Last week’s blog looked at caregiving during the COVID-19 pandemic. For the most part, choices for caregiving for a loved one in long-term care or at home has been difficult. It is never easy under the best circumstances. Unfortunately, the COVID-19 pandemic highlights the challenges faced by caregivers, both formal and informal. This week, we review situations faced by caregivers and potential policies that could help alleviate the caregiving burden.

Caregiving Challenges in Long-Term Care

For the formal caregivers who work in long-term care, COVID-19 has made a challenging work environment more so. For example, the shortage in personnel, exacerbated by a high turnover rate, made a difficult situation worse. It is usually an ‘all hands-on deck’ environment. With COVID-19, the need for personnel to take on additional responsibilities increased. Staff work overtime, and then some.

Addressing the Needs of Long-Term Care Staff

If direct care workers were paid a living wage, the turnover rate could be lessened. Career ladders would also offer an incentive to stay. Better training and support for caregivers would help make their jobs easier. Long-term care staff can use tools to help support their work with residents who have challenging behaviors. Medication to chemically restrain residents is not a feasible approach. Using alternative methods such as music, pet, and touch therapy need to be provided through long-term care staff training.

The Challenges of Family Caregivers

Family caregivers face multiple challenges. First, caregivers may be working outside the home in addition to being a caregiver. Second, they may also be caring for children as well. Third, they have to be concerned and vigilant with any possibility of exposure to COVID-19 and the implications that follow. Balancing work and family responsibilities is always stressful, but adding COVID-19 as a factor makes it so much worse.

Supporting Family Caregivers

Work environments need to offer more flexibility in caregiving for family members. Paid leave, similar to that for new parents, should be extended to family caregivers. Also, offering pay for caregiving may also offer support for caregivers who cannot work outside the home but need to earn wages.

While the policies are not inexpensive, and not all companies or states are currently positioned to offer these benefits, they are still valuable. We need to value the work given by both family and long-term care staff. Enacting and paying for these policies would accomplish that.

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

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

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