For the past six years, Electra has been the caregiver for her mother Audrey who suffers from kidney disease, needs constant care and is now on dialysis. Audrey had been living in another state and, realizing that Audrey could no longer take care of herself, Electra moved her…right into her own apartment. In October 2009, Electra experienced her…
View this caregiver's story

For the past six years, Electra has been the caregiver for her mother Audrey who suffers from kidney disease, needs constant care and is now on dialysis. Audrey had been living in another state and, realizing that Audrey could no longer take care of herself, Electra moved her…right into her own apartment. In October 2009, Electra experienced her own health crisis when a gall bladder operation revealed cancer that involved her ovaries and many other organs. "You find out who your friends are, and the friends who can't deal with it—you don't hear from them. But I found out that people I didn't think were that close to me, are," says Electra. Her own pillar of strength is her daughter-in-law Hollie, wife of one of the two sons Electra raised as a single mom. Wrote Hollie, "Electra had major surgery in November where the doctors performed a hysterectomy, removed her appendix, part of her colon and her intestine, all infected with cancer. She has begun chemotherapy and even Electra, someone who is always on the go and is as full of life' as her name suggests, finds her strength dwindling. I don't know how she continues to manage to cook and clean after her mother and take care of herself. But, amazingly, she does it. She is an extraordinary woman—I know it is killing her to not be able to give like she is used to giving. Instead of being able to focus on getting better and beating this awful disease, she has to worry about being able to feed her mother and whether or not she will be able to get the treatment she desperately needs due to her financial situation." Electra was careful to explain her own illness to her granddaughters, 12 and 8—why she chose to shave her head rather than watch her hair fall out—and even took them with her when she went to get a wig so they wouldn't be frightened by what was happening to her. Throughout her aggressive chemo treatments, Electra still takes care of her mother, saying that if she doesn't make Audrey meals, Audrey won't eat, and arranging for her transportation for dialysis. "You take a deep breath, make your meals, do your laundry…You find the strength because you have to, because there's another human being depending on you," says Electra.

 

In June 2006, in the space of one month, Caroline lost her job after 18 years in the corporate world due to downsizing and became a caregiver to her parents when she discovered that her mom, who she suspected had dementia, had amassed credit card bills totaling $100,000 and was hoarding purchases in her home. "I thought Mom and Dad…
View this caregiver's story

In June 2006, in the space of one month, Caroline lost her job after 18 years in the corporate world due to downsizing and became a caregiver to her parents when she discovered that her mom, who she suspected had dementia, had amassed credit card bills totaling $100,000 and was hoarding purchases in her home. "I thought Mom and Dad had their act together—they ran a successful business, had life insurance, a healthy retirement account and their house was paid for. Did I have to worry about them when I was climbing the corporate ladder to fulfill my dreams? As it turns out, yes," says Caroline. As the family's financial affairs were sorted out, Caroline started taking care of her dad Bob moving him into her home, while her mother who had broken her hip moved in with Caroline's sister. Her mom's type of dementia is responding to medication, whereas Caroline's dad has had many physical setbacks, including a short stay at assisted living , a recent stroke and three months of rehab that followed. Caroline, who had just gotten married when her parents' health declined, had a steep learning curve that included finding out how to get her dad VA benefits, which environment was best for him—living at home or assisted living—and then how to prepare for the chosen environment. Beyond modifying her home so that her dad could better navigate it, Caroline became a certified nursing assistant or CNA through the Red Cross and is currently working toward getting her gerontology certificate to better care for his health needs. Recognizing that her situation is far from unique, she founded a company, Preparing for Care, LLC, to make what she learned through caregiving available to other adult children about to or now caring for their parents. Caroline frequently speaks at women's groups on topics such as how to obtain VA benefits, geriatrician and elder law specialist. "I went from St. John suits to scrubs getting my CNA so I could understand my father, help him as he moved through the next transition and learn how to care for someone with dementia," she says. Caroline admits that she has experienced every emotion possible, from anger to depression, but now sees what happened as a blessing, saying if she can help people ask the right questions of their parents, ask them in the right way and help them be more prepared for aging, "maybe children can remain children and parents can remain parents."

