My name is Michael Ellenbogen, and I am living with Alzheimer’s. I was previously a high-level manager in the telecommunication industry. In 2008, I was diagnosed with younger-onset Alzheimer’s disease (YOAD) after struggling to get a diagnosis since my first symptoms at age 39. I was a workaholic so losing my job and not being able to work had a huge impact on my life.
No one realizes how seriously disabled I am. If I had a visual ailment, it would be obvious. I don’t want them to feel sorry for me or pity me, I just want to be understood and given the same opportunities as everyone else with disabilities. Many people say I do not seem to have Alzheimer’s, and that frustrates me. Let me tell you what it’s like to live with this debilitating and progressive disease.
When I go shopping and look at items, most of them never really register in my mind, even though I see them clearly. I have trouble making decisions; I question whether I am making the right one. I can no longer enjoy my favorite hobbies, as they require processing skills that I no longer have. I went from being a gadget person, to being threatened by technology I no longer can use. This is what I deal with and so much more.
I go to a happy affair only to be tortured by the noise and surrounding conversations, because the loudness cannot be filtered out. If people try to speak with me in a public setting where there are many other conversations taking place, I don’t understand what they are saying to me. This is because all of the people speaking come in at the same volume level. All the words run together, and it sounds like a foreign language.
I went from being extremely proactive to becoming much less active and motivated. I leave things around the house and don’t put them away because I don’t know where they go or feel I may not know where to retrieve them again. One moment I am nice and another I may fly off the handle. I can no longer write or speak like I used to. My friends slowly become distant and usually speak to my wife. I do realize this.
I am losing my mind and see it happening…
I worry every day about the challenges ahead. Even worse, I am losing my mind and see it happening, but I cannot do anything to change the course. People always say, “If I can do anything just let me know.” If I take them up on that offer, they back out of their commitments.
I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer’s disease. While some may be sympathetic in the moment, there appears to be little follow-through. This is very upsetting because I feel as though it affects me personally as well as the millions of others living with the disease. I was always there for others when they needed it and now I feel alone.
While many people just coast through the day, I have to use 110% of my processing skills to do most things, which increases the stress and frustration. The worst part about this disease is knowing that I am doing all these things wrong and have no way to control or stop it, and it’s only getting worse as the days go by. I used to save lots of money by doing so many things around the house. Now I have lost the drive, determination and skills needed to do those things. Many times I hurt myself trying or make it worse.
I see my wife becoming stressed, depressed and overwhelmed…
I cannot begin to explain how it tears me up inside to see my wife struggling to do the things that I once was capable of doing and now I cannot do a thing to help. I realize that one day I will no longer be able to drive and this devastates me. I see my wife becoming stressed, depressed and overwhelmed, but all caregivers know things will only get worse. Sadly, they keep telling themselves that they can do it all even when we know they will need help.
As a patient I see it definitely. My wife is on the road to hell, and she does not even realize it yet because she is so busy trying to block it all out. The worst part about all this is I have not even reached the worst stage. That scares the hell out of me.
People think they knew what Alzheimer’s is, but they don’t.
I have been so surprised by the stigma associated with this disease. It comes at you from all angles. People think they knew what Alzheimer’s is, but they don’t. I see this not only from people living with dementia but many media health correspondents, physicians and organizations that are geared to helping those dealing with the disease. I have learned not to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated differently. I see this disease like HIV used to be. The people who have it are so afraid to let others know, including family. I do not get it. We did nothing wrong to get this disease and we need to speak up to let our voice be heard. No one should be ashamed of having it.
The simple truth is, if you have not been touched by this devastating and debilitating disease yet, consider yourself extremely lucky. Sadly, often it’s just a matter of time before it touches you. It is my hope that my actions today may prevent future generations from suffering with this disease. So give yourself piece of mind and do something today. I hope that what I am doing will allow me to leave this world knowing that I did everything possible to make that next generation have a fighting chance. There are no excuses for not wanting to help. The human cost factor is too high, and we are all accountable to do something.