by Misty Kevech, RN, MS, HHQI RN Project Coordinator
June is the National Alzheimer’s and Brain Awareness Month. The Alzheimer’s Association also celebrates June 21st as the “Longest Day” which is about love – “Love for all those affected by Alzheimer’s disease.” Alzheimer’s is the most common form of dementia.
A study just released in May by the Centers for Disease Control and Prevention (CDC) indicates that the incidence of Alzheimer’s disease is rising as well as the death rates (55% increase). The large Baby Boomer generation is one of the reasons for the increase in disease, because age is the greatest risk factor for Alzheimer’s. Additionally, the burden of caregiving falls heavily on loved ones.
As healthcare clinicians, we provide or coordinate care for patients with dementia. Many of us also are either a caregiver or know someone personally that is caring for their loved one with dementia. It hits close to home, but we really don’t know the struggles or the joys of caregiving for a person with dementia until we have walked in those shoes.
I had the pleasure of visiting with a nurse of 36 years to discuss her story of caregiving. While she was happy to share her story, she and her family wished to remain anonymous. For the sake of the story, I will refer to the nurse as Sara and to her mother as Marie.
Marie began to develop signs of dementia at about the age of 65. The disease began at a slow progression until the age of 78 when it became clear she could not be alone all day. Marie’s sister moved in to help care for her for two years prior to Marie’s husband’s death, and she stayed on for several more years. Sara and her brother worked together to make it work.
Eventually, Sara moved in with her mother when her aunt relocated to another state and enlisted the help of private caregivers and outside agencies to supplement care. In 2011, Marie developed some serious health issues which advanced her dementia, and her physician said she could no longer be left alone. Later that year, Sara had made the decision to quit her job so that she could care for her mother full-time until they had her PDA Waiver in place, noting that the cost of private caregiving is quite expensive. Sara and her brother enrolled their mother in adult daycare in an effort to provide their mom with socialization and functional activities in a safe environment which allowed some respite for the family. Marie was always happy when she returned home from the daycare, even if she couldn’t say what her day was like.
There was still a huge burden on the family in coordinating Marie’s care, locating and enrolling her into the adult day care, determining how and when to use caregivers in the home, as well as managing her finances and medical conditions. In Fall 2012, the PDA Waiver was finalized and the family began using the adult daycare and caregiving agency for Marie on a more regular basis. Unfortunately, in early 2013 Marie had another serious illness and was frequently hospitalized. This led to another sharp decline in her mental status. When these types of declines occur, there is no return to a baseline. Nevertheless, Sara decided to return to work part-time that Fall. A year later, the medical problems exacerbated, and Sara was often called away from her job when her mother would become ill at daycare and be sent to the emergency department. As Marie’s dementia and health continued to decline, she was no longer a candidate for daycare, and the painful decision to place her in a nursing home was made. She is now very settled in the dementia care unit of a local skilled facility, and her family members visit frequently.
The emotions of caregiving ranged from anger to sadness to depression. The sadness Sara and her brother experienced included the feeling of losing the mother they loved and enjoyed being around. Turning a loved one’s care over to strangers is also a very difficult thing to endure. Looking back, Sara definitely agrees that she did have symptoms of depression while she was caring for her mom, but she didn’t worry about herself because her focus was always centered on caring for her mom. She missed her own physician appointments and didn’t address any of her own health needs. We know this often happens with caregivers but don’t think it will happen to us, especially since we are healthcare clinicians.
One of the surprising aspects of Marie’s disease was the toll that medical complications took on the progress of the dementia. The result of that lengthy 2011 medical hospitalization was clostridium difficile (C.Diff) infections which led to sepsis. Marie’s memory significantly declined during those months of infection and never returned. Caregiving needs increased during this time, but because she was contagious, external caregivers were remiss to continue their services.
In some ways, as the cognitive status declined, some aspects of care became easier. No more fighting over what clothes to wear, or where this goes, or how to use that. Sara’s mother not only listened to what she said, but looked to her for any suggestions and for all the answers that her mind could not provide. Marie’s sleep patterns were fairly good, but for safety reasons, it became necessary to sleep with her, which resulted in Sara not getting a good night of sleep for years. But that was ok – it was all for her mother and it was what she wanted to do, not what she had to do.
This past fall, after recurrent urinary tract infections (UTIs), Marie’s care became too much and a decision was made to place her with the help of an excellent social worker. One of the reason’s the social worker was so attuned to the needs of people with dementia is that she was caring for her own mother with the disease. It was the right thing to do, and the right time.
Sara’s father told her before he died, “Don’t lose your mother.” Her aunt told her that no one should ever pressure their children to promise never to put their loved one in a nursing home. She understood what a hard decision it is for family to make and felt that the burden of breaking a promise just compounded that tough situation.
Sara’s mother is now in a dementia care unit in that nursing home, and she seems happy there. While her functional status has declined, she is surprisingly well cared for and safe. Marie is followed by a geriatrician who has completely stabilized her medical condition of recurrent UTIs.
Sara is now working full-time and is enjoying her work in home health care. She is getting her life back in order and regularly visits her mom. One thing she has found is that there are always little things related to her mother’s care that she needs to handle as she remains her mother’s primary caretaker. Marie enjoys manicures, pedicures, facials, walks, being read to, and laughing at everything, even if neither knows what they are laughing about!
I asked Sara what she thought was the best part of caring for her mother. She said, “It has been my honor to care for my mother, and to pay her back for everything that I put her through when I was growing up. It has made me appreciate how caring for someone so disabled can actually bring one great joy and peace of mind and heart. I felt strongly that I was meant to care for her, and that I should not run from it, but embrace it. I do not regret it for one minute and feel so grateful she is still here. I am so thankful that we are able to have our moments of recognition and happiness together for what is left of her years on earth.”
HHQI wants to thank Sara and her family for their willingness to openly share their story. We also want to thank everyone who shoulders the tough but rewarding role of being a caregiver for their loved ones. We hope that this story will help you to support patient families who are caregivers, as well as yourself or someone in your family that serves as a caregiver.