My husband went in for cervical laminectomy and fusion surgery on 5/14/2024. He was perfectly fine and working 10 hours a day up until the day of surgery. Unfortunately, he was injured in the procedure, resulting in an incomplete spinal cord injury.
Our lives have imploded and our world has been turned upside down. We were in 5 different facilities over 6 months. He is bed-bound and can’t walk or use his arms properly. He has neurogenic bowels and bladder, as well as orthostatic hypotension and autonomic disreflexia. While in the first hospital, he suffered a severe pulmonary embolism and required a thrombectomy to save his life. He was put on blood thinners for 7 months and was just hospitalized for hemorrhagic shock and internal bleeding. The blood thinners were the culprit.
We have spent over $60,000 on equipment and had to have a handicap bathroom installed. I am his primary caregiver. I have seen, heard, and done things I never thought I would. I am doing wound care, pain care, nursing duties, and everything else required to care for him. I have no time for anything else. I am exhausted. I am angry and scared. I have to stay strong mentally, physically, and emotionally for his sake.
Throughout this ordeal, we have first-hand witnessed the awful healthcare system we have. Advocating for his care and treatment has been an epic battle. Doctors are in it for the money and don’t really care, like they should, about patients.
Home healthcare is the only saving grace for us. Unfortunately, they are disorganized and constantly changing, but I will NEVER put him in a SAR (skilled nursing facility) again! Stay away from those places. There is no “care” in these facilities. Just 4 walls where there are beds to lay in and be ignored. My husband now has a stage 4 bedsore due to nursing negligence.
What advice or tips would you give to other caregivers?
Stay healthy. Be very careful when choosing a physician or agreeing to surgery, do your research and don’t do something just because one provider tells you to do. Advocate for your person and do not be bullied.
What is the hardest thing about being a caregiver?
Sheer exhaustion
What is the most rewarding thing about being a caregiver?
Knowing my husband is getting my attention and care and is recovery.
