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Caregiver tips for sheltering in place

Like many of you we have been ordered to “shelter in place” (Beth in Michigan, Laurie in California) to help curb or eradicate the COVID-19 virus. Although it is an inconvenience, we cannot help but think of all the caregivers for relatives with dementia.

Adult Day Centers are closed. Some family members are working from home, making it difficult to give full attention to their relative. Family members and friends can only visit with relatives in assisted living or skilled nursing communities through the window or on the phone or, in some cases, not at all. Caregivers caring for a partner or a parent at home may find it especially stressful as there may be no one who can stop by and provide a break.

Cancelled flights have separated adult children living a distance from a parent with dementia. From a daughter who lives far away from parents who are home alone, desperate about what to do after her flight was cancelled:

“I have not seen my parents in 6 months and was planning to visit in late March until the COVID-19 virus. My mom’s doctor said contracting an illness like pneumonia could have devastating effects on her FTD (Frontal Temporal Dementia) prognosis; I presume COVID-19 could be a similarly bad situation. My dad is with her, but he has heart problems and an underlying respiratory condition. What would happen if one of them became ill with COVID-19? I am frantic not knowing what to do.”

Whether family members live with, close by or far from their relative with memory loss, it can be a stressful time. Here are some suggestions that may help you:

Staying healthy

  1. Know signs and symptoms of the virus. If you suspect your relative may have COVID-19, contact their doctor immediately. The number of testing sites offering testing is increasing daily. Learn more at the Center for Disease Control website or your county health agency.
  2. Know other illnesses that may cause increased confusion or agitation in people with dementia: Infections, dehydration, fever, and pain. If in doubt, call your doctor.
  3. Minimize your relative’s contact with other people. Older adults are more vulnerable to this virus than younger populations.
  4. Wash hands thoroughly throughout the day. Having favorite music in the background or washing hands together may help your relative be more willing to wash her hands. If this is not possible, try using hand sanitizer often. Check the Environmental Protection Agency website for recommended products to sanitize surfaces.

 Logistics

  1. Ask your relative’s doctor about filling prescriptions for more days. This may reduce the number of trips to the pharmacy. Pharmacies are considered an essential business and are open.
  2. Some essential businesses are abbreviating their hours. Call ahead if you are planning to go to the grocery store, the bank, etc.
  3. Some home care agencies are open for business. If you are feeling more stressed, and a home care agency is already providing care to your relative, consider asking for more hours. If you are not using home care services, consider calling and asking if they are taking new clients. There may be a shortage of home care workers, but it is definitely worth asking.

Caring throughout the day

  1. The book Best Friends Approach to Dementia Care, by our dear colleagues David Troxel and Virginia Bell, offers information and strategies to help caregivers get through the long days of caregiving. Caregivers have and will surely find this timeless book helpful.
  2. A person may become more confused because their routine has been disrupted. Try to stick to the same daily routine each day. If confusion leads to behavioral problems, our book Coping with Behavior Change in Dementia may be a helpful resource.
  3. Eliminate coverage about the virus on your TV or computer. People with dementia may not understand it and become frightened or agitated hearing about the seriousness of the virus.
  4. The stress you might be feeling is contagious and your relative may feel it too. Although she may not fully understand COVID-19, she may feel upset which can lead to a change in behavior such as agitation or sleeplessness.
  5. Take walks, keeping a safe distance. Being outside and getting some exercise can reduce stress for both of you.
  6. Share activities. Look at old photos together. Try a jigsaw puzzle. Involve your relative in a household activity such as dusting, vacuuming, etc. Try doing a favorite hobby together, or baking cookies, cleaning the toolbox, sorting clothes or coins.
  7. These are stressful times for all of us and it is important to take care of yourself. Yoga, meditation, a short walk, eating and sleeping well are very important right now. Reach out to a friend on the phone. Scheduling FaceTime sessions with friends and other family members can help with feelings of social isolation.