 

Corinne is caregiver for her mom, a role that has intensified over the past eight years, coinciding with the birth of Cori's daughter. Cori's role as health advocate, however, began 20 years ago when her mom Barbara had breast cancer. Soon after, Barbara married her second husband Norman and moved into his house, just a few miles from Cori…
View this caregiver's story

Corinne is caregiver for her mom, a role that has intensified over the past eight years, coinciding with the birth of Cori's daughter. Cori's role as health advocate, however, began 20 years ago when her mom Barbara had breast cancer. Soon after, Barbara married her second husband Norman and moved into his house, just a few miles from Cori, close enough for her to help out when needed, such as when Barbara was treated for colon cancer and when she had a heart attack. As Cori's husband John wrote, "Between the years 1998, when we married, 2001, when our daughter Brighid was born, and 2009, there have been many opportunities for Cori to hone her skills as a caregiver and patient advocate. Between her mother and her stepfather, there were several hospitalizations and surgeries for ailments ranging from heart by-pass surgery to colon and prostate cancers, to hand surgery to relieve rheumatoid arthritis, and Cori was always there, first in the hospital, visiting every day for hours a day, keeping notes on changes in condition and medication, conversations with doctors and nurses, and asking questions when there seemed to be contradictory statements or actions." Cori's being in close proximity made one medical problem after another more manageable for Barbara and Norman, though in the past few years Norman began showing signs of dementia that were going beyond his wife's and step-daughter's abilities. His situation rapidly escalated last summer. Barbara slipped on a wet step on the porch of her home and fell, shattering her left elbow and her right thumb. The elbow required extensive reconstruction and rehabilitation. "After Barbara's return from the hospital, Cori will still needed because Barbara did not have use of either hand, one was in a full cast and the opposite thumb was also immobilized," wrote John. "Cori and my daughter (now 8 years old) stayed with Barbara and Norman for six weeks. During this time, it became clear that Norman's care was going to have to be given over to professionals, as the chaos at home seemed to have caused another cognitive decline." Watching all Cori had to do for Norman made Barbara realize the situation wasn't really manageable and they found an assisted living facility for him. "Mom's good at taking care of him, but it's not healthy for her," says Cori. "It's not like convalescence from a broken leg or cancer—it's a disease that's not going to get better." It's Cori's approach that gets them through each crisis. "He's a different person," she said about Norman. "Let's enjoy what we have, not mourn what we don't have. Being sad isn't helping the person. Instead, what can we do to make sure he feels good?" Cori herself has been battling major depression and says she fights to have a good outlook because without it she wouldn't get out of bed in the morning. Most recently, medical tests revealed that Barbara has lung cancer. "I'm talking to her more and more about having her life with us," Cori says. "It was a sad holiday season for my mother. But we're optimistic. That's the only way to be from our point of view—it does no good to sit here and be negative." In the words of her husband, "Cori is the best advocate a person could ever hope for. And I know that our daughter could have no better teacher to show her the importance of compassion and service to others."

 

Six years ago, just after Maria's daughter Jade graduated from high school and was off to college, Maria started to live her dream: She moved to another state and began a new life and a new job. Then she learned that her mother Grace had started to develop Alzheimer's. Maria's father had died about 10 years earlier, leaving Grace alone to…
View this caregiver's story

Six years ago, just after Maria's daughter Jade graduated from high school and was off to college, Maria started to live her dream: She moved to another state and began a new life and a new job. Then she learned that her mother Grace had started to develop Alzheimer's. Maria's father had died about 10 years earlier, leaving Grace alone to take care of Maria's mentally challenged older sister, Linda, who had always lived with her parents. Grace was a cancer survivor who had managed to live a long productive life, but now she wasn't able to take care of either herself or Linda. Maria headed back home to devote herself to the care of both her mother and her older sister. "Maria's six-year journey has not been easy. With extremely limited resources, the care of her mother at home has been a grinding routine of increasing responsibilities and decreasing personal time. Endless sleepless nights, endless adult diaper changes, endless concern for an aged woman who has no concept that many things she is doing are dangerous and life-threatening, impersonal social service agencies, nearly insurmountable, always bewildering labyrinths of health agency red tape and paperwork," wrote her friend Miguel. "Maria is not superwoman. In spite of her unlimited love for her mother, it is inevitable that her emotional health has suffered. To some extent she depends for moral support on a tiny circle of friends both in her hometown and elsewhere. But in the final analysis her incredible burden is being shouldered by her mostly alone." Maria's mom passed away just last week. "I grieved for her for starting a year ago," Maria says, thinking back on the mental changes her mother had gone through. Though Grace was elderly, she had been mobile, but she had recently fallen and broke a shoulder, an injury she never recovered from. Now Maria is fully on her own to take care of her older sister, but her presence over the last years has had a positive impact on Linda. "My mother had done everything for her, but I've helped her learn how to do laundry and help in the kitchen. She's high functioning, but she needs help making decisions and she doesn't drive. I have to buy all her food and clothes," explains Maria. "Sometimes it's just so difficult when you're in the moment."

