Caring for a loved one with Alzheimer's Disease leads you immediately to an unfortunate club of people whose relatives have this condition. Nobody wants to become a member, but given the fact that in the United States around 5.5 million people (19459006) have Alzheimer's, there are many, many people.
While there is no roadmap for dealing with life, if someone you love can do Alzheimer's, if you are in that position, it can be helpful to hear from other people at the same incredibly hard place , Here we talked to some Alzheimer caregivers to find out a few things they wanted at the beginning of their travels.
. 1 "You have to learn how to grieve to lose someone while they are still alive."
Amy L. became one of her fathers, Art's, caregivers, after he was diagnosed with Alzheimer's in 2012. Amy says she was ill prepared for how much grief she experienced before her father's death in 2015.
"You have to learn to lose someone who is still alive," she tells SELF. "They always think of grief as something that happens when someone dies, but this disease really changes who they are."
Alzheimer's disease is a progressive brain disorder which means that someone has more (and more intense)) symptoms over time. These symptoms include cognitive problems such as confusion, difficulty with typically minor tasks such as dressing and memory loss, which eventually becomes so severe that your loved one may not recognize you. , It would be devastating if these changes happened at once, but the progression of Alzheimer's stages is their own kind of awfulness.
"Every little change has been devastating," Amy describes difficult times like recognizing 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 deal with the new reality, and then there's another change," says Amy. "As he passed, it was a different attack of grief."
Amy wishes she had seen a grief companion 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 and trust myself because I'm the only one who knows what it feels like to be in my own situation."
Emmy G. & # 39; Mother Linda was diagnosed with Alzheimer's disease five years ago and is now in a later stage of the disease. Emmy tells SELF that taking care of her mother is "difficult and emotionally exhausted".
Not only did Emmy have to adapt to her mother's condition, it has also changed how Emmy acts next to her mother to other people. "Since I'm in my early 20's, it's hard to explain what I feel like my own age, and for a while I felt remote from friends," says Emmy. "In addition, older friends / family members who have had similar experiences have a need to judge or criticize how I deal with my mother and to make" suggestions "for [how] that I should act on."
However, as Emmy gets more People are less likely to comment on their ability to look after their mother, and they are less likely to be affected when they say something. "I wish I knew right from the start to just listen and trust myself because I'm the only one who knows what it feels like to be under my own circumstances," she says.
. 3 "Alzheimer's affects everyone differently."
There is a long list of potential symptoms that may occur in the development of Alzheimer's disease, but not everyone will experience any symptom. For example, some people with Alzheimer's suffer from personality changes, but Cecelia N. states that her grandmother did not experience this until her death in 2012. "Some families are not lucky," she says. "Alzheimer's affects everyone differently."
. 4 "The most pleasant feeling I found was talking to someone who could tell something."
A loved one with Alzheimer's disease can be incredibly insulating, says Amy. After her father was diagnosed, she read everything she could about the disease online and tried to find others to talk to, who had been through the same thing. "The most reassuring feeling I found was talking to someone who could relate," she says. "I did not feel so alone."
Amy says she even made contact with two famous people who had a similar experience. "I reached out, not because they were famous, but because they were where I was," she says. "They both wrote me back, and that meant so much."
Emmy also emphasizes the importance of this type of support. She found help and resources in the Alzheimer's Foundation of America which has a national hotline staffed by licensed 9th-century social workers. until 9 pm Eastern Monday to Friday. You can reach the hotline at the number 866-232-8484.
The amount of resources for Alzheimer's patients and their relatives might surprise you. Peggy M., Tom, was diagnosed with early-stage Alzheimer's disease in 2012 at the age of 57. Early Alzheimer's indicates that a person is showing symptoms before she is 65 years old.)
"Our local Alzheimer's Association offers some wonderful programs," Peggy tells SELF. "We visit weekly support groups and a memorial café." (A memorial café is a supportive gathering for people with memory loss and their relatives to socialize.) Tom even sings something known as the Forgetful Friends Chorus a choir based in Manassas, Virginia from people living with Alzheimer's in the early stages. "We found lifelong friends through these activities," says Peggy. "Connecting with others who know what went through [we’re] and can provide support and suggestions for dealing with the various challenges of the disease has been very helpful."
5. "I should have said, 'Can you come over on a Wednesday without having to ask me so I can train for an hour in the gym or do my nails? "
Amy says people told her to continue living her life while Art was sick, but she could not bear to spend much time on herself because of feelings of guilt. That helped make her completely overwhelmed, she says. In retrospect, she wishes she had told the helpers that she should basically be forced into self-help.
"I should have said, 'Can you come over on a Wednesday without me having to ask for it? I can go to the gym for an hour or have my nails done. "If someone came to me and only" Go! "Said I had that," she says.
Cecelia says her family has "no idea of available community resources", including short-term care which provides short-term and temporary breaks for families and unpaid caregivers. "These programs help families so much," she says. "It would have been great to know."
. 6 "Alzheimer hits you financially hard."
"Financially we had no idea," says Cecelia. "My grandmother passed away in 2012, and it was not until last year that we paid out the nursing home. It is a financial tribute to the whole family.
Kim B., whose husband Jeff was diagnosed early with Alzheimer's disease at the age of 51, agrees. "Alzheimer's hits you financially hard," she tells SELF. "Jeff was the main earner in our family. He has qualified for social security disability, but he pays only a fraction of what he earned. "The couple currently has three kids in college, and Jeff's parents live with them. "I currently work two full-time jobs and not just work as a carer, wife and mother," says Kim. "My days start at 6:30. and do not end until 10 pm. It gets pretty exhausting. "
. 7 "There will be good days and bad days."
"At first I was scared when Jeff had an" off "tag – entertaining and reserved – but I've learned these days are coming and going," says Kim. "I also have good days and bad days, and that's OK! On my bad days, I recognize it and tell myself tomorrow will be better, "says Kim. "There will be good days and bad days. I always tell my kids, it's okay 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, such as when traveling, which can be helpful in reducing the challenges can cause Alzheimer's .
. 8 "Love your sweetheart every day. Be grateful for how much they can do this day right now. "
Emmy recommends finding joy in your current relationship with your loved one, however impossible that may be. "[I] wasted a whole year crying for the future instead of appreciating what my mother was capable of," says Emmy.
Now, Emmy tries to enjoy the experiences that she and her mother can still share. She does this by taking Linda for a meal for two, traveling to nearby towns where Linda used to spend a lot of time, and dancing together to music that Linda loved for years. "Love your sweetheart every day," says Emmy. "Be grateful for how much you can do this day right now."