How to balance the demands, responsibilities and emotional strain of caregiving.
Friends and family members of those with the Alzheimer's provided an estimated 17.9 billion hours of unpaid care in 2014, according to a Alzheimer's Association report.
On a good day, Elizabeth Brood wakes up at 4:30 a.m. and goes to the gym before her boyfriend heads to work around 6:15 a.m. She makes coffee, readies her parents' morning medications – making sure to hide her mother's in chunks of bananas and in the cereal bowl – and changes her mother into fresh clothes. She takes her father to a day program, and sometimes a nurse comes to the house to help her care for her mother, giving her a chance to go grocery shopping or run other errands. Brood is 35, and the primary caregiver for both of her parents with Alzheimer's disease.
The number of Americans with Alzheimer's disease and dementia is estimated to soar to 7.1 million by 2025, a 40 percent increase from the 5.1 million affected this year, according to the2015 Alzheimer's Disease Fact and Figures report published by the Alzheimer's Association. The picture doesn't look much better for 2050, when the number of people with Alzheimer's disease is projected to increase to 13.8 million.
The number of deaths from Alzheimer's disease have also increased significantly. From 2000 to 2013, there was a 71 percent increase in deaths attributed to Alzheimer's disease, according to the report, and Alzheimer's is the only disease among the top 10 causes of death in Americans that can't be prevented, cured or slowed.
Many people don't realize how progressive the disease is, says Beth Kallmyer, vice president of constituent services with the Alzheimer's Association. Those with it live an average of eight years after their symptoms are noticed by others, while some can go on for 20 years, depending on their age and other health conditions, according to the Alzheimer's Association.
"Many people still just think it's a disease of memory. You lose some memory, forget where you put your keys," Kallmyer says. "[But] we know it's so much more than that. It goes beyond memory, executive functioning and judgment. These progresses impact your ability to do things every day, like getting dressed, bathing yourself and eating. Simple activities of daily living become a significant challenge."
Brood is among the millions who assist someone with Alzheimer's with these tasks each day. The association's report indicates that in 2014, friends and family members of those with the disease provided an estimated 17.9 billion hours of unpaid care; two-thirds of caregivers are estimated to be women, and 34 percent are over 65. The report also shows that 250,000 children and young adults between ages 8 and 18 provide help to someone with Alzheimer's disease or dementia.
In 2010, Brood was living in Vermont with her boyfriend, established in her health and fitness career, when her father was diagnosed. It became clear she would need to return to her childhood home in Mount Laurel, New Jersey. Her father, Louis, now 81, was diagnosed in January 2010; her mother, Nancy, now 65, followed that April.
"No one tells you they forget how to sleep, how to feed themselves, how to go to the bathroom. My mom, a year ago, stopped taking herself to the bathroom and doesn't go on her own anymore. Every few hours, we have to take her," Brood says.
Although her father is more aware, Brood says her mother – who was diagnosed at only 59 – functions at the level of her 19-month-old nephew. New research presented in July at the Alzheimer's Association International Conference in the District of Columbia suggests that women with mild cognitive impairment experience a decline in cognition that's twice a fast compared with men with the condition.
Louis wakes up and remembers who his daughter and wife are, but he doesn't know the year or the name of the president, Brood says. "Sometimes he thinks it's five years ago, but he doesn't remember every single day what she is like," Brood says of her mother. "He's trying to say good morning to her, and she doesn't have the capacity. It's heartbreaking to see that going on all of the time."
The disease has taken a toll on Brood as well. "I like to think of myself as 29, and that all those years are being stored somewhere for me," she says of the time since her parents' diagnosis. "Sometimes, I hope I can go back and reclaim all of that. That's a more challenging aspect."
These feelings aren't unusual among caregivers, says Constance L. Vincent, 75, a retired psychologist in Menlo Park, California, and author of the memoir "Not Going Gently," which details her mother Madeline's experience as an Alzheimer's patient and Vincent's perspective as a psychologist.
Constance Vincent, retired psychologist and author of “Not Going Gently,” is pictured here with her mother Madeline (right).
Nine years ago, she placed Madeline, now 95, in a nursing wing of a hospital for long-term care in Boulder City, Nevada. Although her experiences as a long-distance caregiver are somewhat different from Brood's, she understands the emotional turmoil.
"The caregiver, being at home with that person for a long time, specifically having to take care of them, they're in a situation that can go on for 10 to 15 years. It's no wonder their caregivers are at risk for social isolation, physical illness and financial problems," Vincent says.
The Alzheimer's Association report states that nearly 60 percent of Alzheimer's and dementia caregivers rate the emotional stress of caregiving as high or very high; meanwhile, 40 percent have been diagnosed with depression.
Vincent says it's important for caregivers to seek help to ease their burden. "They can't do it all by themselves. The person you're caring for is no longer the same parent, spouse or adult you once knew. You're dealing with someone whose brain damage is such that he or she is really only a child now. Perhaps an older child or teenager at first. They will age backwards, and will eventually become a toddler and finally a baby," she explains. That's why caregivers have to set aside expectations about what their parent could once do. "That was the past. That person is in a different reality now, and the caregiver has to adjust to them where they are because they cannot get back to the caregiver's reality," Vincent says.
With that in mind, both Vincent and Kallmyer offer ways to cope with the demands and responsibilities of caring for a parent with Alzheimer's disease:
Education. One of the most important things a caregiver can do is learn more about the disease, Kallmyer says. Alzheimer's disease should not be mistaken as a normal part of aging. The first warning sign is memory loss that disrupts daily life, such as forgetting important dates or events, asking for the same information repeatedly and relying on family or friends to remind them of things they used to be able to recall on their own. This is the most frightening time for the person with Alzheimer's disease, Vincent says. "You can't take their behavior personally," she adds.
Be patient. When talking to a person with Alzheimer's disease, it may feel as if you're communicating with a child at times. Vincent's suggestions: "Speak slower; use simple words and short sentences; make eye contact; use brief explanations; repeat instructions using the exact words each time; establish a daily routine; take them by the hand and redirect them; distract them instead of arguing; smile; give hugs and compliments and small rewards for behavior you're encouraging." These things may work, but they may not, she warns. "Alzheimer's is full of unpredictable emotions or feelings that rise to the surface very quickly," she says.
Plan. Once you know what lies ahead, it's critical to establish a financial and caregiving plan. Kallmyer says caregivers should make sure they know who their parent wants to put in charge of their decisions once they can no longer make them. Also consider the cost of a nursing home or assisted living facility. Medicare does not pay for nursing home care, Kallmyer points out. "That's a lesson that's really hard for people," she says. Getting care in the home or placing your parent in a facility may be better determined once you understand the finances and pros and cons of each.
Build a support team. "Caregivers naturally become frustrated and upset. It's hard to smile, stay relaxed and calm," Vincent says. That's why it's necessary to talk to family and friends about taking turns in caring for a loved one. Kallmyer says it's important to ask for help. "[Alzheimer's] goes on for a long time and gets worse as the disease goes on. It's surprising, but it can sneak up on people," she says. It's important to develop a plan with family members or a health care team before the point of overwhelming exhaustion kicks in. Consider finding a caregiver support group through a local chapter of the Alzheimer's Association.
Stay connected. When you're stressed beyond a point of reason, it's difficult to care for someone else or yourself. If you need help, call the Alzheimer's Association 24/7 Helpline at 1-800-272-3900 or go to alzconnected.org.
Stay connected. When you're stressed beyond a point of reason, it's difficult to care for someone else or yourself. If you need help, call the Alzheimer's Association 24/7 Helpline at 1-800-272-3900 or go to alzconnected.org.
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