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.
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As the busy summer months are approaching, keeping your health and well-being as a top priority is as important as ever. Between spending time outdoors, enjoying the warm weather, and grilling out with family and friends, the last thing anyone wants to worry about is health problems due to mismanaged medications. So here are a few tips and tricks to make managing your medications and health conditions easy with only a small time commitment. By following these simple suggestions, I hope you can keep your body in tip-top shape so you have time and energy to make many wonderful memories this summer!
by Misty Kevech, RN, MS, HHQI RN Project Coordinator
HHQI’s Underserved Population (UP) Network 
Patient Safety Awareness Week is coming up March 12-18 and I’m always excited during this time of the year. You see, patient safety seems so simple yet is so complex and I could literally spend hours talking about it. But what I’d really like to do is intrigue you into becoming as excited about patient safety and patient safety culture as I am. The analogy that comes to mind for me is that of an onion. When you peel away the layers of an onion, you are left with the heart of the onion, or rather the core. The same is true with patient safety. As you begin to peel away the actions of an organization and look underneath at the rationales for those actions, you find the underlying beliefs of an organization, the foundation, the culture regarding Patient Safety and that is where a journey of patient safety must begin.
So where do we begin this journey? Evaluate your organization’s culture, not just employee engagement, to actually look at how the employees within your organization feel about the organization’s commitment to safety. Look at your processes and what happens when a mistake is made. Is there an investigation or Root Cause Analysis of the event including not just the outcome of the mistake, but review of the system, including policies, and contributing factors? Is there a tendency to discipline or maybe terminate the employee responsible for the mistake with the reason being, if you eliminate the person responsible then the problem is solved? Do the employees in your organization feel comfortable admitting to near mistakes, mistakes that resulted in no harm, or pointing out unsafe conditions? If so, keep up the awesome job! If not, ask why? Is it because of the culture? Does everyone just keep their head down and try to sweep mistakes that didn’t result in harm under the rug? Surveys, such as the Survey on Patient Safety, can help leaders visualize where their organization is on the culture scale. It also allows for identifying a starting point for change.
But in focusing on patient safety, leaders shouldn’t lose sight of their most valuable asset – their employees. Employees need to feel supported and invested in by their leaders. This is where leaders and organizations should ensure they have a strong Employee Assistance Program, but maybe should also look into other supportive programs such as Second Victims. This program trains the staff on how to support a fellow employee who may have been involved in an adverse event. In home care and hospice, this is something that could help not just if an adverse event occurs, but also if a long-term patient expires. Even if it was expected in hospice and home care, relationships develop between the health care team and the patient; a Second Victims Program can help to provide the support needed to those involved in the care of a long-term patient who passes.
Gearing up for the big game? I have to admit, at the very moment I’m writing this I have absolutely no idea which teams are even playing in Sunday’s game. I know my brothers would be so proud! At any rate, Super Bowl Sunday has ALWAYS been a part of my life. There have been many years when the big game fell on my birthday, or often times my birthday party was held on the same day. What a great way to kill two birds with one stone, mom!
INGREDIENTS:
As for the nachos, I’m not crazy about cheese these days (certainly not the fake cheese spreads, dips, slices, and whizzes out there) and neither is my belly. Some of these cheeses lack nutrients and include questionable ingredients that can make their way into ‘processed cheese products’. This year, I’ll be serving up a rendition on this 
Since this is the first blog for 2017, the Home Health Quality Improvement National Campaign (HHQI) would like to wish you a Happy New Year! We hope that this is a successful year related to your quality improvement efforts. To assist with those efforts, HHQI has some exciting news. Our new comprehensive online resource library will help you find evidence-based tools and resources quicker and ensure that you haven’t overlooked valuable resources.
HHQI should be your first place to look. We search for evidenced-base practices and then compile supportive resources for implementation of the practice. All HHQI materials are free and are in the public domain (no copyright issues). HHQI encourages you to customize the resources to best meet your organization’s needs, including adding your agency’s logo to them.
