The Tipping Points That Turn Us Into Caregivers
An expert details the crucial moments when someone must step up — and when they need to get help
Sherri Snelling, founder and chief executive of the Caregiving Club, is a nationally recognized expert on America's family caregivers and the author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care (Balboa Press, 2013).
Every situation is different, but there are many common tipping points that push someone from occasional helper to regular caregiver. Recognizing those moments, and acting on them, can ease the journey and help both caregiver and recipient preserve their health and independence as long as possible. Everyone involved may also recognize when professional full-time care is necessary.
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Following are the most common tipping points, which involve three challenges: physical, safety and behavioral.
Mobility issues Aiding a parent, spouse or relative who is unable to walk can become a significant physical challenge. A wife weighing 120 pounds will likely struggle to manipulate a 200-pound husband into and out of a car or bed. Not surprisingly, at least 52 percent of all caregiver musculoskeletal injuries occur when lifting or transferring patients, according to AgingCare.
Proper lifting technique is critical for the caregiver, who, like a weightlifter, must always bend the knees, keep the back straight, ensure a firm grip and let leg muscles do most of the work. But even with the best form, assistance from another family member or aid may become necessary to preserve the health of both caregiver and recipient.
Incontinence Cleaning and changing a loved one who has lost the ability to control his or her bladder and bowels is one of the most unpleasant and dispiriting tasks a caregiver faces — and it's often the tipping point that leads families to turn to home health aids or nursing-home care.
Typically, an overactive bladder creates added frequency and urgency to urinate, and accidents occur when a person's mobility is hindered. Alzheimer's patients may not heed signals to go to the toilet or may forget where the bathroom is located. Neurological disorders such as Parkinson's disease or dementia can indirectly cause accidents as well, while other conditions such as diabetes, Crohn's disease, multiple sclerosis or prostate cancer can spur incontinence. For those facing the need to wear adult diapers, the situation can be humiliating.
The CareGiver Partnership, a shopping and information resource for families trying to manage incontinence issues, features more than 400 products and allows caregivers to request samples before buying in bulk. It also maintains a hotline consumers can call for support and advice from experienced family caregivers.
Falls Every 28 minutes, a senior dies of injuries resulting from a fall, according to the Centers for Disease Control and Prevention, and 2 million older Americans are treated in emergency rooms each year after falling at home. These accidents can often end someone's ability to live on their own, even with caregiving help, so reducing the risk of a fall is crucial.
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Maintain clear pathways for easy access and mobility. Remove rugs and other obstacles that could trip up someone who cannot lift his or her feet or uses a cane or walker. Install sturdy horizontal and vertical grab bars in showers and baths. Relocate a master bedroom to the ground floor to minimize dependence on stairs. A care recipient's eyes should also be checked on a regular basis since vision problems often lead to falls, and caregivers should always ask doctors about the side effects of any new medications, which can make someone dizzy or disoriented.
Caregivers who can't be on guard 24/7 should consider monitors and other devices that help prevent falls or alert caregivers in an emergency.
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Wandering A loved one with Alzheimer's disease or dementia may wander away from home, posing a serious safety issue and risk of serious injury or death. Six out of 10 Alzheimer's patients have a tendency to wander.
Dr. Sally Brooks, vice president of physician and medical development for Kindred Healthcare in Louisville, Kentucky, knows the risk. Her father, who suffers from dementia, roamed from the family home multiple times. Local police were able to find him, but those episodes marked the tipping point that led her family to find an assisted-living facility that could keep her father safe and accommodate her mother's depression and limited mobility. And yet, she says, "One day my dad left the facility unsupervised. He had his hat and coat on and started a conversation with a doctor in the hallway who thought he was a visitor. The doctor allowed my dad on the elevator as they chatted, and my dad walked right out the front door."
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Brooks' father was found quickly, but she discovered her caregiving responsibilities did not end when he entered supervised care. "I had to remain vigilant with the assisted living staff to insure that they monitored him properly to avoid any future incidents," she says. "Even in a secure setting, my role remains being the person who insures my parents' safety through good communication and frequent check–ins."
Aggressive behavior Whether it is the paranoia and outbursts associated with sundowning among Alzheimer's patients or the need to support someone who has been hurtful or controlling in the past, managing the emotional strain of caregiving is always difficult. But actual emotional or physical abuse can be a tipping point for most caregivers trying to manage on their own.
Many feel obligated to care for an abusive spouse or parent because they have already spent decades coping with the situation. They may feel guilty when that person suddenly needs help, but bringing them into their own home could put the caregiver's health and wellness are at risk. (Several studies have found that up to 50 percent of veterans with post–traumatic stress disorder commit spousal or family abuse.)
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Finding support groups where caregivers can share openly with others who have experienced similar issues is one of the best ways to get help and make decisions about next steps. "Caregivers have to get over the guilt of not wanting to care for someone who is hurting them emotionally or physically," says psychotherapist Diana Denholm, Next Avenue contributor and author of The Caregiving Wife’s Handbook. "An abusive relationship will only get worse when caregiving is needed. Caregivers have to remember safety is paramount — both theirs and their loved one's."
Failure to communicate When care recipients can't communicate, whether due to a stroke, Alzheimer's disease or throat or lip cancer, it becomes an even greater challenge to look after them safely. "The 15 million Americans who care for a loved one with Alzheimer's have to become detectives and look for clues in behavioral changes and adapting our communication style," says Ruth Drew, director of family and information services for the Alzheimer's Association. People with Alzheimer's who are unable to communicate often feel fearful, spurring agitation, frustration, confusion and depression.
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If a patient becomes combative or physically perturbed without obvious cause, caregivers should check for a bed sore or injury or ask a nurse or physician to help identify the underlying issue. It's also important for a primary caregiver to be aware of distractions that can cause anguish, such as the introduction of a new in–home care worker or a visit from boisterous grandchildren. "If we could see the world through their eyes," Drew says, "we would recognize there is a reason for their distress, but all we can do is try to read the cues and go with the flow."
Many caregivers see it as a personal failure to have to call for outside help, whether from family members or professionals. Recognizing the tipping points that make care more than a one-person operation — and understanding that you're not the first to face these situations — are the keys to moving to the next stop in a caregiving journey, without undue stress or frustration. "Caregivers have to realize they cannot do this alone," Drew says. "Everyone has a different threshold for what they can and cannot do. So don't judge yourself or have guilt over why you're struggling more than someone else did."
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