Category Archives: Family Caregiver

Broken Heart Syndrome: Another Effect of the COVID-19 Pandemic

As if life could not get worse. A recent study suggests more people are suffering with stress cardiomyopathy during this COVID-19 pandemic. Stress cardiomyopathy is also called broken heart syndrome.

SYMPTOMS OF BROKEN HEART SYNDROME

Symptoms are similar to that of a heart attack. There is chest pain and shortness of breath. Low blood pressure and an irregular heartbeat are other symptoms. There are not usually any blocked arteries.

CAUSES

The causes of stress cardiomyopathy are not fully known. However, stressful events can cause broken heart syndrome. As a result, a person can be affected in both their body and heart.

The COVID-19 pandemic is obviously stressful. Additional stress comes from restricting visitors in nursing homes.  Stress also comes from changes in residents’ routines and activities.  Residents are experiencing increased stress. Direct care workers are also dealing with their own stress, their residents’ stress, and family members’ stress.

ESSENTIAL AND NONESSENTIAL

At this time, only essential workers are allowed access into the nursing home. Why are family members not considered essential? The Centers for Medicare and Medicaid Services is starting to allow nonessential personnel into nursing homes, under specific guidelines. What about family members, friends, and other loved ones? Safety is important. Unfortunately, safety does not always ensure wellness or wellbeing.

Allowing family members to visit, either as essential or nonessential personnel,  can improve the wellbeing of direct care workers and staff. It gives them a break from needing to support the entirety of each resident’s emotional needs. It also helps the residents feel less isolated and stressed.

Balancing safety against wellbeing is a challenge. Until we support residents’ health, safety, and wellbeing, we will see the illbeing and other negative effects continue even after this COVID-19 pandemic ends.

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

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