 

"My job as a caregiver is to relieve, comfort and ensure that the least amount of pain is felt, if possible. Most importantly, I want the person I'm caring for to know they're with someone who cares and that at the end of the day, they're never alone," says Patricia, a professional nurse who officially left nursing to care for her elderly parents.
View this caregiver's story

"My job as a caregiver is to relieve, comfort and ensure that the least amount of pain is felt, if possible. Most importantly, I want the person I'm caring for to know they're with someone who cares and that at the end of the day, they're never alone," says Patricia, a professional nurse who officially left nursing to care for her elderly parents. Wrote her daughters Antonica and Latricia, "For the majority of our lives, as a single parent, she has not only taken care of the two of us, but became caregiver to our grandparents, while battling many medical problems of her own, including cancer and severe thyroid problems. We were too young to realize that her health was in dire jeopardy, but no matter what the issues were, she was there to take us to school, join us on class trips, doctor's appointments—all the necessary things children need to survive and thrive in life. Amazingly, she did this while also caring for our grandparents, who also faced many health challenges as well, including heart problems, strokes, severe diabetes, kidney problems and a broken hip. Our grandmother is currently wheelchair-bound after having one leg amputated up to the knee. When our mother got sick, my grandparents' doctors all recommended a home health aide come in to give her some relief. That didn't stop her from her care duties: She takes the time to walk each home health aide through the daily routine and accompany them on every appointment, just to make sure that the best things are done as easily as possible. This became most evident when our grandfather died and our grandmother became hospitalized as a result of her grief within 24 hours after his viewing. Mommy made sure that my grandmother was well taken care of during her short hospital stay, with the blessing of Grandma's doctors bringing a cooked meal that she would readily eat to prevent her from suffering from a severe diabetic reaction. Her pristine recordkeeping makes all the doctors believe that the key to the longevity of her parents (Grandpa died at age 84 and my Grandmother is now 84) can be directly attributed to her care, wit and instinct. She taught us a long time ago that caring comes not only in the form of nursing, but also cooking, shopping, being a counselor, a friend, and most importantly doing it from pure unadulterated love. One of my mother's sayings since we were little is, 'You have to do what you got to do, not to do what you want to do.' She says the most important thing that makes her proud to be a caregiver is: She never left our grandparents alone, and we hope that we can accomplish that goal in our lives and also make her proud too by embodying those same values when she needs the caregiving done for her."

 

Nine years ago, Sandee's husband was diagnosed with Huntington's disease, a debilitating illness with no cure. "In 2001, my husband, an electrical engineer, took early retirement from his job due to his Huntington's chorea," explains Sandee. "Doctors said there was no treatment available, but we refused to accept that and…
View this caregiver's story

Nine years ago, Sandee's husband was diagnosed with Huntington's disease, a debilitating illness with no cure. "In 2001, my husband, an electrical engineer, took early retirement from his job due to his Huntington's chorea," explains Sandee. "Doctors said there was no treatment available, but we refused to accept that and went to Canada for homeopathic therapies, which seemed to help. We planned to go every 3 months and a wonderful friend of mine, Carol, moved in to take care of house and things while we were traveling. Then she had a major stroke leaving her paralyzed on her right side. After many months of rehab, she moved back in with us and required some assistance." Four years ago, while helping her mother-in-law who had diabetes and required an amputation, Sandee's own mother Alyce, who had Alzheimer's, could no longer live alone and moved in with them. In fact, by then, they needed to move to a single story house "because my husband was having increased difficulty with stairs," says Sandee whose support system includes another good friend, Su. It also includes the staff at the adult day care where Alyce goes twice a week thanks to grants from the Alzheimer's Arkansas and the Alzheimer's Foundation of America. "I go to support groups and listen to others and how they cope with all the problems associated with caregiving," says Sandee of her coping strategy. "The Alzheimer's group here has a library with tapes and books to help with each problem along the way." And with all her caregiving, Sandee gives back. "Through all this Sandee has been very positive and there is always a smile on her face. She is gentle and patient with her mother and husband and always treats them with the utmost respect and care. She is active in our caregiver support group and facilitates another support group for families dealing with Huntington's disease. She offers encouragement to other caregivers and spends her time working on caregiving solutions and resources. She rarely, if ever, complains but embraces her chosen new position of a fulltime caregiver. She is an inspiration to everyone who knows her," wrote Lori, of the adult day care center Sandee's mom attends.

