Category Archives: Family Caregiver

The Art of Caregiving: Going at the Right Pace

Caregiving has been defined as the willingness to go at another person’s pace. Just like a pace car in auto racing, there is the person who sets the pace in caring, and the person who follows along. The pace car in racing sets the tempo of the other cars before the race officially begins. The person setting the pace in caregiving can be the care receiver or the caregiver. Ideally, a care receiver with dementia should set the pace, with the caregiver following.

Tell-tale Signs of Moving Too Fast

A care receiver with dementia may not want to do what is needed, such as eat breakfast or go to the doctor. The care receiver will show signals and cues to relay their feelings. For example, the care receiver may become still, unwilling to move. The care receiver may become agitated. There may be repeated questions and reluctance. This is especially true if the caregiver is in a hurry.  Attempting to get a care receiver to move at a quicker pace is not helpful or beneficial. Also, a raised voice or attempting to physically move the care receiver along at your pace will not work.

A person with dementia will respond to your cues and match your feelings. If you start to get stressed out, so will your care receiver. When things are not progressing, it is time to slow down the pace. That can mean acknowledging the care receiver’s feelings and providing support. It can also mean listening and playing detective to determine the feelings behind the behavior.

What’s Your Caregiving Pace?

It also helps if you are pacing yourself as a caregiver. Are you taking on too much in your care receiver’s care? Who else can provide help? Sometimes a person with dementia responds better to one person than another. Finding another person who is better suited to take the care receiver to a doctor appointment can be helpful.  If having someone come to the house to be with your care receiver to look at photos for reminiscence, to share a meal, or just be there, you can take a break.

Just like a pace car needs to have oil changes, full tires, and an engine that works, it takes maintenance and care to provide care for your care receiver and yourself. Both need care and support. When you are attempting to work with your care receiver, do some diagnostics to check where your care receiver is. Are they tired? Could they be hungry or thirsty? Are they in pain? What are their triggers? What are yours? By considering these, you can help your care receiver and yourself in the caregiving race.

It may feel like you are constantly racing. Despite the need to get everything done, take time to slow down, even if it’s for a few minutes during the day at different times. Take care of yourself to take care of others at a pace that works for you and your care receiver.

Kathy Dreyer, Ph.D., is a Grant Manager at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

Persevering During the Ongoing COVID-19 Triathlon

The sustained presence of COVID-19, including the fluctuating easing and reinstating of restrictions, makes it difficult to feel hopeful. As a result, it is critical to identify ways to support our mental and physical wellbeing. It will help us as we work to keep persevering.

Wishful Thinking

When the shelter-at-home orders were put in place earlier this year, the thought was that life would get back to normal anywhere from a few weeks or months. We thought things could get better in the fall, possibly the summer. At that time, the COVID-19 quarantine felt more like a sprint.

As time progressed, we might have thought that the COVID-19 quarantine was more of a marathon, and not a sprint. At this point, we now know that the COVID-19 quarantine is more of a triathlon, not a marathon.

Planning ahead

Preparing for a triathlon would be daunting at best, to say nothing of actually competing in one. As a result, athletes who compete in a triathlon must prepare in advance, somewhere between three to six months at least. For caregivers, both family members and caregivers in healthcare, having any lead time to prepare  would have been helpful. Unfortunately, there were limits to being able to prepare adequately. Who knew exactly what we needed to prepare for? Moreover, who knows how long this quarantine will continue?

Persevering

How can we persevere during this uncertain time? There are some parallels in training and preparing for a triathlon and persevering during the COVID-19 quarantine. Some of the ways to persevere can be beyond our control, like making sure you have the right equipment for competition. Other ways to persevere include keeping your body fueled and properly hydrated. Another way to persevere is to find someone to support/coach you when you hit a wall. Also, finding what works for you can help refresh and renew your spirit.

According to the Chinese philosopher Lao-Tzu, the journey of one thousand miles must begin with a single step. While we don’t know how many steps we must take until this COVID-19 journey concludes, we know we must keep going.

Kathy Dreyer, Ph.D., is an Advisor at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

Creating Feelings of Belonging Through Touch

Several months ago, pre-COVID 19, I took a dance class. There were only about 8 or 10 women in the class. For the most part, we did not know each other. Although I have no identifiable dancing skills, I had the feeling of belonging there.

