you love.
• Spend time away from one another. Keep in touch with cell phones.
• Talk to each other. Be honest about your feelings, frustrations and fears.
• Forgive each other, and yourself, for hurt caused during heat of arguments or disagreements.
• Seek out support groups to share experiences and counseling sessions when needed.
For more information on support, preventing caregiver burnout and services available to caregivers and their families, contact:
• Family Caregiver Alliance: caregiver.org
• Caregiver Support Services: caregiversupportservices.com
Chris and Cindy Cummins’ situation may be unique for married couples in general, but according to caregiving specialist Dr. Eboni Green, the stress and strain on their marriage is typical when one spouse becomes a primary caregiver for the other.
“You’re never prepared,” Green said. “When it’s a long-term, degenerative process, there’s no path, there’s no road map … You’re constantly on edge with regard to changing needs, changing doctors and becoming an advocate for your loved one.”
Green, a registered nurse with a doctorate in healthcare administration, co-founded Caregiver Support Services in Omaha, Nebraska. She devoted her career to the subject after becoming the primary caregiver for her father-in-law as he battled and ultimately died of cancer.
Marriages, she said, face unique challenges when a loved one takes charge of providing medical, emotional or even legal care for a spouse.
Established routines and responsibilities change, which can be unsettling for both partners. Intimacy changes from making love to bathing and dressing. Underlying tensions that may have existed before the diagnosis become magnified by being together almost constantly.
“You’ll have someone say, ‘I just want to be the husband,’ ” Green said. “They’re feeling on edge, they’re feeling as though they just can’t do it anymore … Then they feel guilty for feeling this way.”
Before a spouse gets to that point, it’s critical for them to recognize those feelings, and to reach out for help, Green said.
Hiring a housecleaner or grocery service, if it’s feasible, can lighten a caregiver’s load. Finding in-person or online support groups, or simply having one person — a friend, neighbor or relative — to confide in, is crucial.
“Just having the opportunity to say what they are feeling is really important,” Green said.
Multiple sclerosis is a disease affecting the central nervous system, but is difficult to diagnose because it affects people differently. It is referred to as an immune-mediated disease since the person’s own immune system attacks the central nervous system. A specific cause is yet unknown, but it is thought that environmental factors, combined with a genetic predisposition, may be to blame.
Most people affected by the disease are diagnosed between the ages of 20 and 50 years old, including 11,000 people in Colorado and Wyoming alone. One in 500 Coloradans has MS, and 73 percent of those diagnosed are women.
• Problems with balance and walking
• Visual impairment
• Vertigo and dizziness
• Cognitive and sensory issues
For more information on MS or assistance from the National MS Society, go to cureMSco-wy.org or call 800-344-4867.
Source: National Multiple Sclerosis Society, Colorado-Wyoming Chapter
Though the stresses of providing care for loved ones can be great, here are a few ways to ensure a caregiver doesn’t succumb to the stresses of the role:
• Autonomy — Anyone being cared for should be allowed to make as many decisions and perform as many routine activities as they safely can. Being able to dress, feed, bathe or perform other tasks, when possible, allows the individual to retain his or her dignity and decreases stress for the caregiver. It is also important to listen to the person being cared for with respect and honor their decisions as much as possible.
• Consistency — While everyone will have good and bad days, maintaining regular routines and providing reliable care to a loved one will reduce stress for both parties.
• Outside interests — Both caregivers and the loved ones they care for will thrive if they can maintain hobbies and interactions separate from one another. Day centers or other groups may be available for the person being cared for, or they may be able to partake in independent activities. Caregivers will return to their role refreshed if they can leave their duties completely behind temporarily to enjoy a hobby or time alone.
• Flexibility — Adjust expectations and allow room for improvement with providing care, decision-making and interacting with the person being cared for. Power struggles and stress can result when routines are rigid or when the caregiver tries to do everything themselves. Remember that the loved one is worthy of your care, and expect that some tasks won’t be resolved as you would like.
