Have you ever known you were right about something? You were so sure you were right, but everyone else made you feel you were wrong?  It is a terrible feeling to know you are right, but everyone else says you are wrong. It is even worse to have to do something that feels completely wrong.

How has it felt to be a person with dementia at this time? If wearing masks, continually washing our hands, and being socially distant feels wrong to us, how must it be for a person with dementia? When wearing a mask feels wrong, what do they do? What happens when routines change again? Whether they are at home or in a community, the restrictions and changes have been a lot to take for those with dementia. It is also stressful for their care partners.

Making Changes

Now that the restrictions are slowly being altered, it may be even more uncertain for the person with dementia. These changes also affect those who care for them. Both care partners are trying to adjust.

If a person with dementia is confused about these changes, they may be trying to understand what is changing. They may feel uncertain, becoming combative, agitated, or withdrawn.

Making the Best of It

What do you do when someone you care for, someone you love, feels so strongly about something, but you cannot agree? Or, what if  you have something in mind to help them, but they are resistant? How do you resolve the impasse?

Saving Sanity, Reducing Stress

The Family Caregiver Alliance offers some communication tips. It is also helpful to think about the person with dementia and what the trigger points are. Remember to ask yourself if the argument is worth agitating the person with dementia. Also, think about your own sanity, what your stress level is, and how important it is to convince your loved one or resident. Any time a person with dementia can be reassured and feel secure is the right choice. That option always feels right to both care partners.

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

As the story goes, a traveler sees three bricklayers. He asks each one what they are doing. One says “laying bricks,” another states that he is “building a wall,” and the third person says, “I’m building cathedrals.” What an interesting view of work, purpose, and legacy.

What are we doing?

These days, at this time, many of us may be thinking about our work, our purpose, and our legacy. Why do we do what we do? What do we see as our place in this world? If you are working in long-term care, it is an especially valuable question to ask, especially when our role in long-term care is already difficult.

Choices and challenges

There are challenges in balancing safety versus quality of life. These challenges compel us to think about existing versus thriving, surviving versus living. The choices we make on behalf of the older adults we serve have a significant impact on their lives. For those who are the most vulnerable, we have to take the most caution. But how do we decide? And, at this time, are we able to make those decisions? Or are we required to follow some other guidance, more stringent regulations, in order to promote physical health?

Living or Surviving?

No matter what decisions are made, the people who serve and work with older adults living in long-term care communities still make a difference. Even as they adhere to guidelines that may emphasize protection and create social isolation, their role is even more important. They are not just keeping people safe, they are responsible for keeping older adults alive and thriving, while maintaining their wellbeing under some of the most difficult circumstances. And the end is not in sight.

Leaving a Legacy

We need to support our caregivers in long term care with a living wage, more respect, and more empowerment. Direct care workers provide the largest balance of care for older adults. We should consider our collective legacy in how we treat and care for the most vulnerable people in our population. We cannot afford to treat long-term care workers feel like they are only laying bricks when they are  responsible for building cathedrals.

What do we want our legacy to be?

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

One of the best things in life is a road trip. Taking a drive to a new place, or a familiar one, can be an adventure. One of things you can always expect is to hear during a road trip is the question, “Are we there yet?” It can seem to take an eternity to reach a destination, especially when we can’t wait to get there, wherever that is.

How are we getting there?

Another familiar travel-related phrase is, “it’s not the destination, it’s the journey.” That phrase is supposed to help give us perspective, to help us focus not just on where we are headed, but on how we get there. In this time of the coronavirus, we are compelled to focus on where we are going, as well as how we are getting there. But what is there? How will we know when we will get there? And how long is that supposed to take?

Where are we headed?

For people working in long term care and the residents they support, wherever “there” is, we cannot arrive fast enough. There have been some restrictions lifted, some changes, but everything is seemingly the same. We do not really know where the finish line is. We have some ideas, like being able to go out without being socially distant. It might also be that we do not have to wear masks everywhere.

Will we really get there?

Will we really know when we are past this quarantine? There is a lot of conversation about the new normal. It should mean that we can visit loved ones in the nursing home without restrictions. It should also mean we recognize how we got here, to the place of isolating people from loved ones in order to maintain safety. Or making formal caregivers work harder and longer just to maintain a safe environment.

In thinking about the journey during the COVID-19 quarantine, we really do need to think about how we get to the other side. We must also think about what led to this quarantine. We need to know what we should do differently if we are ever in this situation again.

What do we do when we get there?

We need to value older adults and their caregivers. We must consider our response to the coronavirus and put in place the necessary structures to prevent the social isolation that resulted. There must be better measures than that. More importantly, we should provide better support for residents in long term care, as well as their formal caregivers. It means valuing caregiving enough to honor and preserve it, and not sacrifice those who provide it for the sake of safety.

We need to not only enjoy getting past this time, but especially focus on where we go from here.

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

Have you ever been misunderstood? You are trying to make your wishes known, but, for some reason, what you are trying to communicate is not understood. If the same miscommunications happened over and over, what would you do? You would probably get frustrated to the point of doing anything to get your point across. It can be hard to understand why there is a misunderstanding.

Seek to Understand

It is stressful for people working in long term care, in the middle of  the quarantine still in effect, with the loosening of restrictions. The stress felt by persons with dementia still looms larger. Residents probably have the same feelings of frustration and sadness, but to a greater extent. They are missing out on their regular routine, which, at this point, has changed. They might be able to visit with loved ones except for in short spurts outside and with masks. It may be more confusing than ever. A person with dementia may be confused about what is happening, while seeking comfort, understanding, and safety.

Being Supportive

What can be done to continue to support those with cognitive challenges, while maintaining sanity? Part of it is showing the person that you care. Workers who are provide the crucial care in this challenging time do care. All of the sacrifices to support persons with dementia can take a toll. The sacrifices and support make all the difference for those who are in their world, but cannot come to ours. We have to come meet them where they are. As  C.S. Lewis noted, a friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words. This is what long term care workers do every day, with or without a quarantine.

Avoiding Misunderstandings

Persons with dementia take their cues from their caregivers. If you can be calm, and it is not always easy, they will follow. If you are stressed, and that is understandable, they will likely be stressed. It is hard to live in the moment, but that may be the best option. Focus on the person and the feelings. Sometimes, we just need a witness to our frustration. We need to feel that someone is there for us.

May we strive to be fully present for those who cannot be easily understood, and give them the kind of support and understanding they need. May we always find ways to help promote understanding and support. And may we be grateful and supportive of those who consistently support our loved ones with dementia, at their own expense.

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