For Thom: 32 Years of Love, and Now, Care
Submitted by Karly Rothenberg via Well Beings Share Your Caregiving Story
My name is Karly Rothenberg, and I am a caregiver for my husband, Thomas Mackay, who has Lewy Body Dementia.
I guess I’d start off by saying I never anticipated any of these things could have possibly happened to my husband and I when we met 32 years ago.
My husband, Thom, was 46 when I met him. He was so vibrant, and creative and funny, and sweet, and sensitive, and romantic. He was artistic, playful, adventurous…all those things you love in a person…a friend…a companion. It wasn’t until after we got married in June 2000, that I started to notice he was having more than normal difficulties, with the environment he was working in, and our daily living.
Apparently, the chemicals he was exposed to at work and the environment he worked in made things more toxic than either of us realized, and despite his efforts to wear masks at work to protect himself, his brain had already been damaged. By 2004 Thom could no longer safety function at work, and so he quit his job, and went on disability.
That’s when we realized he had signs of early-onset dementia, due to toxic chemical exposure. But that was just the beginning. He also had signs of Parkinsonism, which made it impossible for him to use his tools anymore, he couldn’t drive anymore out of fear that he would cause an accident, or injure himself, and he went from bringing in almost 75,000.00 a year to literally nothing, other than disability pay.
We had just gotten married and our chances of starting a family went right out the window because it was no longer safe to bring a child into our home. I couldn’t run the risk of having a baby, and eventually needing to go back to work, and leaving the baby with Thom. It just wouldn’t have been safe. So we decided not to have children. Plus we had no idea if he had any of those chemicals (like copper and cobalt) still in his bloodstream, and we were afraid of the possibility of it causing birth defects in our kids.
Now, 32 years later, somehow I am still fighting for my husband, as his disease progresses, sadly our social life is non existent, and have taken him to see more doctors than I care to mention, but finally we found a neurologist just this past year, who is properly treating him. Sadly, his disease has obviously worsened, and we recently received a more extensive diagnosis of Lewy Body Dementia. Now Thom faces a whole new journey, and every step is so frightening I’m not sure who is more afraid, me or him!
He seems to be going in to the hospital almost weekly for test after test after test, or physical therapy, or speech therapy, and since I am his caregiver, I am taxi, guide, and memory bank necessary for all of these visits. I have to keep track of all of these records, appointments, paperwork, the schedule, sometimes I just want to scream! But I can’t of course. That wouldn’t help anyone…I just am alone is all. We don’t have any family out here, so I don’t really have any support to cope with all of this. I guess that the scariest part now is that very soon he will need full time care, and I am absolutely terrified at how I am even going to approach that whole issue! Not only financially but also emotionally. I don’t know whether or not I should try and care for him full time in our home myself, which would mean I would have to quit my job..(something I can’t afford to do) or worse, find him a memory care unit to live in, which is even scarier to think about! It’s all too overwhelming!
I’m also a teacher / actor / voice actor, so finding time to fit in that self-tape audition is never easy…but somehow I’ve got to, because my part-time teaching job isn’t paying the bills, and SAG AFTRA Medical is my only resource for medical insurance! Ugh!!!
Anyway, I guess there is a lot more to this caregiver thing than I initially realized there would be in the beginning, so I would say, to offer advice to a new caregiver, make sure you find a support group, or a community to reach out to, so you can ask for help. It’s way too hard to do this thing alone! You need the support of other folks who are going through the same thing you are, near you, in your community!
Ok, that’s all I got! Keep us in your thoughts.
Luv and light,
Karly