What's Next?

 I've been looking back on this blog and I realized that I didn't write much last year.  Apologies. It was a strange year, and I struggled a lot.  There are things I have hinted at or alluded to, dear readers, but not addressed directly.  It's time, I think.  Forces of Chaos began as a way of addressing my issues with clutter.  I still have some of those issues, although writing about them has helped me see them more clearly and thus deal with them more effectively. I will likely still write about physical clutter here and there.  But for now, the blog will be shifting gears a bit.

Here's the deal...my husband of almost 27 years has irreversible damage to his brain.  I have been pushing for a diagnosis for him since August of 2018. I have a notebook full of documentation of odd behavior and inconceivable memory loss. My youngest son has nicknamed it "the book of crazy". Not in a mean way but more of a "we need to laugh or we'll be in the corner sobbing" sort of way. I've seen eye rolls and been accused of jumping the gun.  I've been told that I am not a professional and that I can't possibly know what if anything is wrong.  But I can.  I have known this man since I was 18 and he was 20.   My husband has had blood work and MRIs.  He has seen his PCP, a neurologist, behavioral health, another neurologist and finally last fall, a neuropsychiatrist who is at last taking this seriously.

Sometimes I think people feel I'm exaggerating or being overly dramatic.  That and the fact that we do not yet have an official diagnosis, has made me hold back a bit in writing about it.  However, the doctor has finally stated that there is absolutely something wrong.  He even asked me what I thought was wrong.  He and I are on the same page with our suspicions. "You've used some advanced medical technology in your notes," he observed.  "You've done your research."  I replied that I had a child on the autism spectrum, a child with epilepsy and I had had five unexplained miscarriages.  "I know that you have to be your own best advocate," I challenged.  I'm not sure if he was impressed or appalled. One more round of neuropsych testing has been scheduled and will be completed within a couple of months.  Then it seems likely we will finally have a diagnosis.  I've been fighting for it.  I badly want it but also not. 

There is a possibility that the brain damage is a result of years of poorly controlled diabetes.  However, it is much more likely that my husband has frontal temporal dementia.  It is the most common form of early onset dementia, although it is not common.  There is no treatment and no cure.  Unlike Alzheimer's disease, there is not even any medication which may potentially slow it down.  It is always fatal.  My husband is 54 years old.

I mourn the loss of the partnership.  I feel unprepared for the loneliness and hard work of caregiving.  The future is always uncertain but mine feels especially so.  Sometimes I want to say "I didn't sign up for this" but of course I did.  I said "in sickness and in health" and I meant it.  I'm not looking for sympathy here.  I write to sort things out.  I write to better understand what is happening.  And as always, I have hopes that my words will resonate with someone, somewhere in some way.   If I touch another life and somehow make it better, then I have made an impact.  I have met some amazing people in online support groups who are going through similar things but I find I want my friends to understand.  And his friends too.

His particular brand of dementia has robbed him of memory, made it challenging for him to follow the conversation some days and has changed his personality.  He is losing his empathy, his context and his initiative.  Someday in the not too distant future, he will lose his ability to function.  

Buckle up my friends.  It's likely to get bumpy.