Alzheimer’s is a lot of different things to a lot of different people. No two cases are exactly the same.
Alzheimer’s is asking the same question three times within ten minutes. It’s telling someone the same information or story repeatedly. It’s forgetting someone’s name or the word for something. It’s forgetting to do something that you were supposed to do, or forgetting that you already did it and doing it again.
Alzheimer’s is forgetting how to fix your iced tea when you’ve been drinking it your whole life. It’s forgetting what you usually order to eat at your favorite restaurant. It’s missing the turn into your neighborhood, where you’ve lived for twenty years.
Alzheimer’s is putting your shirt on backwards. It’s putting your shoes on the wrong feet. It’s wearing clothing that is inappropriate for the weather or the occasion. It’s pairing a dressy blouse with a pair of sweatpants. It’s forgetting how to dress altogether.
Alzheimer’s is not wanting to take a shower or get dressed. It’s forgetting how to put on your makeup and style your hair. It’s using a black Sharpie marker to draw on your eyebrows instead of an eyebrow pencil. It’s brushing your teeth only once a day and washing your hair only once in a while. It’s having a complete disregard for personal hygiene and your appearance, not because you don’t care, but because you don’t know any better.
Alzheimer’s is slowly forgetting the details and memories of your own life. It’s forgetting your loved ones and not being able to recognize them when you see them. It’s thinking you haven’t seen someone in a while, when you see them every day. It’s thinking that you saw someone, when you only spoke to them on the phone.
Alzheimer’s is forgetting where you grew up and where you went to school. It’s forgetting your daughters’ last names or what they do for a living. It’s forgetting your daughters’ graduations, weddings, and other important events. It’s forgetting when your daughters were born. It’s forgetting your own wedding. It’s even forgetting how you met your own husband and when.
Alzheimer’s is having a voice that you no longer know how to use. It’s not being able to join in a conversation or follow along with one. It’s getting upset with your husband because you think he’s ignoring you or not including you, but it’s really that you are unable to participate. It’s having your adult daughter ask you if you have to use the bathroom before you go out and then helping you do so.
Alzheimer’s is having a dirty, messy, cluttered house when it used to be spotless, immaculate, and organized. It’s needing someone to show you around your own house, even though you’ve lived there for twenty-five years. It’s watching someone else clean that house, not because you don’t want to do it yourself, but because you don’t know how to.
Alzheimer’s is having tunnel vision so badly that you’re practically blind. It’s needing someone to hold your hand and guide you around everywhere you go. And, even then, you walk so slowly that it takes you forever to get anywhere. It’s not being able to see something that’s right in front of you, whether it’s a pair of glasses on the kitchen counter or a huge ship passing by in the canal.
Alzheimer’s is needing someone to help you do almost everything, if not just simply doing it for you. It’s forgetting how to read, write, and even spell your own last name. It’s losing everything you’ve learned, everything you know, and everything you have. It is becoming someone else that neither you nor your loved ones know.
Alzheimer’s is a narcissistic thief that does not discriminate. It steals from the rich and the poor, the strong and the weak, the good and the bad. It does not care if you’re black or white, male or female, old or young. It doesn’t care if you have a little or a lot. It doesn’t care if you’re well educated or just plain dumb. Alzheimer’s will rob you blind and you won’t even know it.
Alzheimer’s is a sick and twisted killer. It tortures its victims by causing an extremely slow, painful death. It laughs in the face of those who try to stop it by fighting for a cure. It doesn’t care if you’re a mother or a father, a sister or a brother, a husband or a wife. It has a complete disregard for your relationships with those around you. It will slowly kill you right before their eyes. It likes for them to watch. It doesn’t care about the other battles that you may have already won or lost. It knows that your final battle will be against it and it knows that it will win.
I can’t even put how this makes me feel, I only want to cry!!!!! You described this horrible disease so well!
Lauren,
What a well-written post! I often find that when people describe Alzheimer’s disease as a “memory disease” it really doesn’t give people a clear picture of the day-to-day life of living with AD or caring for someone that has it. I hope some people will benefit from your detailed examples. My dad has had Alzheimer’s for 12 years now and at the beginning we were just told his memory wouldn’t be so great. That’s far from the truth and something that few doctors had the courage to tell us. I’m now in graduate school studying clinical geropsychology with a focus on family caregiving for loved ones with dementia. In case you’re interested, my dissertation is on the family experience of caring for a relative with AD by looking at 2 caregivers in each family. Most research just focuses on the primary caregiver and often ignores other family members that may be interested (even if they are just a little involved). I’m hoping my research will help us figure out how to help family caregivers more effectively. If this sounds like something you might be interested in, I hope you’ll visit the website tinyurl.com/FamilyCaregiving. As a “thank you,” you’ll receive $20 after completing the survey. I wish you the best in caring for your mom. She was diagnosed very early as was my dad (he was 59). I think it’s so sad to see a parent not be able to experience the later part of their life/retirement as they should. She’s lucky to have you.
Jessica, I’m very sorry to hear about your Dad. Thank you so much for taking the time to read my blog and comment on it. It means a lot to me when people who have been in this situation themselves can relate to what I write. Writing is my passion and I hope to use it to reach as many people as possible. Your research sounds amazing and I’m sure it will be very helpful to many families. I’ll take a look at your website. I’m an open book when it comes to talking about my Mom’s Alzheimer’s, but my Dad is very private and doesn’t really talk about it to anyone. I wish you the best of luck with school and your research. I’m sure your Dad is very proud of you. You’re doing a wonderful thing. Thank you again for reading and please come back for more!
Thanks, Lauren. I’m sure you’ll look back on your blog and be glad you decided to record your thoughts, feelings, and the little daily details you’d otherwise forget. I always told myself I’d remember the funny things my dad did/does, but now when I try to remember it’s hard to recall anything (I guess I’m glad I’ve forgotten about some of the challenges as well, but I’d sure like to remember the happy times among the struggles). I completely understand about your dad. My brother is similar, but to the extent that it’s distanced him from my dad. It’s hard for him to accept that our once big, strong, “head-of-the-household” dad is very different from who he once way. Thank you for writing that my Dad is likely very proud of me–he was diagnosed when I was 16 and due to AD hasn’t really been able to see the person I’ve grown into, so it’s always nice to hear other people tell me what he probably would have. I’ll be sure to follow your blog! 🙂
Wow, for some reason, I’ve never really thought of it that way. I’m always writing for “now,” but I’ve never thought about having it to look back on in the future. Thanks for making that point! It’s a shame about your brother. As we know, Alzheimer’s has a tendency to drive people apart. My relationship with my sister is kind of like that, but she still has a relationship with my Mom and Dad. Wow, 16 is so young! I was 25 when my Mom was diagnosed and I’m 30 now. I always thought I was so young, but I can’t imagine being only 16. I’m sure that your Dad would be so proud of you and your work. Best of luck to you and your family.
I discovered your blogs and hope you don’t mind me sharing your explanation of Alzheimer’s. I lost my mama in may and so many people were clueless to our journey. They had no idea how hard this is to go through. I tried to take care of mama as long as I could but ended up having to place her in a facility..I know all about regrets also. Bless you and I will pray for y’all.
Carolyn, please feel free to share with anyone you’d like! I’m so glad that I was able to put into words what it’s REALLY like and that people who have been there can relate to what I wrote. It means the world to me! Thank you so much for reading!