Holidays are a time of fellowship and unity with family and friends. Yet, the holidays can be difficult for families when a loved one is diagnosed with Alzheimer’s or dementia. Caregivers may feel overwhelmed with balancing care and managing holiday traditions.
My wife, May, was diagnosed with breast cancer in 2005 at age 39. In 2015, after being diagnosed with pancreatic cancer, she underwent a Whipple procedure, whereby some of her pancreas, small intestine, stomach and other parts were removed.
Amid all the COVID-19 restrictions, there is a bright spot — the opportunity for families to celebrate the holidays together by engaging creatively in a way that’s enjoyable and safe for everyone.
While younger members of the family are on the go and ready to run around the house, seniors (especially those with dementia) will prefer quieter, more structured activities.
An increasing number of family caregivers are performing more complex medical care for their family members at home. According to Home Alone Revisited: Family Caregivers Providing Complex Care, a report prepared jointly by AARP and the United Hospital Fund, there is an increase in the number of family caregivers performing tasks that would, in the past, have been provided under the direct supervision of a medical professional.
Guardianship, conservatorship, trustee, power of attorney, agent, healthcare surrogate and other critical decision-making positions in the life of a senior or an adult with disabilities are a complicated mixture of ethics, law and common sense. Many caregivers, however, have little or no training in these areas and can find themselves in awkward and unnerving positions.
The COVID-19 pandemic has affected everyone in some way. But our most vulnerable population, our senior citizens — especially those with dementia — are being particularly challenged. Our normal routines have been altered during the pandemic. This can be devastating for dementia patients, who thrive on the consistency of a regular routine.
Healthcare systems are changing, with radical implications for family caregiving. Cost-saving reductions in hospital stays ensure that patients are discharged “quicker and sicker.” Management of complex chronic care thus moves to the home, and responsibility for that care shifts from medical professionals to family caregivers.
The COVID-19 pandemic has all of us dealing with additional stressors in life, and many of us may
find that our abilities to deal with conflict and issues are short-fused. People living with dementia (PLWD) rely on their care partners to provide assistance with activities of daily living with kindness and compassion. PLWD also require mental stimulation, socialization and a reason to live just as much as you and I do. COVID-19 has changed our world into a place where we no longer feel safe, and social distancing has left many people feeling lonely, depressed and isolated.
Music is often the background of many of our memories. We grow up hearing it on the radio, on TV and in concerts. We sang in school and at special events. We often associate certain songs with our relationships, happy memories, sad memories, growing up and different seasons of life. Because of its constant presence in our lives, music is deeply woven into our memories, and can offer hope and helpful tools to those whose memories are fading.
Deciding when is the right time to find senior care for your kupuna can be an intimidating task. You want to provide the best care possible for them, but how do you know if it’s the right time; where do you start? First, understand and identify the level of care your senior needs to conduct day-to-day activities and care for themselves.
Hiring a home care aide represents a major transition in family caregiving, especially when the care recipient is a person with dementia (PWD), less able to express his or her needs. Initial encounters may stress both sides.
Memory care communities that first began appearing in the 1990s are an important care option today for the growing number of families caring for a person living with Alzheimer’s disease or other dementia. When considering memory care, look for a community with a rich and lively activity program, and staff who are well-trained in dementia care, and exemplify a caring and kind spirit.
Time can stop when memories are lost for a person with Alzheimer’s disease. At certain stages, the brain loses its recent (short-term) memories. The brain — and therefore, the present — is in the past for those with memory loss. Current thoughts are drawn to distant memories.
Having been exposed to what it takes to be a care manager at a very young age as I watched my mother tend to disabled clients in our home, I followed in my mother’s footsteps. I pursued a social work degree from the University of Hawai‘i at Mānoa and eventually worked at HMSA as a care coordinator, supervisor and manager. After nearly 20 years at HMSA, I realized that my husband and I had become members of the “sandwich generation,” caring for three children and aging parents.
Emmet White—local attorney turned retirement community CEO—offers us insight into the business of aging in Hawai‘i. At Arcadia Retirement Residence he sees firsthand the costs and benefits of senior care.
The first few steps on a care-giving journey can seem fairly simple but within just a few days the path turns rocky and is full of turns and twists that confuse even the most experienced caregiver or capable family member.
Seniors who experience a fall or stroke, or undergo surgery may be surprised they can be discharged from the hospital fairly quickly. That’s good and bad news. Seniors may be happy to leave the hospital but may then be disappointed to learn they cannot return home.
