Providing care for a loved one with Alzheimer’s disease immediately inducts you into an unfortunate club of people whose relatives have this condition. No one wants to be a member, but given that around 5.5 million people in the United States have Alzheimer’s, many, many people are.
Although there’s no roadmap for dealing with life when someone you love has Alzheimer’s, if you’re in this position, it can help to hear from other people in the same unbelievably tough spot. Here, we spoke with some Alzheimer’s caregivers to find out a few things they wish they’d known at the start of their journeys.
1. “You have to learn how to grieve losing someone while they’re still alive.”
Amy L. became one of her father, Art’s, caregivers after he was diagnosed with Alzheimer’s disease in 2012. Amy says she was ill-prepared for how much grief she experienced before her father passed away in 2015.
“You have to learn how to grieve losing someone while they’re still alive,” she tells SELF. “You always think about grief as something that happens once someone passes away, but this illness really changes who they are.”
Alzheimer’s disease is a progressive brain disorder, meaning someone has more (and more intense) symptoms as time passes. These symptoms include cognitive issues like confusion, difficulty doing normally minor tasks such as getting dressed, and memory loss that eventually becomes so severe your loved one may not recognize you, according to the National Institute on Aging (NIA). It would be crushing if these changes happened all at once, but the progression of Alzheimer’s stages is its own kind of awful.
“Each little change was devastating,” Amy says, describing difficult times like realizing that Art could no longer go to the bathroom alone, or his moments of clarity that something was wrong with his health. “You have to learn to cope with the new reality, and then another change comes,” Amy says. “When he passed, it was a whole different onslaught of grief.”
Amy wishes she had seen a grief counselor or therapist while she was going through this. “It would have been so helpful,” she says.
2. “I wish I had known from the beginning to just listen to and trust myself, because I am the only one who knows what it feels like to be in my own circumstance.”
Emmy G.’s mom, Linda, was diagnosed with Alzheimer’s disease five years ago and is now in a later stage of the disease. Emmy tells SELF that helping to care for her mother is “difficult and emotionally depleting.”
It’s not only that Emmy has had to adjust to her mom’s condition—it’s also changed how Emmy relates to other people besides her mom. “Being in my early 20s, it is hard to explain what I am feeling to those my own age, and for a while I felt distant from friends,” Emmy says. “In addition, older friends/family who have gone through similar experiences feel the need to judge or criticize how I treat my mom and offer up ‘suggestions’ for [how] I should act.”
However, as Emmy gets more confident in her ability to care for her mom, people have commented less, and it affects her less when they do say something. “I wish I had known from the beginning to just listen to and trust myself, because I am the only one who knows what it feels like to be in my own circumstance,” she says.
3. “Alzheimer's affects everyone differently.”
There’s a long list of potential symptoms people may exhibit as their Alzheimer’s evolves, but not everyone will experience each symptom. For instance, some people with Alzheimer’s disease undergo personality changes, but Cecelia N. tells SELF that her grandmother didn’t experience this before passing away in 2012. “However, some families aren't that lucky,” she says. “Alzheimer's affects everyone differently.”
4. “The most comforting feeling I found was talking to someone who could relate.”
Having a loved one with Alzheimer’s disease can be incredibly isolating, Amy says. After her father was diagnosed, she read everything she could online about the disease and tried to find others to talk to who had been through the same thing. “The most comforting feeling I found was talking to someone who could relate,” she says. “It made me feel not so alone.”
Amy says she even got in touch with two famous people who had been through a similar experience. “I reached out not because they were famous but because they had been where I was,” she says. “They both wrote me back, and it meant so much.”
Emmy also emphasizes the importance of this kind of support. She found help and resources through the Alzheimer's Foundation of America, which has a national hotline staffed by licensed social workers from 9 A.M. to 9 P.M. Eastern Monday through Friday. You can reach the hotline at 866-232-8484.
The extent of resources out there for those dealing with Alzheimer’s and their loved ones might surprise you. Peggy M.’s husband, Tom, was diagnosed with early-onset Alzheimer’s in 2012 at the age of 57. (Early-onset Alzheimer’s means a person shows symptoms before they’re 65.)
“Our local Alzheimer’s Association offers some wonderful programs,” Peggy tells SELF. “We attend support groups and a memory café weekly.” (A memory café is a supportive gathering for those with memory loss and their loved ones to socialize and connect with each other.) Tom even sings in something known as the Forgetful Friends Chorus which is a choir based in Manassas, Virginia, made up of people living with early-stage Alzheimer’s. “We have made lifelong friends through these activities,” Peggy says. “Connecting with others who know what [we’re] going through and who can offer support and suggestions for dealing with the disease’s various challenges has been very helpful.”
5. “I should have said, ‘Can you come over on a Wednesday without me having to ask so I can go to the gym for an hour or get my nails done?’”
Amy says people regularly told her she should keep living her life while Art was sick, but she couldn’t bear to take much time for herself due to guilt. This contributed to her becoming completely overwhelmed, she says. Looking back, she wishes she would have told those who offered to help that she basically needed to be forced into self-care.
“I should have said, ‘Can you come over on a Wednesday without me having to ask so I can go to the gym for an hour or get my nails done?’ If someone came over and just said, ‘Go!’ I would have,” she says.
On a related note, Cecelia says her family had “no idea of the community resources that were available,” including respite care, which provides short-term and time-limited breaks for families and unpaid caregivers. “These programs help out families so much,” she says. “It would have been great to know of those.”
6. “Alzheimer’s hits you hard financially.”
“Financially, we had no idea,” Cecelia says. “My grandmother passed away in 2012, and just last year we paid the nursing home off. It takes a financial toll on the whole family.”
Kim B., whose husband, Jeff, was diagnosed with early-onset Alzheimer’s disease in 2016 at the age of 51, agrees. “Alzheimer’s hits you hard financially,” she tells SELF. “Jeff was the main breadwinner in our family. He qualified for social security disability, but it pays only a small fraction of what he was earning.” The couple currently has three kids in college, and Jeff’s parents live with them. “I am currently working two full-time jobs in addition to being a caregiver, wife, and mom,” Kim says. “My days start at 6:30 A.M. and do not end until 10 P.M. It gets pretty exhausting.”
7. “There will be good days and bad.”
“Initially, it scared me when Jeff was having an ‘off’ day—short-tempered and reserved—but I have learned those days come and go,” Kim says. “I, too, have good days and bad days, and that is OK! On my bad days, I acknowledge it and tell myself tomorrow will be better,” Kim says. “There will be good days and bad. I always tell my kids, it is OK to have a bad day, but then you have to get up and keep going.”
Kim has also learned what contributes to Jeff’s bad days, like traveling, which can be helpful when it comes to reducing the challenges Alzheimer’s can cause.
8. “Appreciate your loved one every single day. Be grateful for how much they can do in that day, in that moment.”
Emmy recommends trying to find joy in your current relationship with your loved one, as impossible as that may feel sometimes. “[I] wasted an entire year crying about the future rather than appreciating what my mom was still capable of,” Emmy says.
Now Emmy tries to savor the experiences she and her mom can still share. She does this by taking Linda out to a meal for just the two of them, traveling to nearby towns where Linda used to spend a lot of time, and dancing together to music that Linda’s loved for years. “Appreciate your loved one every single day,” Emmy says. “Be grateful for how much they can do in that day, in that moment.”