Part 1: Shirley
Sole caregiver for her husband
– Photo courtesy of Shirley
Shirley, 81, solely cares for her 82-year-old husband, who is living with dementia, in their condo near Newton Center. Her husband was diagnosed with Alzheimer’s disease in 2016. As the disease developed, Shirley's husband began to have difficulty finding words. With a diminished ability to express himself, he always needs Shirley, who understands his needs without words.
For privacy purposes, Shirley preferred her last name and her husband’s name not be used.
SCRIPT:
My name is Shirley. My husband has Alzheimer's. I am his sole caretaker. So it is a challenge to care for someone all the time.
He still recognizes everyone. It’s his wording, of course, he can't put words together. And he gets confused easily. But he is still alert and well functioning. He likes to be out as much as possible. He's very social. He likes to talk to people. He likes to be with people. He loves to dance. And so I want him to enjoy the things he can.
The couple first met at a house party when Shirley was 25. He asked her out soon after and took her to a fancy French restaurant on Newbury Street. Five weeks later, he proposed. Shirley was attracted to his sense of adventure, spontaneity, and sociability. This 55-year-long married couple have had countless adventures, whether it's frequent weekend trips to Vermont, or a five-week journey through Asia and Oceania.
The diagnosis came a year after Shirley retired. Shirley’s husband has difficulty doing simple things, such as getting something from their fridge. He may ask if they have a plan to go out, 20 minutes after they come back home. He has no trouble recognizing his wife or their two children, who call the couple every day, though they can’t visit often.
From cooking to gardening, and even painting, Shirley's husband enjoys many hobbies. Before the pandemic, his week was filled with activities, many of which were designed for seniors or people with dementia. They were regular participants at a memory café hosted by Temple Emanuel.
Recent paintings by Shirley's husband
The couple often went out to eat with friends. They also hired a professional caregiver, who would take Shirley’s husband out to his friend’s house or a store. When he was out or fully engaged with activities, Shirley was able to do her own thing or just have time for herself. One of their friends often visited their home and stayed with him for couple of hours, while Shirley went out by herself. It was such an important time for her.
SCRIPT:
I would set up a week full of activities for him. I tried to keep everyday pretty busy. So I was driving a lot and taking him a lot and he loved it. And I could bring my book and sit back, relax.
And you know, we could meet friends for lunch, or we like to go out for breakfast. We would go for breakfast a lot. And when COVID came, all that, all that stopped.
The Memory Café, the temple has been absolutely wonderful, because he met a number of people that he could relate to.
He met one particular man, we met them as a couple. They just hit it off right away. And we started to see them socially outside of the group, and the men really bonded. And it meant a lot to him to have someone else to talk to who understood. And unfortunately he passed away this summer. It was a big loss for him.
Because I have no time for myself, or no time to pursue any of the interests that I might like to do."
The pandemic changed everything. All programs they had attended at least temporarily shut down. They stopped going out for breakfast or relying on the hired helper. They have lost several friends since the pandemic started, one of whom was very close to Shirley’s husband.
While the couple can still attend activities via Zoom, their life has became increasingly monotonous. Shirley’s husband desperately misses going out with friends, though he understands why he can’t. He occasionally participates in Zoom sessions, but they are not as engaging. With no more personal time to unwind, Shirley feels tremendous stress from the increased responsibility her husband now requires.
SCRIPT:
The COVID has been extremely difficult. Because anything that he went to, anything, just has been canceled. And he'll do some things on Zoom. But after a while, he doesn’t like Zoom.
Before, he would be tired or take a nap. When he came home, he might not mind doing something else. But he doesn't have that distraction anymore. So it's a very long day, which is what all my friends complain of. It's a very, long day.
And he relies on me for his entertainment. It's difficult for me because I'm always trying to find something to occupy him. So it's difficult for me to do anything. On the other hand, is it's difficult for him. So it's twofold.
Inside of myself, I try not to be, but I'm angry. Because I have no time for myself, or no time to pursue any of the interests that I might like to do. I do have to put him first, and not having any time to yourself is difficult. The time that I do get for myself, I run around to do the paperwork or pay the bills or do something, because that's a slim little slot of time. So I feel very confined.
It’s difficult.
Shirley gets tired of her repetitive life in the pandemic and wishes she could stay in bed sometimes. But she just pushes herself because she says she has “no choice.” Despite everything, she appreciates the time she does have with her husband and tries to make the best of it.
SCRIPT:
There are some mornings I don't want to get out of bed, because I know it's going to be a repetition of the day before or maybe a little different. But I have no choice. My husband has to be taken care of. We have a nice breakfast together. We do that every day. And then I try to plan out every day so that we can go out for a little bit. Because even though you might be sad or depressed or whatever, you still have someone to care for. And I don't want him to be depressed. Just have to get up and push and keep going.
Despite all the disability, etc. we still have some fun times. We still laugh a lot together. And I do have someone that I'm with that I can converse with. Although it's a little harder, but definitely converse, and we can laugh and joke. We just try to make the best of it.
I don't want to know too much about what's ahead of me. Because I want to enjoy the stability that I do have. I'm just trying to live with the good parts of it. And having him being able to enjoy what we can do. And what he can do. While we can.
