Alzheimer’s Caregivers:
Put on Your Oxygen Mask First
An Integrated Media Story exploring what caregivers are going through and the different ways people can help
“He did it on purpose. I know he wants me to die, and he can be happy.” My grandma sent several 60 seconds voice messages in a row a few days ago, crying. When I heard that first sentence, I knew that my grandpa's condition might have worsened again.
Four years ago, my grandpa was diagnosed with Alzheimer's. He started forgetting how to walk home from the grocery store and started berating my grandma for not being able to find the TV remote. Only last year, my grandparents celebrated their 50th wedding anniversary. Now they've reached the point where my grandma is crying for a divorce.
My grandpa has become more and more irritable, often arguing with my grandmother over trivial matters. Every time I saw my grandma, it was when she was in the hospital on an IV drip and having a high blood pressure attack. But everyone was telling her to bear with my grandpa a little longer, to understand a patient.
I feel so sad. As my grandpa's only personal caregiver, everyone wanted her to understand my grandpa, but who is going to understand her? My grandma was supposed to be a lover of life, she loved to sing, dance, and travel, and would take her new phone and ask me how to edit videos and post them to TikTok. But now she's stuck at home, her life revolves around my grandpa, and she's hospitalized from time to time because of countless arguments.
Alzheimer’s, defined by the Alzheimer Society, is “a chronic neurodegenerative disease that destroys brain cells, causing thinking ability and memory to decline over time. Alzheimer's disease is not a normal part of aging, and is irreversible.”
According to Statistics Canada, as of January 2024, approximately 750,000 Canadians are living with Alzheimer's disease or other forms of dementia; Alzheimer's alone has been identified as the ninth cause of death in Canada.
Despite the prevalence of the disease, almost all the seven people interviewed at random mentioned “memory loss” and “being like a child,” and only one mentioned “prone to losing life skills due to memory loss.”
“It tends to be portrayed as simply being forgetful. When in fact, there are personalities and physical changes that take place.” Grant Campbell said. He is a professor teaching Library and Information Science at Western University and also a caregiver.
Campbell mentioned a video of a former ballerina with Alzheimer’s performs “Swan Lake” dance on her wheelchair.
“It’s incredibly moving. You can’t watch it without crying.” Campbell said. But when he watched it, the first thing that came to his mind was how much work was it to get her dressed, get her washed, and to be there in front of the audience.
“Afterward, she was exhausted, who took her back up to her room, who put her to bed, and who fed her? People tell a lot of feel-good stories about people with Alzheimer’s have moments whey they come to life, but who takes care of them in the meantime? These tend not to be shown,” he said.
“I don’t think media fully gives credit to how much work is involved in caring for them.” — Grant Campbell
Caregivers’ Stories
An anonymous interviewer living in Mississauga is witnessing the impact of Alzheimer's on his family.
“My grandmother is in very bad condition. She can't be left alone at all. My grandfather lives with her. When my grandmother goes to bed at night, she will shake my grandfather awake, so he can't rest at night. He can only sleep during the day when my parents bring my grandmother over to our house.”
“And my grandmother cries a lot; she often cries all of a sudden, but usually nothing happens.”
“My grandfather said he was tortured by my grandmother to live 10 years less.”
Campbell also shared one memory as a caregiver. Both his parents were diagnosed with Alzheimer and passed away years ago.
The Caregivers Need Help
“The family is an absolutely crucial part of caring for people, because there are not enough facilities for all the people who are going to need help in the future.” Campbell said. While caregivers are taking the responsibility for family members, they are subjected to simultaneous internal and external torture.
Campbell said he once interviewed a caregiver whose husband had dementia. He told Campbell, “I feel terrible. I felt like I didn't love him enough because I put him in a long-term care.” But before that, his husband had gotten to the point where he was going to the bathroom on the living room carpet.
Family caregivers often wonder, “Did I do enough? Did I move them too soon?” They ask themselves day after day. Sometimes they are judged by outsiders who think they are sending patients to nursing homes because they don't want to take on the responsibility of caring for their family members. This “enormous difficulty,” said by Campbell, is often overlooked.
In the media, caregivers are portrayed as saints, Campbell said. “‘She’s so good, she’s so patient, she’s so wonderful.’ They don’t see what’s going on inside our heads. They don’t see us saying to ourselves, I am tired. I am frustrated. I am exhausted. I just want this was over,” Campbell said.
Thus, We need more conversation about what people are going through and the different ways that people can help.
What Can You Do As a Family Caregiver?
Take care of yourself
“Like what they tell you on an airline, which is put your own mask on before you help another person,” Campbell said, “this is a marathon. This is not a sprint.”
“With caregiving with dementia, you are looking possibly at 10 years of increasing work and increasing stress, and you really need to look after yourself,” Campbell said.
If you’ve got siblings, try to divide up the work according to what various people can do. If they all live far away, think creatively how they can help. Alzheimer’s puts a lot of stress on the family, and you have to be patient with each other.
If you are the only child, try to find people who can support you. Get advice where you can. Talk to the Alzheimer’s Associations, talk to relatives that live far away.
When it’s the disease talking, you have to not take it personally
Campbell’s sister found a letter their father wrote to all of them. “I’ve realized that there are times when because of age or because of disease, we say things we don’t mean. If that should ever happen to us, I just want to know that we love you to pieces and that we think the world of you all. Try to remember that if ever a time comes when we’re behaving in a way we wouldn’t want to behave.”
It’s really hard with someone you’re close to. “There’s always the part of it saying, why are you talking to me this way? I’ve known you since I was a little kid, how could you be doing this to me?” Campbell said.
But there are times when that behavior is expressing something that you need to know. Why he’s frustrated? Why he’s angry? Is there something in his physical condition? “There could be something you need to know, and you have to be able to listen on the hand, but not take it personally on the other,” Campbell said. Try to keep a memory when they said good things.
Seek external resources from professional services
On the official website of the Alzheimer Society, you will find many suggestions for caregivers. For example, “First steps for families after diagnosis,” “understanding how your relationships may change,” “dealing with ambiguous loss and grief,” etc.
You are not alone in this journey. Sometimes somebody on the outside has better perspective and can say “you’ve done enough. You are going to kill yourself if you do more. You’ve got to find some other solutions,” Campbell said.
“We need more facilities for assisted care. We need better standards of assisted care. We need more qualified healthcare workers, we need more recognition of what families are going through. We need a better understanding of the emotional things that they go through. There’s nothing shameful about having dementia, it’s something that happens.”
— Grant Campbell
Sources
Cover picture: https://www.adsoftheworld.com/campaigns/loved-ones-forget-themselves-too-a18066f4-c491-44d8-8f92-45d89349909c
Special thanks to Josiane N’tchoreret-Mbiamany for editing the cover.