You Gotta Survive

Do you ever get a little bit tired of life?

Like you’re not really happy but you don’t wanna die

Like you’re hangin’ by a thread but you gotta survive

‘Cause you gotta survive…

Like your body’s in the room but you’re not really there

Like you have empathy inside but you don’t really care

Like you’re fresh out of love but it’s been in the air

Am I past repair?

Do you ever get a little bit tired of life?

Like you’re not really happy but you don’t wanna die

Like a numb little bug that’s gotta survive

That’s gotta survive…

Em Beihold

(Lyrics to “Numb Little Bug”)

I have been putting off this blog topic for a long time, because I haven't really been ready to talk about apathy and how it impacted my life during the early onset of my disease, and how it still affects me. This was such a defining symptom for me as I unknowingly began to grapple with this disease and is still one of the most difficult for me to deal with. 

I guess I felt that it was time for me to reflect on this and try to write about it so that others might understand what I went through before, where I am coming from now at times, and perhaps what so many of us who struggle with dementia go through - often silently and feeling alone. 

Apathy is perhaps the least understood and least discussed symptom of dementia. It is hard to describe apathy and not have it sound like it's simply depression. According to one researcher, "Traditionally, apathy has been viewed as a symptom indicating loss of interest or emotions...defined as a syndrome of primary motivational loss, that is, loss of motivation not attributable to emotional distress, intellectual impairment, or diminished level of consciousness." (Marin, 1991). 

I think the key is that apathy is not attributed to something else. It stands by itself but is so often confused with depression. Increasingly, studies are showing apathy is a significant and separate symptom associated with neurocognitive disorders, specifically Parkinson's (a Lewy body disease) and Alzheimer's. 

For me, apathy started to manifest as a feeling of being so overwhelmed that I simply could not do anything. I had no desire - or really even the ability - to get out of my own way. There were so many days that I forced myself to get out of bed and dragged myself to work only to end up leaving early because I just couldn't concentrate, there was too much coming all at once, and I felt completely overwhelmed.

I didn't understand what was happening. I wasn't sad - I didn't feel depressed. I enjoyed my job - had a wonderful loving wife and family - a new grandson that I loved to pieces and was such a joy - and I really loved my life. I couldn't comprehend why I didn't care. It was maddening. I forced myself to smile and to push myself, but it was wearing me down. 

I would set up meetings and then not be able to attend because I just couldn't make myself go. If I did try to go half the time I got lost or forgot why I was showing up so I would turn around and go back to my apartment. I couldn't muster the energy to return phone calls or emails so minor issues that could have been dealt with quickly and easily because insurmountable. 

I head a song on the radio one day by Em Beihold, Numb Little Bug, and the lyrics resonated so strongly with me. I must have played that song a hundred times because it expressed how I felt so clearly. I had empathy inside but I just didn't care; there was love all around me but I just didn't feel it - I wasn't feeling anything. 

Some days were better and I was able to function and I would say, "Okay - I can do this. It was just a phase - let's go...". And then a few days later it would start all over again.  I knew what I had to do - I knew what the consequences were likely to be if I didn't - I knew I was letting everyone down - but I just  couldn't get going. 

This was so debilitating for me toward the end of my time in my last position. I viewed this as such a personal failure. I have always been the type of person to soldier through - to put my head down and get the job done regardless of what was happening. If there was a deadline I always met it - no excuses. It might mean pulling some all nighters or working very late, but the work always got done. 

But now I was forgetting and missing deadlines and it was showing. I was making costly misjudgments because I didn't have the energy or the desire to think through a situation. It was easier to just make a snap decision or choose a course of action without thinking things through.  

I couldn't bring myself to share any of this with anyone - I felt so ashamed and just...tired.... I couldn't stand the idea of seeing Michele's face as she lost respect for me for not being strong enough. I was terrified of losing the confidence and esteem of my colleagues, since I had worked so hard to gain it. I felt defeated and I didn't understand why.

This continued to spiral throughout the winter and spring of 2021 and 2022, really coming to a head for me during that summer and fall. I started seeing shapes moving out of the corner of my eye and hearing someone speaking my name near my left shoulder when no one was there. I was having nightmares that woke me up yelling at the people who were trying to hurt me. I seriously thought I was losing my mind. 

To say that my last year of work was a living hell would really be an understatement. I would never have actively considered suicide, but I started thinking more and more that I would be perfectly okay if I never woke up again. Even realizing that if that happened it would be devastating to my family and friends didn't matter - I just didn't care. 

Ultimately that is what drove me back to see my doctor and to my counselor I had seen after my stroke. That put me on the road to my diagnosis and to treatment. 

Apathy is an insidious symptom and by-product of dementia. Because it's misunderstood and scoffed at, early signs are ignored by both those suffering from it and those who observe it. Continued and growing apathy can certainly lead to severe depression, which further complicates any diagnostic attempt. 

Many who may read this will think - "oh, he was just severely depressed", or "he was going through a mid-life crisis" - "that's not really apathy". And I get that. I thought the same things. Even now I struggle with all this, which is why it's taken me so long to try to write about this.

But I can't emphasize enough that I wasn't sad or unhappy leading up to all this. I enjoyed the challenge and prestige of my job, I loved my wife and my family, made a very comfortable living, enjoyed time with our friends, and was able to live a great life. Michele and I traveled, had adventures, loved our kids, and enjoyed each other's company. I just stopped caring - my emotions flatlined - and I had no motivation. And I didn't understand any of it.

I still struggle with apathy, and that is hard for me and for my family. I sometimes just don't feel like getting out of bed or doing much of anything, but they are less frequent. I understand it all a bit better now and take some comfort in the limited neuroscience that's been published; and because many of my other symptoms of LBD are being managed through medication and treatment, it is not so overwhelming - at least right now. 

So I'm trying very hard not to go back to being the numb little bug, because I am gonna survive. 

References:

Marin R. S. (1991). Apathy: a neuropsychiatric syndrome. The Journal of neuropsychiatry and clinical neurosciences, 3(3), 243–254. https://doi.org/10.1176/jnp.3.3.243