What it Really Feels Like to Have Alzheimer’s

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Every 66 seconds, someone in the United States develops Alzheimer’s disease (AD). AD is the sixth leading cause of death in this country, and over 5.3 million Americans currently suffer from it. It is the only cause of death in the top ten that cannot be prevented, slowed or cured. There simply are no survivors.

These staggering numbers lead to a safe assumption that every family is or will be touched in some way by this brutal disease. I was diagnosed with early onset Alzheimer’s disease in 2010, and this is my take on what it is like to live with AD.

The Search for Answers

“When will things get better?”

This is a question that dementia patients and their family members ask often. Everyone wants answers, but there are few certainties to be had when dementia is involved. “Experts” do their best to explain all the nuances of the disease, but do their answers coincide with what a patient actually goes through? Can they truly tell you what it’s like to be a person living with this horrible disease?

Here is my take on this disease from a patient’s perspective: Things will never get “better.” The difficult behaviors and frustration will sometimes subside. You will see glimpses of your loved one from time to time. But, “better” simply is not possible with this progressive condition.

The Hard Truth

I have read that sometimes the posts in the Caregiver Forum are hard to deal with. What I consider hard to deal with is being aware of the fact that I am slowly losing my memory.

I take my granddaughter to school, listen to her stories and know that one day I probably won’t even recognize her. I will likely not see her graduate, get married or have children. Dementia has a predetermined outcome for me.

It only takes a little from you at first—a few of your short-term memories here and there. Then, slowly but surely, it takes all of them. In time, it begins to take your long-term memories as well. Eventually, they will all be gone.

All along, you realize that this is happening, and there isn’t a single thing you can do about it. I often think about what will happen when I can no longer remember who I am or who those are around me. What will it be like? Will I be scared? More scared than I am now at times? Is that even possible?

What Is Alzheimer’s Really Like?

I have been asked many times, “What is it like to have early onset Alzheimer’s?” I think it is important for people to understand what dementia patients truly go through, rather than relying on expert speculations. So, this is the answer I have come up with in an attempt to describe my experience:

There is a drug called midazolam (Versed) that is used for minor surgeries, dental procedures, etc. I used it a lot in my EMS work back in the day. This drug induces sleep and inhibits your ability to make short-term memories. It takes effect quickly and is short lived, but the effect is astounding. Someone who has been given Versed will have no recollection of anything that has happened in the ensuing minutes or even hours.

Imagine giving this drug to someone. Then, have them awaken in a building they have never been in before that is full of furniture and items they do not recognize. Give them five minutes alone in this unfamiliar place, and then, one by one, have complete strangers enter the room and talk to the person as if they have known each other their entire lives. Have these strangers talk to the person as if one of them is their daughter, their spouse and their pastor. Have these strangers express concern for the person’s loss and assurances that everything is going to be alright. The entire time, this person will be wondering what in the world is going on. Then, have all of the strangers exit the room. Leave the person entirely alone to ponder what just transpired.

This simple scenario does not even begin to show what a dementia patient goes through, but it is far more accurate than something like the “Virtual Dementia Tour.” How do I know? I am a patient, not someone who talks about dementia as if they have had it. I live with this disease day in and day out.

“When will it get better?” It won’t. The only time peace will come for patients is when we pass away. Isn’t it strange that, for me to finally find peace with this disease, everyone around me must then grieve? That is dementia.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

While I Still Can

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26 Comments

So devastatingly true! My husband is into it for 10 years now and he is entering the last phase. He is up and into things now just like a toddler. He opens every door, opens every lid, ate a big piece of soap yesterday, looks into every close. I asked him what he was looking for and he said, "I just want to know what's in there." He has already looked in there 20 times today! The poor guy. I wish I could end it for him right now, but physically he is really in good shape. He can still walk and he can still eat! Two things that lots of Alzheimer's patients can't do!. He is physically strong. I feel like it will never end. The very worst part is that he has had diarrhea for two years now. So much mess to clean up every day! It is making me old and I am not old! It is terrible for the patient and terrible for the wife of the patient! Make no mistake about that.
I have epilepsy. It is controlled with medication, and I haven't had a seizure since 1984, but when I wake up from a seizure, I will have no memories of anything. I won't know my name, I won't know the people around me, although I may recognize that they look familiar or friendly in some way. Oddly, only one piece of information sticks with me through everything - that I have epilepsy and probably had a seizure. Weird. So my brain also knows what is happening, even while I can't recognize myself or others around me. This will go on for about 45 minutes while I slowly come out of it. Scariest thing in the world.
Thank you Mr. Phelps for giving us an honest glimpse of what you are going through. I cared for my father for a time while he was on his journey with Alzheimer's. It was devastating to watch him slip away little by little. He was my father so I think that had a great deal to do with why he was unwilling to discuss what he was going through with me. I think he thought he was SUPPOSED to be the strong one and not worry or scare me, but I longed to connect with him in a way that wasn't a father/daughter thing; a connection in which he felt he could share his fears and other feelings so that he did not have to go through it alone.

You are a wise and brave man to share your thoughts and feelings on this subject since by doing so will educate so many. Sharing benefits you and all those around you. Many blessing to you and your loved ones. I will follow your blog to understand this insidious disease a bit better, but also because I want to share your courageous journey.

Live well.