Many times, people with Alzheimer’s disease are forgotten. Sometimes, it occurs long before the official diagnosis has been received. Friends or family members start noticing changes in their loved one and they may not know how to address these changes. Often times, it is easier to forget about the person and simply move on without trying to figure out what is really going on. Other times, once the official diagnosis is obtained, it is just too much to bare. Friends or family members, even neighbors, are not sure how to react to the diagnosis or how to interact with the Alzheimer’s patient. Again, it is easier to forget about the person and move on. An Alzheimer’s diagnosis is only the beginning of a long, rocky road, filled with ups and downs, peaks and valleys, and unfamiliar terrain. It is difficult to travel along this road and to see how the journey affects the person you love. Rather than deal with it all, many people find it easier to forget. But, my mom is still Jerie, the woman you all know and love, and she should not be forgotten, discarded, or written off because of some fucking disease.
Unfortunately, I have experienced this firsthand through my mom’s struggle with Alzheimer’s. Not so much with close family members, as my family has been very supportive and helpful, but I have noticed it with distant family members. Family members who may not have seen my mom in years, but are aware that she has Alzheimer’s, do not know how to approach her. Many times, they expect my mom to still know them and to know how they are related to the family. I’m sorry, but my mom has no fucking clue who you are. She even sometimes forgets people that she sees frequently, so how is she supposed to remember the distant family members that she hasn’t seen in five years? Once people introduce themselves to my mom and she clearly does not remember them, they begin shouting their names at her as if that’s going to jog her memory. She has Alzheimer’s. She’s not deaf. Shouting at her is not going to do anything except make her feel stupid and anxious because she does not remember you. I often tell people to tell my mom their full name and explain how they are related to the family. You should just assume that she does not remember you and explain who you are right off the bat. This makes for an easier and less stressful introduction, as well as an easy transition into a conversation with her. That’s right, a conversation. Don’t just simply introduce yourself and then turn your back on her. Or, worse, talk about her as if she isn’t there. Would you do that to someone who has cancer? No, because that would make you an asshole. Same goes with Alzheimer’s. Many people just assume that my mom has nothing to contribute to a conversation and they just ignore her. Sure, that’s much easier than struggling through a conversation with her, but I can’t tell you how happy it would make my mom for you to just talk to her. I know for a fact that she often feels ignored and excluded during social gatherings. And, I have to admit that she often is ignored and excluded. No one knows how to approach her or what to say to her. They are often clearly uncomfortable with the situation and would rather stay away. But remember, she’s still Jerie. She can still talk your ear off about god knows what and she’s guaranteed to make you smile if you give her a chance. Luckily, this problem only occurs once in a while, usually at weddings and funerals. Most people could spare a few minutes of their time to talk to my mom, especially since they won’t see her again until the next wedding or funeral. A few minutes of their time would mean more to my mom than they could ever know.
My mom’s friends and neighbors have much more obviously forgotten about her. I’m not sure when exactly it occurred, before or after her diagnosis, but they dropped her like a hot potato. People stopped calling or stopping by. They stopped inviting her out to lunch or to go shopping. Eventually, her friends became non-existent. Maybe it’s because she was no longer allowed or able to drive once she was diagnosed with Alzheimer’s. Maybe it’s because they noticed changes in her behavior that made them uncomfortable. Or, maybe they just simply did not know how to deal with her disease and its inevitable devastation. Alzheimer’s is a very difficult disease to deal with, understandably so. But, would you drop someone as a friend if you found out he/she had cancer? Again, no, because that would make you an asshole. I’m sure you would offer to help the cancer patient and his/her family in any way that you could. I know that’s exactly what people did when my mom had breast cancer. Yup, that’s right, she had cancer, too. Double whammy. But, the way people treated her then and the way people treat her now is vastly different. And, I know why. I hate to say it this way, but cancer is a “sexy” disease. The media has made it “sexy” and it has become trendy to raise awareness or take action for cancer. Alzheimer’s is not a “sexy” disease. There is absolutely no way to make it a “sexy” disease. Most people think that only old people get Alzheimer’s and what’s sexy about old people? But, I don’t want to get started on all of that. That’s another post for another day. Since Alzheimer’s is not trendy or “sexy”, most people don’t know anything about it, which is probably why my mom’s friends and neighbors have forgotten all about her. No one offers to help in any way at all. No one cooks meals and drops them off to my parents’ house like they did when she had cancer. No one calls her or my dad to see how they’re doing. No one stops by to visit my mom, even though some of her neighbors are home all day. No one bothers to wave to the crazy old lady who is staring aimlessly out of the front door. I know that my mom would love nothing more than for an old friend or neighbor to stop by to see her. She would love for someone to make her feel wanted or for someone to make it a point to catch up with her. Who cares if she doesn’t make any sense when she’s talking to you? Or, if she can’t tell you what she’s been up to or what she did last weekend? Just let her babble on and on anyway. It would make her so happy to just feel acknowledged. To make her feel like she is still Jerie.
I believe that if people knew more about Alzheimer’s, then they would be more likely to keep in touch with a family member, friend, or neighbor who has the disease. They wouldn’t be so scared or turned off by it. They would want to help out as much as they want to help their friend who’s been battling cancer for years. They would understand that an Alzheimer’s patient is still a person. A person with feelings, likes and dislikes, opinions, beliefs, and stories to tell. My mom may have Alzheimer’s disease. She may continue to decline at a painfully slow rate over the next ten years or more. She may eventually forget about all of the people who have already forgotten about her and the ones who never will. She may not ever be the fully functioning woman that she once was, but she is still Jerie. She is still a wife, mother, daughter, sister, aunt, and friend. She still cares more about everyone else than she does herself. She still only sees the good in others and has a kind, generous heart. She is still an animal lover. She still loves music and dancing and being around people she loves. She still loves her man Elvis. She still likes to talk about American history, even if she gets most of the facts wrong. She still loves to get her hair and nails done with her daughters. She would still rather spend time with her husband than anyone else. She is still a better person than most people can ever hope to be. She deserves to be acknowledged and included. She deserves to be respected and spoken to. She deserves to feel useful and to have a purpose. She deserves to be given a chance. And, she deserves to be remembered and loved. Because, at the end of the day, Alzheimer’s and all, she is still Jerie.