It’s not just about losing your memory.

People misunderstand how Alzheimer’s affects the lives of caregivers and those with memory problems.

Often when people speak about Alzheimer’s the first thing you hear is a whisper that the person with dementia does not recognize someone close to them. This is shocking when it happens, but sadly there are a lot of big hurdles caregivers and individuals with dementia have to overcome before getting to that point.

Someone with dementia loses the ability to drive. This is one of the biggest complaints from the elderly. Many people who live in assisted living facilities say getting used to not driving was much more difficult than moving to a facility.

Patients also need to accept help from family members and caregivers, even when they don’t think help is needed. In reality, someone with dementia requires assistance for simple tasks like going to the bathroom, paying bills or running errands.

There are many mood swings, which can be quite vicious. They sometimes reveal misplaced anger directed at those who help the most.

There is paranoia, which comes suddenly and usually has no explanation. As a caregiver you are taught to redirect when these sorts of events happen. It’s mighty hard to change the subject when a dementia patient is on a paranoid rant that someone is trying to kill them.

There are hallucinations, which can be reported as dreams. Sometimes the stories are funny. Sometimes they are heartbreaking. Sometimes the hallucination is happening when your loved one is wide-awake. What do you say when someone with dementia insists your deceased father is in the room?

Someone with dementia can go from moving feebly to actively wandering with a renewed spirit. As a caregiver, you’d be surprised how far someone can go when unaware of any limitations.

Alzheimer’s leaves you slipping in and out of reality while knowing your memory is slipping away. Someone with memory problems can be very lucid about one topic and very confused about another in the same conversation. When you have memory problems, you can sense the looks you get from people when you say something that isn’t quite right.

When you have dementia you are unable to comprehend what people are saying. This makes someone with dementia think they have hearing problems. That’s the only thing that makes sense.

Someone with memory problems is constantly relearning information but often remains 100% clear on activities from their youth.

Someone with dementia is no longer able to determine what is best for their own well-being. Thinking things like, “I don’t think I’ve eaten today,” right after eating a meal or not noticing that your hand is on a hot stove.

You are no longer aware of your bodily functions. You have no idea when you might have to go to the restroom. Once you go to the restroom, you have no idea you have gone (remember, you are wearing a Depend). If you have dementia, you’ll likely find it impolite if a caregiver quietly suggests it is time to go to the restroom for a change.

After those hurdles someone with memory problems loses the ability to recognize people.

Later?

One loses the ability to speak, eat, swallow.

There are a lot of caregivers who speak quite candidly on the Internet about dealing with Alzheimer’s and other dementias. It’s time the general public’s understanding of Alzheimer’s moves past the “he doesn’t recognize me” description and acknowledges the struggles caregivers and those with memory problems suffer on a daily basis.

It is important for the Alzheimer’s conversation to evolve. I’ve been thinking about this a lot and I’d love to hear your thoughts.

Thanks for reading and conversing. I write about culture, designing for disabilities, business, science and health and the intersection of all of these things. Explore more on Medium and my website or contact me.