As a dementia educator, I am often asked why people living with dementia (PLWD) ask the same question over and over again. My reply is, “Because their brain is failing.” Every day, PLWDs are going through chemical and physical brain changes. Due to brain failure causing multiple problems with short-term memory, a PLWD can get themselves caught in a loop of asking the same questions. Here are some suggestions for the next time you recognize the start of another loop of questions.
Compassionate care involves addressing the needs of the individual as a whole — their physical, emotional, social and spiritual needs. While providers dedicate themselves to managing the physical symptoms of aging and disease, seniors may experience other pain as well, on a mental and spiritual level. Why is this happening to me? What will happen when I die? Will my family survive my loss? How will I make it through this? The time has come for us to find other avenues to help our family members cope.
Navian Hawaii is grounded in a comprehensive care philosophy, providing an interdisciplinary program of care to support patients and their loved ones’ physical, psycho-social, emotional and spiritual well-being. Complementary therapies are a vital part of this care philosophy.
Evaluate the logistics and duration of the care you want and need. If seniors prefer to stay at home for comfort and convenience, the family should consider long-term, in-home caregivers who are part-time, full-time or can reside in-home. Those needing specialized care or end-of-life care often chose full-time caregivers, whose skills, credentials and fees vary.
Is it the right fit? Will the community support your wants, needs and desires? When you or a loved one consider senior living, questions and options can become overwhelming.
In previous articles that I’ve written for Generations Magazine, I mention the GEMS® states of dementia. There are six GEMS®: Sapphire, Diamond, Emerald, Amber, Ruby and Pearl. The last state, Pearl, signifies that the end of life is nearing. In the Pearl state, bodily functions are shutting down, the person is likely to spend most of their time in bed and may have muscle atrophy or contractures.
As parents age and grown-up children take on more responsibilities in managing their care, unforeseen challenges often arise. The roles of parent and child reverse as adult offspring increasingly manage the often complex affairs of their parents. This change can create tension when family members share more time together, such as at get-togethers and holiday celebrations.
Often, families don’t know where to turn when a loved one suddenly needs constant care. Insurance and Medicare plans may cover very few long-term care expenses — or none at all. In the past, nursing homes were the only option for care outside of the family home. However, now there are many home- and community-based services that help support aging in place.
There are many types of dementia; Alzheimer’s disease is the most prevalent. Dementia is ultimately brain failure. As the brain changes, a person’s skills and abilities regress. The following are four changes you can expect as dementia progresses…
Planning activities for a Person Living With Dementia (PLWD) isn’t easy. I’ve found it challenging to identify activities that peak and maintain the interest of a PLWD. The Positive Approach to Care philosophy states that PLWD need a balance of activities that include leisure, productivity, restoration and self-care.
There are variations of engagement for everyone in any GEMS® state of dementia. GEMS® is a dementia characteristic and ability model. Providing activities that the person is able to do mentally and physically is the key.
Through daily exercise, seniors can combat illnesses such as arthritis and osteoporosis, which can afflict them in their golden years. And as physical health declines, untreated depression can decrease the quality of life. So seniors must remain, mentally and physically active for optimum health. For example, strength training is useful to combat the loss of muscle mass associated with aging, and helps to maintain flexibility and range of motion.
In home care, a question I often get asked is how to care for someone with Alzheimer’s who asks the same questions over and over again. To better understand and manage what’s going on, it helps to first know a bit about Alzheimer’s disease and dementia. Alzheimer’s is a type of dementia that affects memory, thinking and behavior. It’s a progressive disease, where brain cells deteriorate and eventually a person can’t make sense of the world. When short-term memory is affected, it can lead to repetitive behaviors, like talking or asking about the same things over and over. In essence, your loved one can’t recall having already asked a question because of their memory loss.
With so many options available, its hard to know if you chose the right home care provider for your loved one. Here are four essential questions to ask when you’re evaluating your home care partner…
People living with dementia need guidance, human connection and a sense of independence. In my professional practice, we use the Positive Physical Approach. This innovative modality developed by Teepa Snow teaches family caregivers more effective ways to understand and communicate with their loved ones and all people with dementia.
Almost one-third of the adult U.S. population is currently caregivers for an ill or disabled relative. The majority are female and 60 percent are employed part- or full-time. Caregivers need to take time to care of themselves so they stay well enough to care for others. Realize that your own health and well-being could suffer if you don’t take care to be well before tending to others needs.
Do you know anyone who has cancer? Do you know what to say or do? We know — and we are bringing that skill set to the workplace. Typically, we all work hard, provide for our families, plan for the future of our children and look forward to retirement someday. However, with one phone call from your doctor, all of that is put on hold, an unplanned journey begins, priorities and perspectives change — and it can all be overwhelming. Compassion for Cancer Caregivers trains volunteers to step up and step in to provide hope through compassion for coworkers and their families who are battling cancer.
