Pam, my wife of 29 years is finally giving in to NF2. She was diagnosed in 2001. Over the years she has had numerous brain and spinal surgeries to remove tumors from this horrible disease. She lost her hearing to acoustic neuromas. Half of her beautiful face was paralyzed due to one of her first surgeries to remove one. She was then paralyzed by the removal of a spinal tumor. Being the warrior she is she regained use of her legs after months (to dance at her sister's wedding), but her cord got tethered before they fused her neck. Her sensations were unbearable vibrations which could only be calmed by gabapentin (huge dose around 3600mgs per day). She has had multiple surgeries over the years for both brain and spinal tumors. Even when the surgeries were successful to remove the offending tumors she seemed to lose something (usually a new nerve sensation loss or neuropathy). Pam's most recent surgery was January of 2024, which resulted in her being wheelchair bound. We thought she would once again beat paralysis, but this time the feeling in her feet had finally disappeared. Being the tough woman that she is (she has put up with me for 29 years) she adapted and was handling all of her transfers by herself. Over the last 2 years, her strength started making those more of a struggle, but she persevered. Since becoming wheelchair bound,she began losing functionality of her hands as they wanted to claw or club. She can still use her right hand to grip silverware, but can no longer write (Pam is left handed and loved to journal or make lists for me). Her bladder started losing consistency and in June she got an indwelling cath. For two weeks that was a godsend. That alleviated 2 to 3 nightly transfers to the bedside commode and she was able to get a full night's sleep for the first time in many months. In July she started having splitting headaches. On July 9th her foley was exchanged and samples of the urine showed a UTI and we started an antibiotic and antispasmodic. On July 10th I got home from work to find she had been nauseous all day and had dry heaves and vomiting (vomiting was a red flag for her). She decided that she would wait til Saturday to go to the hospital, just in case it was something she ate. Throughout the night she vomited several times and was becoming confused. I took her to the ER, thinking that her UTI was serious. The local ER did a cat scan and the attending physician became alarmed so she was transported to another hospital with a robust neurology department. Pam's tumors had caused a midline shift in her brain due to swelling. She spent a week (July 11-20) in a hospital 45 minutes from home. A heavy regimen of steroids for the swelling and round of antibiotics for the UTI, her pain and confusion receded. Once she learned that tumor activity was imminent, she decided that enough was enough. Her body and mind are just too weak to undergo another surgery and recovery. Pam decided that hospice is what she wants. She is at peace with her Lord and her decision. The conversations with our three twenty-something kids were so hard. So we get home and enrolled in hospice. The whole crew from the HSHS Illinois Home Care are golden. All of her medical needs and supplies will be covered. I am her caregiver and she now requires basically 24/7 care. I dress her in the morning and transfer her to the living room because she cannot transfer herself anymore. I give her meds because her dexterity can no longer pick up small tablets. I make her meals and prepare her with a lap towel and neck bib. Currently she can feed herself with her right hand. I am blessed that I have been with HSHS for 29 years and have been approved for the full FMLA 12 weeks. Our need came to light when we found out that unum does not consider NF2 as a critical illness, so now that my PTO has been exhausted, my lost wages for Pam's care will not be covered. My position is guaranteed until October, but her ssdi will be our only income. That will not cover mortgage and power. I need to focus on Pam and not worry (as far as she knows) about the finances.

Pam has always been fiercely independent (that's one of the reasons I fell in love with her). This horrible disease has completely robbed her of any independence and she needs her husband to be her arms, legs, and ears. Pam has always been a prayer warrior and I wish my faith was half as strong.