Wife Diagnosis (35yr) Rant
Maybe I just need to get this out. My (35yr f) wife was diagnosed coming up to 2 years in November. So far it has only affected her arms. It started with her feeling at the time a pinched nerve but now we know it wasn't. She was going to a chiropractor thinking she needed an adjustment. she felt some relief but it was still there. scheduling with the PCP was a hassle and would drag out for months. later on we noticed that her grip strength when holding a pencil was changing and becoming challenging but still pressed on as we had to wait for our PCP at the time to let us know if she was approved to get an MRI. This was especially hard to because she is an artist and her mediums she used were watercolor and acrylic so she needed her hands to work. During the holidays she would make/design Christmas ornaments and find joy in selling/gifting them to others. That November she was at a farmers market trying to paint some ornaments and she had become award something was terribly wrong as she was making lots of mistakes. I jump in during this to help so she doesn't feel like she can't continue. After almost 3-4 months of no movement her boss at the time told her to go to the ER and they'll give us a MRI. Before we did that, we changed PCP and instantly knew that something was amiss sent us to a spine specialist who finally gave us/her the urgent green light to go to the ER to get the MRI. The MRI was performed and instantly they call us to a neurologist. After the hot potato from doctor to doctor they finally gave her the news about 2 weeks later out from the hospital. The news made our heart sink and drop crying for weeks it was hard to return to work. so me, I(37yr m) the husband work as an architectural designer and have been for a little over 10 years. Since the onset of disease, we have had to make a life style shift while trying to have her life her life in this new normal. apart of the new normal is me being the husband and caregiver and I enjoy taking care of her and at all time try not to make her feel like she's a burden or in the way ( sometimes she struggles with that but she my world she could never) with that being said i feel like my firm or companies just don't understand what goes into being a caregiver. To wake up get ready then get her ready as she needs help getting herself ready for the day, i cant make it to work at the time they need me in. Ive discussed this with them at nauseum about this and asked that i can also work later or on the weekends as well if needed. Yet i get called into the meeting room to discuss how i can be on time. Its so frustrating that i wake extra early for this, prep the day before, stay late, cut my lunch time to make up for the time, and yet I get called out and reprimanded. When I get home im so exhausted that im fighting myself to not collapse on the couch to sleep so i can spend time with my wife before i have to do it all over again. ive asked to do a hybrid model like one day out of the week to help but they refused but two employees are currently doing this. my home setup allows me to work remote as my previous job allowed me to do so. im at a loss. i kinda want to leave this job to go somewhere the hybrid model is there or remote but the salary is decent. I would hire a companion care but it has faired out for us or cost way too much. i even thought to go back to my previous employer as they understood and gave me time to tend to her but the salary wasn't enough and I'm the sole provider of our household. This is probably going on too long but i say that i despise ALS for taking my wife's life away slowly and wish people would be more understanding or empathic especially in the work force.