This post comes to us from The Mighty. It’s always great to ask the people themselves what they think, feel, and wish others understood about them, and this post does that. PLUS, it has some great images that you can share to spread the word.
The Mighty has edited and shortened answers, and I have also done a bit of editing myself – you can click on the title, below, to see the original article on their website. The answers have a flavor of loss-based and sad, but they are still real answers from real people and I think it’s important that their voices are heard.
Please add your answers in the comments below – what do you wish people understood about Alzheimer’s disease?
Every 67 seconds, someone in the U.S. develops Alzheimer’s disease, according to the Alzheimer’s Association. It is now the sixth leading cause of death in the country. Because the condition is so prevalent, we figured it’s time to clear up some of the misunderstandings surrounding it. The Mighty teamed up with Hilarity for Charity, a part of the Alzheimer’s Association, to ask our readers affected by Alzheimer’s disease, what they wish the world could understand about it.
This is what they had to say:
1. “It’s not a part of getting older. There’s a misconception that as you get older you become forgetful and Alzheimer’s is just a continuation of aging, but it’s not. It’s a terrible disease, not a part of aging. It’s not something that’s inevitable or just happens. It’s something we’re trying to fight to bring awareness to because with funding and research there can be hope.” — Stephanie Vasquez
2. “Be patient with those who have it. Repeating and forgetting require compassionate responses, not exasperated ones. The disease might hide the person underneath, but there’s still a person in there who needs your love and attention.” — Jamie Calandriello
3. “I wish people understood how scary it must be for the person going through it.” — Tbird O’Leary
4. “The disease is still progressing… even though helpful medication exists, there’s still no cure, and we have to keep fighting to find one.” — Sally Noelle
5. “Just because he looks fine at this moment doesn’t mean it will be the same in five minutes, tonight or tomorrow.” — Nikki Dodson
6. “[People with Alzheimer’s] can’t change the way it makes them act anymore than a cancer patient can keep the cancer cells from spreading.” — Brandyn Shoemaker
7. “I wish the world knew how heartbreaking it is to stand beside the woman who was the first one to ever call you by your name and realize she doesn’t know who you are. I wish they knew the joy it brings when she suddenly looks up at you after you’ve sat there for hours massaging her hands with lotion and says, ‘I love you, kid.’ It’s extremely hard to mourn the loss of my lifetime companion, my mother, while she’s still alive.” — Nancy Elizabeth Faram
8. “Rational thinking is gradually lost with Alzheimer’s, so don’t try to reason with someone with this disorder. Instead, distract them in as gentle a manner as possible. If they get angry or defensive, listen until they’ve said what they need to say. And remember, each time you interrupt or argue, you increase the duration of the conversation without resolving the issue.” — Rex Bierley
9. “It’s not simply forgetting things and people. It’s delusions, hallucinations, anger, poor judgment and personality altering. These things can come and go and the person suffering and their loved ones are on a continual and unknown roller coaster.” — Kimberly Crawford Bowman
10. “They’re not doing this on purpose.” — Denise Christy Reich
11. “The reality of this disease is that there’s no remission, there’s no stopping it, there’s no slowing it down, there’s no cure and there are no survivors.” — Suzanne Tackett
12. “One moment there’s clarity, and they look at you lovingly and say your name. A second later, they look at you frightened or confused because you look familiar or they don’t know you at all.” — Samwise Gamegee Works
13. “Even though behaviors have changed — the person you remember is still in there.” — Roxzan Sukola
14. “It’s an epidemic.” — ljsharp
15. “It’s not just memory loss. It robs the person of who they are and the ability to do the most basic tasks.” — Janice La Bella
16. “Losing some memories doesn’t make the still present ones any less important and meaningful.” — Molly Halla
17. “I wish people wouldn’t ask how my mom is doing or if she’ll get better. I wish people understood that Alzheimer’s is currently a terminal disease and that caregivers have to watch their loved ones waste away in front of their eyes. It’s often a painful thing to discuss [because] every time they ask, the person is worse than before.” — Michelle Raza
18. “[It’s] devastating when a person who helped raise you completely forgets who you are.” — Odalys De Leon
19. “The caregiver, much like with any disability, carries a huge load. They need our support and love.” — Walking With Drake
20. “It’s not your fault.” — Rain Mom
21. “It’s the worst. People can’t handle it so they stay away. It’s isolating and lonely.” — Lisa Begley
22. “Although your loved one may not remember you or might do things that frustrate you, this is the time when he or she needs you the most. Your loved one needs you to care, to advocate, to be patient, to love and to be vigilant. Don’t turn your back on them.” — Angie Nunez Merryman
23. “I wish doctors would realize that the person with Alzheimer’s has thoughts and feelings about their care. Look the patient in the eye instead of talking to a family member and asking them questions as if the person who has Alzheimer’s isn’t there.” — Cynthia Adams McGrath
24. “You can’t explain what it’s like to mourn someone who’s still alive unless you’ve experienced it firsthand. It truly is the long goodbye.” — Jessica Seay-Soto
25. “[It’s] important to remember those who have Alzheimer’s as they were before the disease and to keep that person in mind when learning to cope with the disease.” — alib13
26. “The person who has Alzheimer’s knows that pieces of the puzzle are missing, and they are terrified.” — sheilamcphierasak
27. “To lose a loved one is always sad, but losing a loved one bit by bit is so sad. It’s horrible to watch someone you love struggling to find words and trying to remember things they realize they should know. You feel so helpless seeing someone looking lost, and you try to take away that fear.” — Jeanette Maxwell
28. “I wish people understood the unique experience of grief and loss that comes with Alzheimer’s. My dad was 64 when he was diagnosed, and we’ve been living the loss of him for four years now, even though he is still in our presence. I can still hold my dad’s hand, but I miss him every day.” — Anna Copley
29. “Alzheimer’s patients are people, not patients. They are husbands, wives, brothers, sisters, bosses, employees, sons and daughters, all of whom were robbed of time and the ability to continue to chase their dreams and live their lives freely.” – nicoleadeline
30. “Referencing ‘The Notebook’ doesn’t mean anything to me. [My mother] not recognizing me is the least of my worries because she no longer knows how to swallow.” — fancyy77
31. “It can happen to anyone, young and old… my dad was 49 when diagnosed.” — karli_anne1012
32. “I wish other people would understand that the person affected by Alzheimer’s is not a child or a toddler, as I have heard people casually say to me. Yes, they have childlike qualities, but people have to understand this individual is still an adult, and you can’t treat them as you would a kid. My mom can notice when she’s not getting the respect she deserve.” — a11ofthelights1832
33. “They may not be able remember who we are, but they feel us just the same.” — Amanda Dillon
What would you add to this list? Let us know in the comments below.
Visit Hilarity for Charity to learn what they’re doing for Alzheimer’s disease.
You have to have patience with Alzheimer’s disease. If you don’t have much of it already, it can teach you how to develop it.