Yvette from North Carolina
I care for my husband of 26 years who had a severe hemorrhagic stroke of the left side of his brain two years ago, causing damage to his communication center and inability to move his right side. He was admitted to the hospital and then lived in hospital between from May - Sept 2015, then to an assisted living facility, (the best in Durham) until December 2015. While in the hospital, he had a tracheotomy, VP shunt and PEG tube placed. He became able to breath on his own, eventually we took out the trach and then the PEG tube after release from the assisted living facility. He has been home since December and I as caregiver and wife learned to manage household staff, medical appointments, lawn care, repairs and finances. I work full time and pay for ladies to come in 7 am - 6:30 pm on weekdays. I care for Walt alone on weekends and holidays. Although he has aphasia, Walter communicates through hand gestures and a a few monosyllabic words he has been able to pronounce. He has learned to say my name and names of his other caregivers. The most beautiful thing is seeing Walt progress ever so slowly but surely. Doctors said he would plateau but to this day we see small improvements. I personally feel a huge sense of responsibility because who would do this if not me? Had I not been there to catch mis-passing of meds and omission of night feeds at the nursing home or there to alert the neurologists of the cerebro-spinal fluid leaking from his incision early on or there to advocate for his getting changed more frequently to avoid raw skin at the assisted living, or there to catch it when he pulled out his trach while hallucinating, he may not have made it.
The hardest thing has been the financial loss out of our household. We are blessed that Walt has saved so much during his career. Walt's illness was so sudden, we had not put in place power of attorney. I petitioned the court for guardianship, paying fees to file, for a sheriff to come see him bedridden in the hospital to witness that Walt was truly incapacitated, for court costs and ultimately to be bonded. At the same time I use over $1,000 from my paycheck monthly to cover what Walt's retirement and social security disability checks do not cover. That figure was once as high as my entire paycheck when he was in the nursing home. Insurance would not pay for it and he did not qualify for Medicare yet. I still have to present to the Clerk of the Court an annual accounting of how I spend my husband's monthly income, so they can ensure I am not squandering his funds. We still pay the annual fee for filing the financial accounting. When I consulted with an elder care counselor who charged $75 per hour, her advice was to divorce my husband and leave him in the nursing home to allow him to qualify for public assistance. I refused. Though communication is challenging, I do so love my husband and am committed to care for him while he enjoys the rest of his days. My worries are what if something were to happen to me. Who will manage his meds and take him to appointments? I cannot afford to get sick.