4 years ago Ben & I were a golden gay couple, social, successful and super-happy!
Two years ago I knew nothing about Lewy Body Dementia, Alzheimer or any other degenerative neurological disease! All I was concerned with was keeping my husband safe from Covid since he was in the “high risk category” (pre-existing health issues & 80) and he was still working at Saks 5th Avenue, until he was forced to quit because at that time, there were no vaccinations available and he could have died should he have contracted Covid!
We sequestered ourselves in our well appointed 1 bedroom, jewel box apartment on Sutton Place, with no other place to escape to like many of our wealthier friends, trying to have as much fun as we could being by ourselves! Ben was now living on his 401K and how Social Security since he was no longer getting a check from Saks, that was for 3 years!
For many years now. I’ve been building a community of creatives with a tech startup platform called Sohomuse to promote & connect creatives and because of my career background as the Fashion Director of MTV and all the celebrity styling I’ve done throughout my extensive career I’m proud of what we’ve created! However, that doesn’t pay enough to support us both now! So I created an online e-commerce site called Ben-Mo-2.0 Online HomeGear-Athleisure site to try and earn extra income to off-set all our new expenses!
Ben wanted to get into voice overs and acting gigs so my friend & business colleague Consuelo helped him get a good agent… and fortunately and not surprising the gigs started pouring in since Ben has a great speaking voice and his distinguished look fits a much desired demographic age group, however he was having issues remembering his lines! “Hmm, that was odd I thought”. Well that didn’t work out so well!
In 2022 Ben was having multiple issues with his health, having numerous instances where he would fall or have neurological seizures where I had to rush Ben to the emergency room! The last time Ben fell on the sidewalk, I rushed him to the ER and he was checked into the hospital for a week! He was subsequently diagnosed with Type II Diabetes!
When my husband Ben’s neurologist calmly stated after test results from an MRI, that he was diagnosed with Lewy Body Dementia, I thought “oh, that doesn’t sound so bad”… but WOW was I wrong!
Our lives are quite different now than they were at the same time last year! I can’t explain how surreal life has become… I wouldn’t wish this hell on anyone!
This year I’ve felt extremely overwhelmed, defeated and completely inadequate having to deal with all the legal, medical, psychological and financial issues of slowly watching the person you love disappear and me disappearing to him too!
Because of LBD and the unforeseen expenses that go among with this we’ve been put in a financially vulnerable situation where we were going to lose our apartment, I had to make instant decisions concerning Ben’s finances, I launched a GoFundMe in March to pay for back rent of old bills that Ben wasn’t able to pay, but to do that I needed to get a POA because nobody would legally talk to me until I had that in place inspite of me being legally married to him!
That was just one of the many small hurdles that I’ve had to overcome..now multiply that by 1000! Everything has been an arduous process from catching up on the bills, applying for Medicaid to get in-home healthcare support because Ben’s disease bas progressed exponentially and I simply can’t keep up with everything that needs to get done! Sometimes I forget to eat, I drink more now than I ever have simply to get through the day and week! I can’t work my usual freelance gigs and after 3 years of not being able to work and travel because of Covid, I’m financially spent! In fact, I’m spent on every level!
Now I know I need psychological help too…because I’m an emotional mess who’s become reactionary and emotionally volatile and abusive towards my poor husband who can’t help all the f’d up things he does now and all because of his disease! Ben is truly a kind and loving husband but his disease has made him physically weak and sometimes a danger to himself which scares the crap out of me!
I need help too now… because once we were one… now it seems we’re adversaries! We are a much changed couple and sometimes I don’t know how I’ll get through the day and it breaks my heart, soul & spirit!
But I thank you for making me feel less inadequate with this “caregiver” nomination!