Caring for yourself

  1. Many Alzheimer’s Association chapters are offering virtual caregiver support groups. Visit Alz.org to see if the chapter near you is offering a group.
  2. Ask for help. Take help that is offered to you. Neighbors, friends, high school students, and Eagle Scouts are reaching out to do errands such as pick up groceries or medications, help with outdoorhandling transitions in dementia care chores, or take a walk with your relative (If this is offered, ask the volunteer about any possible exposure to others within the past 30 days.)
  3. Some therapists are offering phone or video therapy sessions.  There are also hotlines if you are feeling desperate, including the Alzheimer’s Association’s 24/7 helpline, 800.272.3900.

We wish you all the best as our country goes through this difficult time.  Hoping for all caregivers and their relatives to stay well.

 

Laurie White & Beth Spencer, Co-authors, Coping with Behavior Change in Dementia and Moving a Relative and Other Transitions in Dementia Care.

 

How can an ombudsman help my relative and our family?

An ombudsman promotes and protects the rights of residents of nursing homes, assisted living and small board and care homes. When a resident has Alzheimer’s or another type of memory loss or dementia, their focus is on keeping everyone safe.

This is especially true when residents are experiencing behaviors that are challenging.  When a relative with memory loss experiences challenging behaviors—agitation, for example—in your home, your family is the one most affected. When your relative lives in a community, those behaviors can affect others. As well, your relative may be affected by someone else’s behavior. This is a tricky situation. Enter the ombudsman to help sort it out.

Charlie’s wife Lee, a resident in an assisted living’s memory care community, was in the advancing stages of Alzheimer’s disease. She began to be verbally abusive to residents who “were sitting in her chair” or “in her way” as she walked down the hallway. The staff had difficulty managing her behavior and protecting the other residents from her loud verbal assaults.  Another resident’s family filed a complaint with the Ombudsman’s office about Lee’s actions towards her mother. After observing Lee’s behavior, the Ombudsman met with the Director and Charlie to develop a plan of care for Lee. The plan included training staff on how to approach and respond to Lee when she was agitated. The Ombudsman requested staff to communicate and document Lee’s behavior daily. After a few weeks, Lee appeared to respond more favorably to staff and other residents.

What is an Ombudsman?

An Ombudsman is the official who is responsible to ensure that residents are safe and have the rights that are required under The Nursing Home Reform Law of 1987. This law ensures that nursing homes “promote and protect the rights of each resident.” In most states, this law is extended to residents who live in assisted living and small board and care homes.

What does an Ombudsman do?

The primary responsibility of Ombudsman programs is to ensure that residents in long-term care communities—nursing homes, assisted living and smaller board and care homes—have quality of life and care that is needed. An Ombudsman does this by responding and resolving complaints that are received from consumers, usually residents and family members.  An Ombudsman’s advocacy efforts are based on the belief that residents who live in long-term care facilities have the same rights as those who live in the broader community. Ombudsman programs are often referred to as the ‘watch dog’ for long-term care residents.

How do I find an Ombudsman in my area?

To locate your state or local office, contact the National Citizens Coalition for Nursing Home Reform. Or you can search for the Ombudsman program in your area by state or county, for example, Michigan Ombudsman or Los Angeles County Ombudsman. Contact information and responsibilities can also be found on a poster that residential care communities are required to post in their facility.

What kind of things can an Ombudsman help with?

When a resident or a resident’s family have not been able to resolve an issue or concern ‘in house’, a complaint can be filed directly with the Ombudsman program, who will then investigate and attempt to resolve the reported issue. The Ombudsman office can tell you the type of complaints that are handled and what has been filed for facilities in the area. This can be useful information for you as you choose a place for your relative. It can also be helpful to monitor this list once your relative lives in a facility.