 

"My husband Henry is a superman caregiver," wrote his wife Christine. "He helped my sister and I care for our elderly parents over a 6-year period. Then, within months of my parents dying, his stepfather fell ill. He cared for his stepfather and mother through it all." After his stepfather died in 2007, Henry focused his efforts on helping his mother Clara stay…
View this caregiver's story

"My husband Henry is a superman caregiver," wrote his wife Christine. "He helped my sister and I care for our elderly parents over a 6-year period. Then, within months of my parents dying, his stepfather fell ill. He cared for his stepfather and mother through it all." After his stepfather died in 2007, Henry focused his efforts on helping his mother Clara stay independent, even after she fell and broke her hip. Henry stepped in to coordinate probate and all other legal and financial matters and arranged medical care for her from his home in another part of the state, traveling back and forth as needed. Two years ago, when the family realized that it would be best for his mom to move in with them, Henry found a new house where they could all live comfortably. During the process, "he found extended care or her, visited and talked to his mother every day until the move. He brought her home, got her all the healthcare help she needed, and now takes her to the doctor, wakes her each morning, checks in on her several times a day, cheers her up and helps her stay positive. I honestly don't know where she would be without Henry," wrote Christine. "Motivation for me and my wife is simply doing the right thing. The issue of aging more important and more complex now," says Henry whose believes the successful caregiver is realistic, pragmatic and practical. His philosophy is that "life is one-third learning, one-third earning and one-third returning." Although still employed, he is now in that place of returning. "And if that weren't enough," his wife added, "he was so impressed with hospice throughout the process with my parents and his stepfather that he is a volunteer there as well."

 

Julie has been taking care of her mom Anna for the past 13 years, since she fell and broke a vertebra. Julie first moved Anna from a house to an apartment where she could better manage. Then, eight years ago, after Anna suffered a severe stroke, Julie moved her into her home. Julie is trained in nursing, originally specializing in neonatal care, but…
View this caregiver's story

Julie has been taking care of her mom Anna for the past 13 years, since she fell and broke a vertebra. Julie first moved Anna from a house to an apartment where she could better manage. Then, eight years ago, after Anna suffered a severe stroke, Julie moved her into her home. Julie is trained in nursing, originally specializing in neonatal care, but her caregiving allows her to work only when others can cover for her at home—which is what Julie's daughter Sara did most weekends when she was in college. Anna, now 89, is exceedingly frail from severe osteoporosis and can't be left alone. "Mentally there have been changes, too, but she still knows who I am. I quiz her on what day it is, what month, my birth date to keep her more in tune with her memory," says Julie who also uses music therapy with her mom. "It's great for the elderly, great for her memory. One day I was singing in the kitchen and she told me I messed up the lyrics! And she was right." As Julie's daughter Sara wrote, "I would like to nominate my mother for not only being a dedicated, longtime caregiver of my grandmother, but for also being as equally dedicated to our family. In 2002, the weight of her roles escalated exponentially after my grandmother suffered a severe stroke. This is where the real story begins—a long, emotionally heavy road that tested my mother's ability to juggle herself in ways I believe most people would not be able to handle. My grandmother's illness left her with severe physical and mental disabilities; she was no longer able to care for herself in ways many take for granted. She was no longer able to dress herself, get herself a drink of water or a bite to eat, take her pills, care for herself in the restroom and bathe herself. Therefore, my mother needed to be home with her at all times. My father owns his own transmission repair business and is extremely busy working and managing the garage. My mother tried hard to make sure we could still be involved as much as we wanted to at school and still spend time with our friends like all teenagers enjoy. As a caregiver, she had to make a lot of sacrifices through the years. Dinners at home become focused on the one who needs dietary restrictions. Dinners out at restaurants become few and far between. Weekend trips together need to be carefully planned months in advance, as outside help is in short supply and very expensive…My mother is able to rest easy at night knowing that she has done all she could for her mother, who was so deserving of this love and compassion. My grandmother, like my mother, took care of my great-grandmother in the same way my mother does today, while raising her four children. My grandmother deserves to live the rest of her life surrounded by her family in a peaceful place that my mother has created for her, and I am thankful that my mother has a great love in her heart for so many."