What’s really challenging about the pandemic
Caring for their loved ones with dementia, 24/7, in-home caregivers can feel stressed and isolated, and with limited support these feelings only intensify. Brooke Patterson, clinical manager for dementia care coordination at Alzheimer's Association Massachusetts/New Hampshire Chapter, acknowledges the problem, saying, “A lot of people lost their services” due to the pandemic.
Patterson, who performs consultations for people affected by dementia and their family members, says that many paid caregivers stopped services that involve coming into families’ homes, or people are hesitant to bring in other people. The loss of adult day care was also “huge,” she says. “It's a huge chunk of time that caregivers really rely on, need to be able to take care of themselves, and do what they need to do.”
Additionally, Patterson says some caregivers have had to stay up all night to care for their loved one who is not tired enough and has trouble falling asleep. Even when they get to go out, it’s challenging to make some seniors understand why they have to wear a mask. Neighbors and other family members are afraid to visit them, for fear of transmitting the virus.
Patterson suggests structuring a day for seniors and making sure to do some things each day. “Now, the help is able to come in a little bit more, and some of the adult day health are starting to reopen. Try to get back into the routines and rhythms, and think about how you do it safely,” she advises.
There’s also a psychological hurdle for caregivers to overcome when asking for help. “Many of them feel guilty, thinking they themselves need help, and that they're not supposed to do that,” says Pamela Kelly, director for Medford Council on Aging. Kelly encourages caregivers to reach out to local senior centers or elder service providers for additional support. “Get that support to get even an hour a day to yourself, because you will need that.”
Part 2: Lisa Michell
Primary caregiver for her mother Juanita
– Photo courtesy of Lisa Michell
Lisa Michell is the primary caregiver for her 81-year-old mother, Juanita Peterson, who is affected by dementia. They live in a Roxbury house with Lisa’s husband, two teenage sons, a dog, and a cat.
– Photo courtesy of Lisa Michell
Juanita used to live with her husband in her house in Virginia until a few years ago. When she lost her husband in 2017, it became apparent that she needs to live with someone else. Her memory issues were progressing, and she eventually became incapable of making sound financial decisions. Juanita moved to Boston in September 2018.
Soon after her move, Juanita was diagnosed with dementia. As part of her new routine, she got involved in programs at Boston Centers for Youth and Families (BCYF) Grove Hall Senior Center and Kroc Corps Community Center. Juanita attended a variety of programs during the day, with assistance from a professional companion for seniors.
This stopped when the pandemic hit. Now, Juanita’s routine consists of at least two virtual programs a day. Aside from activities for seniors and two memory cafés around Boston, Juanita is involved in a choir and art group based in Connecticut.
– Video courtesy of Lisa Michell
Juanita has no trouble sitting in front of the computer. As long as she can see other people’s faces, she’s able to stay engaged enough. If she’s bored, she walks off, but that hasn’t happened too often.
She made some friends while attending the programs.
However, Lisa sometimes feels burdened because she needs to ensure her mother attends the programs on time. Lisa is a registered nurse and covers the night shift from 7 p.m. to 7 a.m. Since the pandemic began, Lisa has had some sleepless days.
What’s fortunate is that Lisa has many family members who can pitch in. Her husband is extremely helpful and uses humor to relieve her stress. Her high-school-aged sons, who study from home, often help their mother out as well. Even one hour of help makes a huge difference, she says.
– Photo courtesy of Lisa Michell
The best medicine is the family’s dog Coco, who instantly became Juanita’s best friend once she moved in. Juanita takes Coco out to the backyard many times a day, and it is an important task for Juanita because it makes her feel more independent.
Having five people and two animals in the same house sometimes feels cramped, especially now that everyone has to stay home all the time because of the pandemic. But Lisa says they are lucky to have each other to rely on, access to an outdoor space, to the internet, and especially for the bond between her mother and Coco.
Senior communities going virtual
– non-negligible
problems and a silver lining
More and more adult health programs and memory cafés have become available online. Although seniors have to overcome a number of obstacles in order to attend them, there is a silver lining.
Before the pandemic, most seniors had never accessed Zoom. Many don’t even own a computer or smartphone. “For one reason or another, they don't have the resources, or they are not able to learn the technology, or their community just doesn't have sufficient broadband,” says Beth Soltzberg, JF&CS Memory Café coordinator and founder of the Percolator Memory Café Network, a statewide network which aims to spread memory cafés throughout Massachusetts.
Some organizations are able to creatively tackle these technology-related issues. Grove Hall Senior Center has made 14 tablets available to seniors and offered education on how to use them. Some memory cafés including the one at JF&CS are supported by a specialized tech team or volunteers who help seniors learn the technology. The pandemic has forced senior citizens to be more tech-savvy. “It's pushed us to grow in that way and see what's possible,” says Soltzberg.
An online gathering is more accessible for those who are physically debilitated or have trouble getting ready and leaving home. Soltzberg surprisingly saw memory café participants reunited with their friends and family who live in different locations through the now-digital café. Soltzberg says, “It's been really fascinating to see that some things actually work better.” She plans to continue to offer the virtual option even after the pandemic is over.
Still, Soltzberg says she can’t ignore some of the issues the virtual interface creates. Some seniors find it disengaging or confusing. Soltzberg also understands that some people are not willing to sit in front of the computer or find it agitating. “The people who I'm most concerned about are the people who really can't cross that digital divide.”