Chris Cummins sits on the floor, cross-legged, facing his wife Cindy in the recliner where she spends most of her day. With her right hand, she strokes her Chihuahua, Porscha, snuggled in her lap. Lining the wall near the chair is a pile of Cindy’s shoes, some with lower leg braces attached, others with duct tape on the soles to prevent her from slipping.As Cindy leans forward, Chris guides her to the nearby walker, then walks just behind her, his hand resting softly on her back. He stands beside her as she positions herself on the stairlift that takes her upstairs to the bathroom — there’s none on the first level. And he waits just outside the bathroom door until she re-emerges.Then they repeat the movements in reverse, a choreography synchronized with repetition and time.Cindy, 61, settles into the recliner and Chris, 64, embraces her feet with his hands, gently placing them in a comfortable position on the leg rest. He moves to the couch, always within 10 feet of his wife.She sighs.“This wasn’t how we planned to spend our retirement together,” she said.Since they first met, the couple, now married 36 years, has felt a profound closeness. But Cindy’s 2005 diagnosis of multiple sclerosis, a degenerative neurological condition that progressively robs victims of their motor skills and shortens most victims’ lives, sent them on a journey that altered their relationship — at times for worse but, in the end, for better.As the illness progressively robbed Cindy of her independence, and Chris took on the role of primary caregiver, they learned to meet in the middle, work out the challenges that could have ended their marriage, and find a way to deeper love.‘I saw her standing there’Cindy and Chris met in 1980 at an “Orphans’ Easter,” a gathering of transplants to Colorado spending the holidays away from their families. Cindy’s sister, Chris’ co-worker at Mountain Bell, hosted. Cindy was sitting on the couch when Chris, carrying a salad, entered the room.“We looked at each other and we both had a tingle,” Cindy said, her smile suggesting she can still feel the electric sensation.“I looked across the room and it was like that Beatles song, how does it go?” Chris said. "I saw her standing there."They took a walk around Sloan’s Lake to end their expatriate holiday, and Chris called his parents that night to say he’d found the woman he was going to marry. They had their first date two weeks later at the People’s Fair in downtown Denver and didn’t waste time getting to know each other better.Cindy, a small-town Nebraska girl, was smitten by a man who introduced new experiences. Chris took her roller skating for the first time. They saw “The Rocky Horror Picture Show” and John Waters movies.In Cindy, Chris found a muse who exuded compassion and whose creativity inspired his own.“She was very creative and talented and giving,” he said. “It’s a very inspirational thing to have someone around like that — it’s like a well you draw from.”They ate Chinese food, had long conversations and created art together. Cindy made quilts, an average of 25 a year. Chris played harmonica and wrote short stories.It didn’t hurt, Cindy added, that they were both hot to trot.“We were easy,” she said with a devilish grin and a sidelong glance at Chris’ reddening face. “It was a lot of fun.”Chris asked Cindy to marry him two weeks after their first date, while he was battling a bout of strep throat. Cindy chalked the cheeky proposal up to a fever and waited almost a year before taking him at his word. They married in 1981 and bought a home in Edgewater.Two children followed, Courtney, now 30, and Cody, now 25. Chris did accounting and consulting for Mountain Bell and Cindy ran a day care center from her home before working in school cafeterias at Northeast Elementary in Parker,then Chaparral High School in Parker. They moved to a bigger house in Arvada, then Parker. Life was good.Then came Cindy’s 2005 diagnosis.‘Something was really wrong’The symptoms were dismissed at first. Cindy began having what she calls “zingers,” intense, shooting pains traveling from her hips to her feet. Bouts of vertigo came and went. Her vision worsened to the point she stopped driving after dark. Her left leg began to drag.For as long as she could, Cindy kept up her job in the cafeteria at Chaparral High School, working the cash register to avoid the chance of dropping trays of food. At the end of the 2005 school year, realizing she wouldn’t pass the 50-pound lifting test to return to work in the fall, she resigned.Soon after her resignation, on a visit to Nebraska for her parents’ 50th anniversary, Cindy could barely get out of the car.“Everybody could tell ...” Chris said as Cindy finished his thought, “... something was really wrong.”The zingers continued, and bouts of vertigo became severe. Cindy’s eyesight grew even worse. She went to an ophthalmologist at Walmart for glasses, but he told her to talk to her doctor instead.She did. And after a series of tests, the diagnosis came back as multiple sclerosis. Intially the couple took the news well.“We were so thrilled that it was MS,” she said.Cindy’s aunt had died of a brain tumor after experiencing similar symptoms with her vision. Cindy and Chris were relieved to find out she was cancer-free.“We were feeling optimistic that whatever it was, we would get over it,” Chris said.Not long after the diagnosis, Cindy’s family in Nebraska called — her father had fallen and was dying. But Cindy was too ill to make the trip.“I so resented MS then,” she said. “I couldn’t be there to give my dad a hug when he really needed one.”