The Alzheimer’s community has experienced enormous hardship and heartache since the COVID-19 pandemic started in March. Dementia caregivers are dealing with ongoing stress and people with Alzheimer’s report more rapid cognitive decline. Nursing home residents have been terribly affected by COVID-19 with rising cases and deaths, and restrictions on visitors meaning long separations from family. 

Throughout the last eight months, UsAgainstAlzheimer’s A-LIST has surveyed caregivers and people living with dementia on the impact of the pandemic, and learned about their stress, their isolation and their fears. But the surveys also have shown their insights and introspections.

In a recent survey, we asked A-LIST members, “What is one thing you have learned about yourself since the coronavirus restrictions went into place?” The respondents offered personal reflections on relationships, resilience, isolation and religious faith that may comfort or inspire you. Here, in their own words, is a sampling what they’ve learned about themselves during the COVID-19 pandemic.

Finding Strength, Patience and Satisfaction

Since my husband’s Alzheimer’s keeps progressing at a seemingly faster pace, [I’ve learned] how I can keep dealing with it and find work arounds/lowering my expectations. My friend says I’m a rock.

I’ve been able to create safe ways to keep my husband engaged – golf cart rides, picnics in the park or by the ocean, and entertaining small groups of family, friends, and neighbors on our deck. I’ve always told my children and my grandchildren that intelligent people don’t get bored, and I’ve found a way to live that!

That I have to totally depend/trust the caregivers at my dad’s memory care facility without me visiting every couple of days.

 I value the community at my mother's residence more than I realized, now that I'm mostly excluded.

I think I have been a better husband by looking at my wife's needs and well-being above my own.

I can take care of my husband 24/7 with no breaks adequately and with a relatively calm outlook.

My memory seems better when I am interacting with more people.

That I can be more tired than I ever thought possible and still be a caretaker.

Facing Difficult Truths

How stressful all this is. I’m not a people person but my future looks really bleak. This has made me see my future as a caregiver.

How much I need my family and friends and how much I miss hugs.

Whatever my husband, who is living with young onset dementia, needs, I have to either do myself or make it happen myself. No outside agencies or assistance has been offered or extended to us.

No matter how hard I try to be patient, it doesn't work.

I need more help caregiving than I thought I did. I was relying on friends and neighbors, who were wonderful, but did not realize to what extent I depended upon others to keep us sane and whole.

Even if you are a strong person, there is no way you will not be negatively affected by caring for a person with Alzheimer’s.

Importance of Religious Faith

That I have more confidence to maintain a positive attitude during difficulties in life by accepting them and placing trust in God, and then taking responsibility to do whatever I can do to deal with the difficulty.  Whatever the outcome, this avoids the need for regret.

I learned that I must be more diligent in "practicing what I preach" when talking to care partners in our dementia ministry: "Balance is important in all that we do. We must find time to replenish our bodies, our minds, and our spirits."

I am very dependent on my God and his laborers in the community.

Resilience Is Discovered – and Tested

I'm mentally stronger than I thought but feel I'm always on the verge of breaking. I haven't, so...

I learned that I have a hard time dealing with this amount of stress and fear.

I am stronger than I thought, family members do listen to me, I am adaptable to necessary change and I have common sense.

That I can cope with this pandemic because I have to.

Managing Isolation Is Doable but Complicated

I actually like to be alone and I have been able to give myself permission to not do everything - that my "good enough" is actually ok. It has surprised me. But I am also lonely, and I crave conversation with someone who is able to have a conversation. We are alone, the two of us, and my husband can't hold a conversation. The loneliness scares me sometimes. 

As long as I can connect online with others I can live without physical contact for quite a while.

I've lived alone or without a great deal of social life over most of my 82 years, so I've been able to deal with the isolation much better than my neighbors in my independent living community. But it's really starting to get to me, and I'm not looking forward to the next 6 months because I think it will be that long before we can rejoin the world. This is a lost year. I would have preferred death. Never thought I would say that...

Lessons on Coping

If I just go along with my husband’s harebrained schemes and stupid questions instead of telling him no, we are both more peaceful.

I need to take better care of myself so I can stay healthy and fulfill my role and responsibilities as a caregiver.

I need to keep changing my perspective in order to try to stay positive. Otherwise it’s a downward spiral. I’ve also learned to allow my feelings of fear, grief, sadness and overwhelm to be felt and pass through rather than forced down.

Reflections on a Post-Pandemic Life

I must learn that "unproductive time" still has value and merit, and not define myself by accomplishments.

I'm not too old to improve my piano playing – plus I still maintain a sense of humor.

That I need outside motivations to accomplish challenging tasks.

How much I miss the spontaneity of everyday life and continued hope for returning to our normal.

Virginia Biggar is Executive Director of Communities at UsAgainstAlzheimer’s.

Join the A-LIST: UsAgainstAlzheimer’s will continue to take the pulse of our community as the nation deals with the ongoing pandemic. To answer upcoming surveys on the impact of COVID-19 and other topics please sign up for the A-LIST by clicking here and adding your name and email address. You will receive an email each month with a short survey. Responses are anonymous. UsAgainstAlzheimer’s is committed to using results of our A-LIST surveys to demand changes that improve the lives of those living with dementia and family caregivers.