"What about Us?"

The hardest part of your early stages is thinking about the above. What about us? It's okay to think selfishly and say, what about me?

So this is my first non-"New Diagnosis Post." The stages of grief as a caregiver are weird. I feel so isolated and alone while my husband is really facing this too. I don't personally know anyone else going through what I am going through. I have met some online, but not a lunch date, let's chat type of relationship. There are so many thoughts in my head, but mostly it was "what about me." What am I going to do with my life now? Selfish, maybe, but I am honest over everything.

I have been fortunate to have a great career, savings, credit, etc. So I know many others have a worse situation, and that is much scarier in terms of how they will manage financially. I was always okay if I was to be alone; I can support myself financially. I married later and had many years on my own and established a career before family.

Why am I angry and sad? It's the loss of my best friend, the person I thought I would grow old with, that has me so pissed. We had plans. We wanted to travel, buy an RV, see all the parks—just little things we always talked about—but now they have to be today, this year, present, because we don't have the 10 years for when I retire. And guess what, I'm even more pissed now because of the disease, his anxiety, and the ability to travel is getting harder and harder. His personality is so off the charts some days that it's not always worth the effort to get him moving outside of his comfort zone.

The parts that are not talked about are the anxiety that comes to the patient. They function very well in their own environment (at times). So what I am saying is simple tasks they have done every day of their life or their "muscle memory" they can continue to do with little issues, but sometimes you need to remind them.

The new twist is trying to plan and do things that don't fall in line with their day. I tend to refer to the movie "Rain Man" to explain to family or friends. Remember when Dustin Hoffman's character Ray had to be home to watch the People's Court, and he kept repeating it? I see this type of "hyper-focus" in my spouse a lot. As a matter of fact, he so hyper-focuses on it that many times I just give in and say, yep, okay.

Why? Because you will learn you cannot talk sensibly or reason with your spouse with this disease. It screws with you too, because so many days early on, things seem normal, but then "Judge Judy at 9 pm" kicks in, and it all goes downhill. Many times we have turned around and headed back home due to his anxiety kicking in full drive.

There is an Us; it's just a new definition of us. We are friends, but I am also a caregiver. Though I say I am an empty nester, I am indeed not. I have a new bird to take care of, and he tries my love and patience every day, and he doesn't even know it. I miss having intelligent conversations, laughing at jokes, funny movies with a plot, the ability to jump and go.

"What about Us?" Pink