 

Sally has been a caregiver since the 1990s when her parents moved closer to her and her mom June had a breast cancer recurrence. June's health was further compromised by acute leukemia. "My mom has taken care of her parents, as well as her children, her husband, in-laws, and now a grandchild, for as long as I can remember!," wrote her daughter Junell.
View this caregiver's story

Sally has been a caregiver since the 1990s when her parents moved closer to her and her mom June had a breast cancer recurrence. June's health was further compromised by acute leukemia. "My mom has taken care of her parents, as well as her children, her husband, in-laws, and now a grandchild, for as long as I can remember!," wrote her daughter Junell. "In the late '90s my grandmother was diagnosed a second time with breast cancer, and I saw what a true caregiver she really was! Mama (what we called my grandmother) was so sick, and my mom would go with her to every treatment, a 20-mile trip from our home. When her cancer spread, my mom was in the hospital every single day with Mama. Mom did her research and looked up every study on breast cancer, and knew the ins and outs of her mom's treatment. Mom was there the morning Mama passed away on June 15, 2000. After losing her mother, my mom realized that measures needed to be taken to ensure that my grandfather's grief wouldn't take him from us as well." To keep him from falling into a depression after his wife died, Sally found an independent living complex for her dad, though still seeing or talking to him daily. "My mother takes every one of his calls, many times having the exact same conversation twice in an hour because he forgot he spoke to her! She has gone with him to every doctor's appointment, every eye exam and every dentist appointment because he confuses the information. This past Thanksgiving Pops (who is now 90) was in a car accident where another driver ran a red light and totaled his car. He now relies completely on my mother for transportation. One would think that taking care of our Pops would be a full time job, but mom still manages to do this while working for our church's preschool and helping to take care of my son during the afternoons while I work! I watch her and can't imagine how she is able to do it without another sibling to lean on," continued Junell. After years of her dad's living independently, Sally has found that Harry now needs greater care at an assisted living facility, which she says will actually give him greater independence from her, yet provide more checks and balances and attention. When he had to undergo a pancreas operation and she took over his finances, she realized how prevalent scam artists are at preying on the elderly. "Moving to assisted living will open a new world for him, ensure that he eats three meals a day and opportunities for social interaction." And Sally won't have to worry quite as much. "I call it the "club sandwich" generation because we have children, grandchildren and parents. I think I was blessed in that I'm an inherently calm person. Of course there are days you're frustrated, sad and overwhelmed, but I learned about support groups for those my age taking care of parents—it's good to hear their stories and learn about what's available. Some days it does seem overwhelming, but you have to laugh or you would go crazy. What keeps you going is that you know you're not alone."

 

A few years ago Tanya traded in her SUV for a minivan, dubbed the "Senior Shuttle," to more easily transport her elderly aunts and uncles living nearby who depended on her because they had no children of their own. The shuttle took on two more passengers in 2009 when Tanya made the difficult decision to move her parents, who had been…
View this caregiver's story

A few years ago Tanya traded in her SUV for a minivan, dubbed the "Senior Shuttle," to more easily transport her elderly aunts and uncles living nearby who depended on her because they had no children of their own. The shuttle took on two more passengers in 2009 when Tanya made the difficult decision to move her parents, who had been battling health issues, from their rural home some two hours away to a senior living facility just 10 minutes away. Until then, Tanya had traveled back and forth to them whenever there was a health crisis. Unfortunately their health problems are continuing, and Tanya has been giving daily support and care. "In December, her mom fell off her bed at home and broke her femur about the same time her dad was battling pneumonia," wrote Tanya's husband, RV. "After some time spent in nursing home rehab, her mom was admitted to the emergency room at the hospital on December 21 with other complications including heart and lungs. My wife's dad drove to the hospital that same morning and upon arrival doctors determined that he too should be admitted into emergency…On Christmas Eve afternoon we gathered presents from under our tree and took them to the hospital, where we proved that celebrating Christmas is not predicated on where it is shared, but with whom. Her dad was released that evening and, after spending a week with us, was well enough to go back home, where his health gradually improves. Her mom was released on Christmas Day to hospice, where she remains." As Tanya honors her mom's living will, she is focusing her attention on her dad who is emotionally fragile and has arthritis and early signs of dementia. "With parents, it's a circle that comes around. You don't want to treat them like a child, you try to treat them with respect," says Tanya who tries to take her dad's mind off his imminent loss…and her own. "She is an inspiration in deed and action, and through it all still manages to find time to take care of her husband," added RV.

 

Bob Silver

Michael Tucker
& Jill Eikenberry

Joan Garbow

Julie Davis