Tough Choices from Tender Hearts: Caregiving During a Pandemic

About a month ago, the Centers for Medicare and Medicaid Services (CMS) issued new guidelines that advocate family visitors to return to nursing homes. At this time only three states are not allowing visits. The guidelines provide specifics on how to visit a family member while remaining safe. Unfortunately, it still means making tough choices between a resident’s mental and physical health.

Reducing Social Isolation

These guidelines highlight the need for residents in long-term care to see family members and loved ones. With these guidelines in place, it helps to bring loved ones back together. What about caring for family members who remain at home? What are the recommendations for keeping everyone at home safe?

Guidelines for Home Visits

In May 2020, AARP published an article on steps to take in safely visiting older family members in their home. Those steps included keeping visits short and wearing protective masks and eyewear when possible. The article also suggested staying away if you feel sick, keeping younger family members away for the time being, and visiting while outside.

Making Tough Choices

Despite the good intentions of these guidelines, serious questions are raised. How are caregivers managing? They are making decisions based on what is best for their family members while balancing issues of safety, health, and protection. These kinds of decisions are not new in caregiving.

The combination of trying to provide care while maintaining social distance and health is even more difficult. And caregivers are also conflicted about bringing love ones into a nursing home and out of the home environment, even though it may be the best possible option.

Lessons Learned?

The COVID-19 pandemic highlights the overwhelming need to address caregiving and those who provide it. We need to take the lessons learned from this ongoing experience and make better options for caregivers, both paid and unpaid. Caregivers continue to continue to give their best. It’s more than past the time to focus on their needs and provide better choices.

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

People with Dementia: Wanting to Be Anywhere but Here

In reading news or blogs online, you can find people expressing one of two opinions. Some people express a desire to go back to the time before COVID-19. Others note feeling restless until COVID-19 is over. It’s as though we want to ‘be’ somewhere else. It is natural that we feel lost. We feel we have limited or no control. We are prohibited from doing what we would like to do.  Reflecting on these valid feelings, it is easier to understand how people with dementia must feel on a daily basis.

Living in Memories

For people with dementia, the long-term memories, the ones with the most feelings attached, are the ones they feel and remember most and best. Someone with dementia may frequently ask about people who are long gone. They also may continually ask about certain events or everyday times from long ago in that person’s life. People with dementia have security in memories from the past. Those memories are accompanied by deep feelings. Is it hard to understand why they would want to be there, instead of here, where they may not remember someone’s name or face?

Where Am I Supposed to Be?

In supporting people with dementia, there might be a tendency to reemphasize what day it is, what time it is, and where someone is. There may be a perfectly good reason for reorienting someone, especially if it helps to accomplish a necessary task or diminishes agitation. It is important to remember why it may be hard for someone to remember where they are, or even why they need to.

Reminding someone of things they do not remember, bringing them back to the present, can be upsetting. It may reinforce feelings of not being in control, feeling lost. If those of us who do not have dementia do not want to be here, going through this time, why would we get upset with someone with dementia who cannot get back ‘here’?

Honoring Memories, Acknowledging Feelings

By honoring what persons with dementia remember, we are respecting their present time. Their present time holds the memories that bring them comfort. As a result, that may be where they want to be: not here, but there. By changing their focus to the present can bring them pain and frustration. We remember who they used to be. They likely know they are not fully that person. As a result, there is pain on both sides.

Thank goodness for the direct care workers . They meet people with dementia where they are. These individuals can accept them for who they are. May we continue to honor our loved ones with dementia and those who help us in our caregiving journeys.

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

Life and Caregiving: Thoughts from Dr. Seuss’ Book

Dr. Seuss’ book, Oh! The Places You’ll Go! is a gift that is given at special occasions. Usually, it’s suitable for graduation or another momentous event. The reader is given an encouraging review of life’s ups and downs. It makes me think that this book might be a good resource for caregivers and caregiving.

Life’s Balancing Act

The book talks about life being a balancing act. Caregivers certainly know about balancing life in caregiving. It’s always difficult to keep everything going. As a caregiver, you may have a full-time job, children, and other responsibilities in addition to being a caregiver It’s a constant struggle to care for others and yourself in caregiving. The book mentions that you will fight against yourself at times. That certainly rings true in being a caregiver.

Highs and Lows

As caregivers, there are happy times, and low times. Dr. Seuss’ book mentions slumps, and un-slumping yourself.  As a caregiver for my mother, the good times came when she had energy, was in the company of loved ones, and was able to go out to dinner. The low times were during and after medical treatments and doctor visits that held bad news. There were times I made mistakes that I regret to this day, and times I could genuinely tell I was helping.

Dr. Seuss’ advice

The book offers some thoughts on moving along:

“So be sure when you step, Step with care and great tact.

And remember that life’s A Great Balancing Act.

And will you succeed? Yes! You will, indeed! (98 and ¾ percent guaranteed)

Kid, you’ll move mountains.”

Caregivers do move mountains. There are many challenges and obstacles. There are also moments of grace, peace, and joy. For all of the caregivers out there, continue on.

As Dr. Seuss says,” And when things start to happen, don’t worry, don’t stew. Just go right along, you’ll start happening too!”

Thanks to the caregivers who keep going right along.

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

Carrying the Load: Keeping Motivated in Trying Times

Carrying the load of the COVID-19 quarantine continues on. There are some signs of hope on the horizon for those living in long-term care communities.  States are permitting visits, with a handful of states still only allowing compassionate care visits.  But with a majority of restrictions still in place. keeping motivated to carry on is difficult.

Keeping Motivated

Motivation can be hard to sustain. Burnout, compassion fatigue, frustration, and the emotions of all that has happened in the past seven months can be overwhelming.  While the changes in visitation provide much-needed relief for residents, the work of direct care workers to keep communities safe and sanitized continues.

Responding to Challenges

While challenges remain, everyone has choices and some control over their responses. The load is heavy and burdensome, but how you respond is key. According to Lou Holtz, “It’s not the load that breaks you down, it’s the way you carry it.” How do you carry such a heavy and seemingly unrelenting load?

Carrying the Load

Part of your response can be to put down the load when you can. Self-care is critical. Breathing is essential. Taking long, deep breaths for as little as five minutes can help relieve stress. Engaging in exercise, especially a walk outside, can help. These practices can help you maintain energy and motivation.

Another way to carry the load is to remember you are not carrying it alone. Share your feelings and burdens with someone who understands. Talk to a colleague who can relate. Remember that there are several people keeping direct care workers and essential workers in prayers and positive thoughts.

Also remember there are several people who appreciate your work and dedication. By carrying the load, you are helping families carry their caregiving loads, too.

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

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