COVID & Alzheimer’s: Horrible together
Iam one of many caregivers living with a spouse who has Alzheimer’s. It is not easy, and the coronavirus, in a number of ways, has been a special disaster for us. Over many years, for dementia caregivers in New York City, the greatest relief came with attending the wide range of Alzheimer’s programs available in the city. These included a rich array of programs sponsored by museums, artists, dancers, musicians and day programs at community centers. What all these programs provided was a safe and calming and enriching place for Alzheimer’s patients and their caregivers to relax, be with friends and return home having had an enjoyable experience.
COVID-19 ripped all of that away. No more programs, no more dancing, singing or eating with friends, and clearly no emotional support.
Prior to COVID, my wife spent several days a week at a day program full of music, exercise and just being with others. Weekly she attended rehearsals for a chorus for those with Alzheimer’s. She loves to sing and still knows the words to many songs.
On a monthly basis, we might attend a museum-based program, a concert, or go dancing at programs specifically sponsored for people living with Alzheimer’s and their caregivers.
Since the pandemic gripped the city, everything has become virtual. As hard as everyone is trying, it is just not the same and never will be. Online programs are by their very nature one dimensional. With a heavy heart, I see the change in my wife. While I have no illusion about where she is with the disease and what the future likely holds, I see the difference. She frequently reaches out to our computer in an effort to touch, to make contact with people she recognizes.
She is sleeping more, eating less, and is just not stimulated in the same way. It is agonizing to watch.
Another destructive disruption that COVID has brought is a fresh fear of having others in our homes, including friends and family members. The worry about infection has led many caregivers to eliminate their home health aides. That has created a great deal more stress in many homes.
Aides can make all the difference in our lives. They help us to feed and bathe our loved ones, help them to participate in the available online programs and generally help them to navigate the day. They also give us, the family caregivers, time to rest and revive. I made the difficult decision to keep our aide for just these reasons, and for my wife and me, it was the right decision, albeit a difficult one. I could not have survived without her.
Dr. Marc Rothman a Louisville-based physician, summed up the problem in the following terms: “When I think of COVID-19 and dementia, it’s the extra strain on caregivers that really concerns me.
The pandemic has either stripped them of the necessary tools they use every day — like small group activities or senior centers — or it’s made them fearful of the personal attendants they depend on for help. That’s a double whammy that can only lead to poor outcomes for the loved ones with dementia.”
Everyone knows by now that the situation has been especially dire for those caregivers with loved ones living in nursing homes or residential memory facilities where the ability to visit has been severely curtailed. No longer are they able to sit with loved ones to talk and to touch. COVID has reduced much of the process to FaceTime calls or window visits.
What is far less discussed but just as serious is that COVID has reduced the time people were allowed out of their rooms to communicate and interact with others. As a result, many residents end up in virtual isolation in their rooms without understanding what has happened. As caregivers, we suffer along with them and treasure the day we can again hold, touch and kiss our loved ones.
It was difficult enough to make the decision that we could no longer care for them and now we can’t even visit with them.
Under the very best of conditions, being an Alzheimer’s caregiver is a difficult and unforgiving task. In the era of COVID, it has grown even more complex and demanding. We do it because of our love for the other person is unwavering and we can’t turn away.
As millions of Americans get vaccinated, we long for the time when we can put aside our computer screens and again meet and touch and experience things in person again. That will make our difficult, wrenching work bearable again and bring fresh air into the lives of the people we love.