I have spent a decade conducting educational workshops and meeting with individuals transitioning to Medicare or already there. I encourage everyone to explore resources at www.socialsecurity.gov and www.medicare.gov to become knowledgeable before services are needed. I also stress the importance of keeping Medicare cards, medication lists, the names of your physicians and any ongoing health conditions on hand.
At some point in our lives, most of us will be given the opportunity to care for someone with cancer. Even though our experience with cancer may be limited, we may have learned enough to ask initial questions of the patient after the diagnosis is made.
GEMS® is a staging system for dementia. Teepa Snow, OTR and founder of the Positive Approach to Care® philosophy, recreated the Allen Cognitive system of staging dementia with a positive twist. We can now view our Person Living With Dementia as one of Teepa’s GEMS® rather than on a scale of 1 to 7 or on a scale of mild cognitive impairment to profoundly demented.
After gaining years of experience working and caring for the elderly, I can imagine many ways to describe what “aging” means. There are multiple factors that determine if one is considered old. In other words, a high number of years someone has been on this Earth does not define them as being old. In today’s world of medical technology, health products and smarter lifestyles, it may be hard to identify our kūpuna.
As parents age, many adult children step into the role of caregiver. However, for those who live far from their parents, caregiving presents different challenges. Planning, communication and a team approach can significantly improve the process.
As our parents or loved one get older, they may need help or supervision during the day while caregivers are at work, school or other activities. Sending seniors for care during the day may be a difficult decision due to the cost and concern that they may not have “fun” or may be neglected.
Because of the often debilitating nature of heart disease or stroke, the effects of those diseases often impact not just the patient, but family members who are placed in the role as caregivers.
Do you know a Person Living With Dementia (PLWD) who repeatedly asks the same question? Does your loved one obsess about leaving the house so that they can go home? Maybe you know of a grandmother who blames everyone in sight for stealing her items. Challenging behaviors are common among PLWD and care partners are burning out trying to address these problems.
How do family members prepare for the day their senior needs more help? The kind of help that requires loved ones to re-prioritize their lives. If only there were a date set aside for this change in everybody’s life. Planning on change at this level has never been easy because a plan may not be in place.
Every 13 seconds, an older adult is seen in an emergency department for a fall-related injury. Lower-body weakness, difficulties with walking and balance, and vision problems can make a person more likely to fall. Other causes include home hazards and clutter. Having a medical alert system can reduce a person’s risk of not being able to receive timely treatment, by obtaining immediate medical assistance in the event of a fall or emergency.
One of the challenges for caregivers of those with Alzheimer’s and other forms of dementia is finding ways to engage their loved one or patient in tasks that strengthen the ability to recall who people are and what their relationship with them is. Dr. Warren Wong, a local geriatrician with decades of experience working with such patients, took on that challenge and has developed a free iPad app to fill that need: MemorC.
The only state veterans home in Hawai‘i, Yukio Okutsu State Veterans Home, celebrated its 10th anniversary of serving veterans from across our nation in 2018. From celebrating our seniors’ accomplishments to bringing the community to our residents, we know the importance of ‘ohana.
Human beings use five ways to take in data: sight, touch, smell, taste and sound. From the time we are born, we prefer to take in data first by what we see, then hear and finally through touch. Vision, our primary source for processing new information, is controlled by an area in the back of our brain called the occipital lobe. Dementia attacks and damages the occipital lobe resulting in skewed vision, poor depth perception and diminished peripheral vision.
At some point we’ve all had times of forgetfulness or misplacing things. Our keys get lost or we draw a blank trying to remember where the car is parked or what we just ate for breakfast. We can usually sort it out and remember things with some time and patience. But when is forgetfulness or memory loss of concern?
An unexpected life-changing situation can happen in an instant. One minute you’re at a friend’s home, getting ready to enjoy watching UH football, then you slip and fall, and feel excruciating pain. Hours later, on a trip to the emergency room, you learn that you fractured your hip or, even worse, your spine.
As caregivers we reap the benefits of being of service, in a very personal way sometimes, to those that we love. But as the disease/disorders/illnesses rob our loved ones of the spontaneity, intimacy, and active partnership we once had, it also robs us as the caregivers. Our world changes differently than those that we are caring for.
Today, more seniors are receiving care in their homes for medical conditions. Many receive it following a hospitalization or discharge from a rehabilitation center and have complex needs. Seniors who require them may have difficulties adjusting to their care and can benefit from transitional care during this period.
