Daughter Opens Up About the Challenges with her Mother's Early Onset Alzheimer's

This is the story of Amanda Hayes, daughter and caregiver of her mother, Susie Young. Susie has suffered from Alzheimer’s disease since 2013 when signs began to show up. Amanda comments that it is very difficult taking care of someone going through this type of dementia. She highlights that there is a vital difference between Alzheimer’s disease and other chronic diseases such as cancer that are more life-threatening, and it is that with cancer, for instance, people have a potential chance of winning.

With Alzheimer’s there is a more dramatic outcome since people cannot do much apart from watching others decay due to the neurodegenerative disorder, a process that in most cases leads them to forget about their relatives and even stop recognizing themselves in front of a mirror.

Hayes has been by her mother’s side during the entire process and she is pretty direct when people ask her what it is like to take care of someone with Alzheimer’s disease. Hayes, who used to be a baker before deciding to turn into her mother’s full-time caregiver, said that the truth behind taking care of someone with Alzheimer’s disease is devastating and brutal.

First signs of the disease

Hayes decided to move from Colorado to Altus where her mother lives, along with her husband and her son once her mother began to display the first signs of early-onset Alzheimer’s disease. However, at first, doctors did not say it was Alzheimer’s disease directly. They called it depression instead.

When Susie first started to show signs of suffering from Alzheimer’s disease everyone believed it was because of stress. She was constantly under a lot of pressure since she worked as a treasurer for Altus Public Schools. Hayes says that she first realized something was odd with her mother when she visited them when her son was born: “There was no other thing I could do than taking care of her. She would have done the same if one us were in that situation.”

First, they decided to visit the family doctor and he immediately referred Susie to a specialist, said specialist was the one to diagnose Susie with Alzheimer’s disease. After testing her it was determined that she was suffering from posterior cortical atrophy which is more commonly named “Benson’s Syndrome.” This is considered a rare type of Alzheimer’s disease that affects only 1 out of  every 20 people with Alzheimer’s disease. Actually, only 13 cases have been diagnosed in the U.S.

Hayes compares her mother’s condition to the one suffered by her grandmother. She says that her mother is aware of things happening in her surroundings while her grandmother was not. “My mother is unable to read or get dressed but she remembers who comes to visit her and who does not,” says Hayes.

Can Alzheimer’s disease make someone feel lonely?

Alzheimer’s disease is a very isolating condition, nevertheless, and there are always more support groups for people who find it difficult going through the condition while going through constant episodes of severe depression. Hayes’ mother is an example, not only did she feel lonely but Hayes started to feel lonely herself.

Hayes says that her mother was resilient about the idea of joining a support group, which is the reason why she spent the first 4 years of the condition enclosed in her house. “My mother has been living with this condition since she was 54 and she will turn 58 this month,” says Hayes.

Finally, she decided to join a support group they found on Facebook called “Adult Children of Early-Onset Alzheimer’s Victims,” which is a group created with the purpose of having caregivers, most of them women, from all parts of the world communicating and sharing their experiences about the life they have while taking care of their loved ones.

Hayes said that they share stories with each other in a completely honest way and can open up properly with others that are going through the same situation. Hayes says she can say things that other people may think are awful without having to think twice about it because other people in the group will understand her feelings.

Although the odds of this happening are very limited, 2 of those 13 Benson’s syndrome cases in the U.S are in Jackson County as well. Thanks to this, Hayes was able to create a friendship with Fran Gabler, a woman whose husband named Denny passed away from the same condition her mother suffers from.

A united family is very important

Fortunately, Susie has not been alone because she has always counted on her family, especially her husband. Hayes spots her mother's husband as her true hero since he has stayed by her side since she was diagnosed with Alzheimer’s disease. Refusing to leave his wife alone, her husband preferred to abandon his business in order to help their daughter take care of Susie.

As it happens with any other condition, everything is way easier when someone can count on a tight-knit family serving as the first source of support. With the passage of time, Hayes has come to know her mother is not alone. Susie has support from her children, husband, friends and relatives.

Probably the most shocking statement said by Hayes is that she is already mourning the loss of her mother because although she is still alive, she is not the same person her daughter used to know. Hayes also recognizes that it can be difficult to know what to do when a relative is facing such a devastating condition as Alzheimer’s disease. However, she also defends that everything is better than not doing anything at all. Hayes recommends that people with a relative affected by Alzheimer’s disease should show up and visit them so they will not feel lonely.

Plans supporting people with Alzheimer’s disease

Hayes also highlights that since 2014 she has been part actively of the Alzheimer’s Walk. A yearly event that looks to support people suffering with the condition. The first year she participated, her team was able to raise $5,000 toward research for Alzheimer’s disease.

Hayes finds it surprising that in 2017 there is still a lot of information missing about the disease. And although research may not help people right now or serve as help for people who are starting to show the symptoms, it will help children who may suffer from it in the future.

Finally, Hayes points out that having a relative with Alzheimer’s disease changes the way people see their lives completely, making them entirely different and appreciating more the comfort of having relatives close.