“I think I was in denial” before, Chris said. “Then when you realize something’s damaging your spouse’s nerves, you know it’s going to get really nasty.”‘I felt like a single mom’Within a few months, Cindy was largely homebound. Chris took on additional roles: nurse, chauffeur, personal assistant, housekeeper.As their new reality took shape, being the breadwinner and coming home to his “second job” took a toll on Chris. But he had made his wedding vows: “in sickness and in health,” and he was going to stand by them.“I felt like a single mom,” he said. “I would work all day, then when I was done with my job I’d have to shop, clean and do laundry, cook … then you lay your head down and worry that (she’s) going to fall at three in the morning, which happened. You find yourself not sleeping.”Chris’ patience eroded from a combination of work-related fatigue and attending to Cindy’s medical needs, not to mention the paperwork, appointments and phone calls that came with them. Cindy’s memory lapses, a symptom of MS, increased to the point where she sometimes couldn’t finish a sentence. Communication became more difficult and everyday conversations more strained. Performing the chores he’d taken over from Cindy, like loading the dishwasher, became fertile ground for arguments.They both felt cheated out of the golden years they had envisioned.“You picture buying a Corvette when you retire, not a minivan,” Chris said.Cindy felt guilty for being a burden as her coordination became worse and Chris took on what had been her household responsibilites, like cooking and laundry. Chris felt guilty when his body language or tone betrayed his frustration and compounded her guilt. More than once, Cindy considered divorce as the pain and stress of what their lives had become obscured the love and joy they’d always known.But the love never went away. And the joy, after a time, came back.‘My manner changed’A turning point came when Chris retired from CenturyLink in 2015, relieving an enormous amount of stress on both partners. He no longer came home exhausted from work. He had more time to meditate every morning, repeating intentional statements to carry him through the day.“I will say ‘I am full of love,’ " he said, extending his arms as wide as they will reach. “That reminds me I have love to give Cindy ... I relish that I have a day where I’m needed ... If things are really bad, I’ll say ‘I am calm, I am strong.’ "Introspection helped him challenge the “narrative” he once held about devotion — and entitlement.“There was a voice in my head saying, ‘This is demeaning, I didn’t sign on for this,’” he said. “Did Mother Teresa think anything was demeaning? Once I embraced the concept that I am here to help her, with whatever that is, my manner changed. Now I go to bed and I sleep good.”A palliative care counseling session at the University of Colorado Anschutz Medical Campus in 2016 helped Chris realize taking care of himself was as important as taking care of Cindy. For her, the session affirmed that they’re both in the process of enjoying life, not preparing for death.In 2006, they began meeting with the Parker Pals, a self-help group for victims of MS and their families. Chris still attends regularly, Cindy goes when she can.They relish the activities they can enjoy together, like cooking dinner, but they both make time for themselves. Chris drops Cindy off at the mall in her electric wheelchair, so she can take her time and shop without him rushing her. Meanwhile, he swims at the Parker Recreation Center or works out. They stay in touch with ther cell phones.Chris still writes, recently self-publishing an autobiography of his mother compiled from her manuscripts. Cindy still quilts, though vertigo and tremors in her arm have kept her from finishing the two quilt tops she started for her granddaughter and nephew more than a year ago.‘I’ll do whatever I can’In the last few years, they’ve learned to forgive each other, and themselves, for what they’ve said in the heat of the moment. Pressure builds at times, but they acknowledge it and move on. They’ve learned how to argue and still listen to each other.They talk openly. About the proper way to load the dishwasher. About their children. About what will happen when Cindy’s needs exceed Chris’ abilities.After her diagnosis, her doctor gave Cindy 10 to 15 years to live, but 11 years later, she doesn’t trust that estimate.“We have to talk about things other people can ignore,” Chris said. “Death is an inevitability.”They talk about nursing homes. Cindy dreads the thought of living in a room too small for her sewing gear, and fears schedules that may limit when she can see her husband.“I’ll do whatever I can to keep her here,” Chris said.They talk about physician-assisted suicide, a viable option in Colorado since the 2016 passage of Proposition 106, the End of Life Options Act.“We have discussed it,” Cindy said. “I don’t know if I’m going to do it.”For now, those conversations are abstract, and Cindy can enjoy sitting in her recliner with Porscha on her lap. But a recent fall and extended stay in a rehabilitation facility reminds them the inevitable is just that.So they concentrate on cherishing every moment together, grateful for the 36 years they’ve had, looking forward to the tomorrows to come.There are worse things than MS, Chris believes.They could have lost one of their children.They could have died in a car crash.They could have fallen out of love.“If you breeze through life and you go off in different directions, you miss out on the closeness,” Chris said. “We have to be close.”
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