Imagine going to war and giving 110 percent of your efforts day-in and day-out all while knowing that at the end of it all you will not be victorious. With as unfair and fucked up as that is, there are individuals that fight that very battle every day. Their enemy is not another tangible being, but rather a disease. A disease known as Alzheimer’s.

We almost always hear how Alzheimer’s affects the person who has the disease, yet we never hear from the perspective of the family members who fight an even tougher battle: watching the degeneration of their loved one right before their very eyes. I am writing this article to give you a firsthand perspective on what it is like dealing with a loved one whom has Alzheimer’s. More importantly, I am writing this with the hopes to increase awareness of this malignant disease so we can give it the appropriate attention it so forcefully demands.

On October 19, 2014 I lost my Nonna (grandmother) to this horrible disease. Let me tell you, I applaud any individual or family that has dealt with or is currently dealing with this disease. It truly takes a toll on you: physically, mentally as well as emotionally.

You become physically drained because you stay up hours at night scavenging the Internet hoping, wishing, praying you find a cure. You know one does not exist but, dammit, it is worth a shot. You cannot help but think that somewhere out there, there is one. For the time being you try every home remedy possible just to extend the time you have with your loved one. You do this not only because you know your time with them is limited and every day is a special one, but also with the hopes that by some freak chance, amidst this prolonging of the disease, a cure will be created and all their troubles can go away. As time goes by and you have exhausted numerous types of home remedies and they only seem to be getting worse. This in itself can take a mental and emotional toll on you.

There are times where you get frustrated—very frustrated—because no matter how much you may try to convince them you are their grandson, daughter, niece, cousin etc. they still do not believe you. You want to get pissed off and yell, but you know you can't, because it is not their fault. No matter how many pictures you may show or stories you tell, in their head, they have no idea who you are. Imagine that? Someone you grew up with and shared experiences with all your life gets to a point to where not even your face is recognizable or they believe you to be someone else. Your level of frustration then reaches a point to where, often times, you just give in. “Yes, Nonna. I am Phil, we use to go to school together, now get some sleep.”

There are times where you are filled with anger. There are times were just seeing them makes your blood boil. You wonder where this anger stems from, and if it is because of what they are doing, who they have become, or if it is for no reason at all. You come to realize that it is often times all the above and it is not your loved one that brings about this anger you feel, but instead, the disease itself. You get angry that this disease is taking away your loved one right before your very eyes and there is nothing you can do about it. You get angry at the fact that someone who was once full of energy and vigor, now just sits there… Lifeless. You get frustrated with the fact that you use to talk to them for hours, and now you sit there with them for hours talking to yourself. You get angry that this disease can make someone who is loving, hate. Make someone who is gentle, violent. Make someone who is kind, mean. This anger and frustration then breeds confusion as to how something so evil can happen to such a kind person. This confusion can make you question your life, your god and sometimes everything you believe in.

Then there are times where your heart literally aches and chest feels as though you have an anvil resting on it because with as much as you want to help and take their pain away—you can’t. There is this constant elephant in the room that you try and cover with phrases like, “it’s going to be okay”—and for that moment, it is. Then that elephant makes noise through the actions of them having a panic attack or seeing things that are not there. Again, you try and comfort them by pretending to get rid of the man standing in the corner or by smashing the spiders that are all over the floor. Sometimes this works. Other times no matter how many spiders you smash there are always more, leaving the sense of hopelessness resting on your shoulders. Every day they become more of a victim to the disease and every day that weight of hopelessness builds and becomes increasingly heavier. Yet, you try your hardest to maintain the highest level of optimism possible. Sometimes you want to give in to that hopelessness and accept defeat, but for the sake of them you don’t. You feel as though you need to be strong, most of the time for them. Other times, for your own sanity, because if you were to give up on them that weight alone would be enough to crush you—far quicker than that of hopelessness. So for the time being, “Yes, Nonna. You did much better than yesterday, but you should get some sleep.”

Amidst this volatility in one’s emotions you always somehow try and find the good in the situation. Like when your loved one misplaces your shoes, phone, wallet or purse and instead of getting upset the entire family turns this brief mental lapse into a scavenger hunt. Or when your loved one swears there is a child in the room and instead of denying its existence you and the child play patty cake. Not to insult your loved one, but rather to see them smile. You know the child is not there, but you would much rather bring that brief moment of joy to your loved one instead of reminding them that they are mentally ill.

We tend to get lost in trying to find “the best home remedy” to cure them of their mental illness, when it is love and compassion that is the most effective. Pills do help in prolonging the effects of the disease, but it is the loving and caring for them while they are here that is the most impactful. Anyone can give them pills, but it is when those pills are accompanied with some good ol’ fashioned TLC that makes the biggest difference. This, to me, is “The best home remedy” when caring for one with Alzheimer’s. We know that the future is not promised for them, which is why we should love them unconditionally and make the remaining days they do have something special. Although they may not be able to remember your face, they will definitely be able to feel love, whether they may express it or not.

The truth of the matter is that Alzheimer’s and various forms of dementia are not uncommon. About 1 in 3 seniors die with Alzheimer’s or another form of dementia. An even more staggering fact is that according to the Alzheimer’s Association, Alzheimer’s is the 6^thleading cause of death in the United States. It is responsible for more deaths than prostate cancer and breast cancer combined. There are more than 5 million people in the U.S. alone who are currently living with Alzheimer’s and even more people who are suffering from it. Suffering not from the disease directly, but as a side effect from caring for a loved one while they undergo this horrible mental illness.

According to the Alzheimer’s Organization in 2015, 15.9 million family and friends provided 18.1 billion hours of unpaid care to those with Alzheimer’s and other dementias. That care alone had an estimated economic value of $221.3 billion. They are the real heroes. Dealing with Alzheimer’s is no walk in the park. It is extremely demanding—in all forms of the word. Which is why we need to raise awareness for this atrocious disease. Not only for the sake of the mentally ill, but for the families and individuals who sacrifice everything to take care of those who are diagnosed. With that being said, donate to organizations like Alzheimer’s Foundation of America that provide support for the families of those who are diagnosed--financialy and emotionally. Or volunteer at a local old folks home. Hopefully we can find a cure, but for the mean time additional support to the families and the diagnosed can have just as big of an impact.

In Loving Memory of Anna "Nonna" Van Horst

September 7, 1941 - October 19, 2014