The services offered by Ombudsman may vary from state to state. There is no fee for Ombudsman services. Generally speaking, the Ombudsman office can help you:

  • Resolve concerns or issues regarding the quality of care for your relative or other residents
  • Investigate suspected physical, emotional or mental abuse or neglect
  • Investigate possible financial abuse
  • Investigate inadequate staffing or training for the level of care needs of the residents
  • Discuss and resolve a grievance or issue with staff and family members by attending a care planning meeting
  • Provide educational materials to help understand and clarify resident rights as well as policies and procedures for long-term care facilities.

When situations are complex and feelings are running high, an ombudsman offers a way to help sort things out. For families of people with memory loss, this can be a real lifeline.

Beth Spencer and Laurie White

 

Coping With Behavior Change in Dementia

Coping With Behavior Change in Dementia

A Family Caregiver’s Guide

Beth Spencer & Laurie White

This handbook is intended to help families understand possible causes of common behavior changes and learn to respond more effectively to 12 dementia behaviors that care partners find challenging, including repetitive actions, agitation and incontinence. It is our firm belief that many of the most challenging behaviors may be minimized when caregivers learn how to identify root causes and try strategies that are known to help some people with dementia much of the time. This book is based on the premise that we all have basic human needs, including to be loved, comforted, to be productive members of our community and to feel as though we belong. We all need emotional warmth and a sense of identity. These needs are no different for someone living with cognitive loss.

There are also sections about communication and problem-solving, a glossary and an extensive list of books, videos and other resources for people with dementia, family caregivers and health care professionals. Each behavior includes case examples from families we have worked with as well as suggestions for talking with your relative.

“Information on dementia can be so wide spread and confusing. This book provides an easy to read and organized approach to exactly what its title states. As an RN and caretaker to my husband diagnosed with early dementia I am able to use this book as an excellent reference in both my professional and personal approach to people with this disease. In my personal inquiry about sex and dementia, I found little information on the web other than blogs. This book answered many of my questions to better cope with my own ever changing relationship. This is a “must have” book and guide for anyone facing dementia as a caretaker.” – Patricia Lesho Thompson, wife and caregiver

“This is a remarkable resource for family caregivers and professionals working with people struggling with dementia. The authors are unafraid to tackle sensitive concerns from difficult behaviors to loss of intimacy. It provides comprehensive and practical non-pharmacologic solutions for caregivers to be successful in the home setting. A must read!” – Dr. Bruce Miller, Director, University of California, San Francisco Memory and Aging Center</blockquote/>

“Laurie White and Beth Spencer have given both professional and family caregivers an exceptionally helpful and respectful resource that transcends generic behavioral management tips by laying a foundation that behavior is first and foremost, a form of communication that must be understood. The breadth of the authors’ wisdom is reflected in their sensitive, comprehensive, and extremely practical approaches to the understanding and management of common and often confusing situations surrounding tasks of daily living, mood changes, communication, and intimacy. I highly recommend this outstanding resource and am most grateful to have this very readable guide to share with families.” – Lisa Snyder, LCSW. University of California, San Diego. Author- Living Your Best With Early-Stage Alzheimer’s: An Essential Guide and Speaking Our Minds: Personal Reflections from Individuals with Alzheimer’s

“What I would have given to have had this handbook by my side as I cared for my beloved husband as he struggled with Lewy Body dementia! Written in a jargon-free style, the book addresses the practical issues that dementia caregivers regularly face. Possible causes and a myriad of suggestions are offered for each behavior in a helpful bulleted format. Brief vignettes accompany each topic, giving it a real-life illustration. To those caring for someone with dementia, this book will become your new best friend!” – Tamara Real, spouse and adult child caregiver

“I want to express my sincere thanks for your work on this book. During the years that EMU distributed Understanding Difficult Behaviors, it was clear that caregivers were in dire need of guidance and support. This new book is beautifully and thoughtfully organized. It is so evident that the authors have a vast amount of experience in the area of dementia and caregiving!” – Elizabeth Schuster, PhD, Professor, School of Social Work, Eastern Michigan University

Coping with Behavior Change Look InsideCoping with Behavior Change Table of Contents

For bulk order prices ( 20+ copies), please Contact the Authors.

Buy This Book


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