When a senior member of your family is in need of 24/7 care, it is fortunate that Hawai‘i has many professional, caring and dedicated homes and facilities to welcome them. What every family wants to know is: “Will my mom or dad be happy living in someone else’s home, eat right, and stay mentally and physically strong?”
People living with dementia (PLWD) have challenges with verbal communication: language comprehension, speech production, and vocabulary. But they are not unconscious to what is going on around them. Even as the brain declines, emotional intelligence is preserved. PLWD take in data visually rather than auditorily and react to what they think is happening. As caregivers we must remember that PLWD are really doing the best they can with the abilities they have left.
Home healthcare providers are often asked what makes a better caregiver. The answer is that, while many factors come to mind, an interest in learning is high on the list, and essential to a caregiver’s progress. For example, an important role caregivers have is recognizing when an individual’s health condition is changing. Those who can reflect and learn from these changes often develop into better caregivers.
Former first lady Rosalynn was a caregiver herself and she believed that family caregiving is a cycle of life that touches everyone. Here, four people, each at a different point on the cycle, share their care stories from the heart, offering words of wisdom and points of caution. As you read, consider your journey on the Cycle of Caregiving. Where are you? Are you prepared?
I visited Kīlauea several years ago with my hula sisters for the Merrie Monarch Festival. Walking toward the crater to bear ho‘okupu (offering) for Tutu Pele, my lungs suddenly tightened up and I was literally gasping for air.
I don’t know if anyone is really prepared for family caregiving — it all happens so suddenly,” says Terri Jorgensen of Maui. She became a family caregiver in 2016, when Maui Memorial Hospital discharged her 101-year-old Grandma.
In home care, a question I often get is how to care for someone with Alzheimer’s who asks the same questions over and over again. To better understand and manage what’s going on, it helps to first know a bit on Alzheimer’s disease and dementia.
In the last issue we discussed how people diagnosed with chronic respiratory failure and chronic obstructive pulmonary disease (COPD) are at higher risk for infection. This issue, we focus on ways to ease their breathing problems.
It’s a mistake for family caregivers to forget about their own well-being while caring for their loved ones. Many feel guilty for taking time off for a spa day or a staycation. I encourage them to accept it’s perfectly OK to get away and return reinvigorated and refreshed.
Despite the great advancements in retirement community resident care in recent years — some through government involvement, but most through business owners seeking to create a better quality of life for seniors — one of the challenges faced when discussing senior living options is the negative stigma that immediately comes to mind about “assisted living.”
Many family caregivers come home to Hawai‘i to assist aging parents. But how about caregiving overseas? When my mother died, Dad was 93 and slipping into dementia. His younger brother had retired to the Philippines, with his wife and insisted on providing care for his older brother, who had done so much for his family.
How does one keep the interest of the elderly? It can be challenging. Nature walks, painting, board games, puzzles, word and picture games are among the typical activities of the elderly.
If you’re like most of us in Hawai‘i, you have no clue what “skilled nursing” means unless you have spent time in a Skilled Nursing and Rehab Facility (SNF). Some think it is the last stop, a depressing place where sick people go when they can no longer take care of themselves.
Last November, my mother’s side of the family flew to Las Vegas to see my cousin get married. Family trips usually include everyone, from newborns to our wise elders. So, of course, grandma came along for the trip!
As a handpicked Labradoodle, Ruby is highly trained and recognized by the American Kennel Club (AKC) as a certified therapy dog. She loves her time visiting children and adults in hospitals or in their homes, and she enjoys the special relationships she has meeting and greeting everyone.
Ever think about growing old? Even when we become caregivers for aging loved ones, or start to feel pain in our joints, or experience the “where did I leave my keys?” and “what was I gonna say?” moments, we may still not attribute them to aging.
Most seniors I meet say they prefer to age in place and live at home for as long as they can. Who wouldn’t want that, right? But living out your life safely at home may require a bit of help and experience. Home healthcare is particularly suited here; clients can manage their care with medical professionals to help make safer and more informed decisions.
Serving Senior Veterans by Eileen Phillips, RN, Attention Plus Care from the Oct-Nov 2016 issue of Generations Magazine, Hawai‘i’s Resource for Life
Senior Travel Assistance by Eileen Phillips, RN, Attention Plus Care from the August-September 2016 issue of Generations Magazine, Hawai‘i’s Resource for Life
Animal Assisted Therapy by Eileen Phillips, RN, Attention Plus Care from the June-May 2016 issue of Generations Magazine, Hawai‘i’s Resource for Life