When it comes to completing technical dance moves, I have two choices. I can either coordinate the movement of my hands or my feet, but not both. But there I was, moving and grooving with other women. I was trying something new having fun. Each class, the instructor would put us all in a line facing the mirror. We danced together, performing the same moves. Now, I have never been mistaken for a professional dancer at any time in my life. When that moment came, I felt like I was enjoying a moment like performing and of belonging.

WHERE DO I BELONG?

The feeling of belonging can be easy or hard to get. In my dance class, I chose the time and activity. I was with other women around my age and ability. The instructor encouraged us. We all enjoyed the time together. For residents in a nursing home, how do we help them feel they belong? How do we know they feel they belong? It’s especially hard for residents with dementia, and more so if they did not select the nursing home. They likely have questions: where am I? Why was I moved from my home? Why am I here? Who can help me? Residents might not recognize family members or friends. They can have trouble communicating their needs. Also, understanding the answer they get may be difficult, especially if the answer they get does not help them.

WHAT MATTERS MOST- THE FEELING OF BELONGING

According to Abraham Maslow’s Hierarchy of Needs, feelings of love and belonging comes from friends and family. It is having a feeling of intimacy and connection. It comes after meeting physiological needs and the need for safety and security. For those of us caring for loved ones, especially those with dementia, we can provide shelter, food and water. It can be hard to help our loved ones feel safe and secure when feelings of fear and uncertainty about their reality spring up. Even with the physical environment being set, the social environment also takes an important place.

HELPING RESIDENTS BELONG THROUGH TOUCH

Finding ways to connect with residents and loved ones is crucial, especially at this time. One way is through touch. The power of touch supersedes all other forms of communication. It expresses what cannot be said. Touch communicates peace, acceptance, care, and support. It can be as simple as holding a resident’s hand or a back rub. Repeated forms of touch provide reassurance and support. It is more uncomplicated than any dance move and provides more joy. As the recent blog by Julie Boggess states, it is more important now, more than ever.

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com

Easing COVID-19 Restrictions: Going Forward…Moving Ahead?

The Centers for Medicaid and Medicare Services (CMS)  recently released recommendations  for state and local officials to gradually reopen nursing homes. The CMS recommendations guide officials to evaluate the feasibility to ease COVID-19 restrictions. State survey agency and state and local health departments participate in the decision-making process. CMS provides questions to answer to assess next steps.

Decision-making questions to answer

The key questions to answer are:
What is the COVID-19 case status in the surrounding community?
What is the COVID-19 case status in the nursing home?
Does the nursing home have adequate staffing?
Does the nursing home have access to adequate COVID-19 testing?
Is there universal source control (e.g., residents and visitors wear a face covering)?
Does the local hospital have the capacity to accept transfers from nursing homes?

Also, the recommendations include additional criteria for implementation, visitation and service considerations, and surveys that will be performed at each phase.

Easing COVID-19 Restrictions

AARP provides additional information about the next steps in reopening nursing homes. Fortunately, progress is already taking place in some states. For example, in Massachusetts, visits are allowed in some communities when scheduled in advance and must take place outside.  Also, visits must include an employee.  Additionally, only two people can visit a resident while wearing face masks.

In some ways, the new recommendations offer a glimpse into the new normal.  It is likely that infection control procedures will continue indefinitely. The CMS recommendations only address protection for older adults and staff,  not the effect of the COVID-19 restrictions. As a result, it is mandatory to implement plans that focus on the long-term effects of the COVID-19 quarantine.

Supporting Staff and Residents

We must address the effects of the COVID-19 quarantine on residents and direct care staff.  Residents’ routines are disrupted. For example, residents cannot participate in group dining.  Also, family and friends are unable to visit.  As a result, residents are isolated. Furthermore, staff members work overtime to compensate for residents’ additional emotional needs. Also, staff members cope with exhaustion and compassion fatigue. Furthermore, direct care workers are not valued but are unquestionably invaluable.

Going Forward – the Next Steps

Now is the time to learn from the COVID-19 restrictions experience. We must support residents and staff to cope with the after-effects of the COVID-19 quarantine. Moreover, we must provide higher wages and more respect for direct care workers. Most importantly, they provide critical care and compassion to older adults in long-term care.  As Julie Boggess’ blog emphasizes, “these workers and the residents they care for deserve better – much better.”

Kathy Dreyer, Ph.D., is the Director of Strategic Projects at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com