In early September of last year, I had to make a tough choice of whether I should enroll my husband in a Neurorestorative program. I had to evaluate if he was safe to come home and if it was even the right time for his development to be home. I had to judge if I had the resources to take care of him at home with the level of care and attention that is required. There are no second choices. No missteps. There is no margin for error anymore.
He was performing well at the Rehabilitation Institute of Chicago, and I wanted a few more months at RIC. At the end of our journey at RIC, he didn’t require a lift to be moved; he could walk and stand with maximum assistance. He got his voice back; but has severe Aphasia. He could eat and didn’t have to rely on the gastric tube for liquid food. Big progress.
But time at RIC was drawing close to an end and I had to make a decision between home and an assisted care facility. Despite the big progress he made at RIC, he was still agitated, non cooperative and extremely confused. Getting him to outpatient therapy from home could be impossible if he was screaming and pushing away. I was recovering from injury myself and I needed to be stronger. I also had to start working and couldn’t be home with him 24/7. All factors considered, the choice was made for me. I had to arm myself with knowledge, resources and experience to take care of him with competence.
So we moved to Neuro Restorative.
I felt terrible leaving him at a house, with none of us allowed to stay over. We had been by his side all along. Not one day, not an hour away from him. I think somewhere in his mind he thought he was getting discharged from RIC to go home. He was smiling. Seemed relieved. But the moment he saw the ambulance picking him up, and not the car we were going in, his face fell. Of disappointment. sadness. helplessness. You never forget that face. Day 1 at the facility was horrible. He clearly didn’t want to be there. He vocalized it. “Go back”. “Go with you”. Pushed from going into the room. Hated it. And I hated it with him. I felt inadequate. To not be able to take him home. We take care of our own! But at that point, with the resources we had, it was the best place for his recovery. This was me taking care of him, in a way. As rational as the decision was, I just could never forgive myself.
Prior to moving, I made sure I knew what we were getting into. He would get 24/7 attention, have a disciplined schedule and therapy in house as well. But I would have to drive 2 hours to see him each day; or visit over weekends. There were many benefits and just as many drawbacks.
We stayed at Neuro Restorative for four months. I would visit over weekends; drive down Thursday night and stay till Sunday night. I couch-surfed a lot; gracious friends helped me through this time. I cannot thank you enough; Shruti and Arnab.
Make a decision of what is right for you and your loved one. Get your pros and cons together. Understand what the end goal is and what the timeline should be. I had excel files and emails sent to everyone in the family, to get their opinion. I had to be comfortably; even if slightly, with the idea of him moving to a house that wasn’t ours. I wanted him home so badly and have our life back, but I had to learn that it takes time. Time that we cannot control. But an outcome that I can shape a little.
Understand what is important to you and what you can trade off. No one can make this call for you. No one knows you or your survivor better than you. Here are some of the pros and cons that I ran through; create your own.
Traumatic Brain Injury survivors are delicate. They need a lot of care, attention and more importantly patience. If at any point, you feel that you are not ready to care for them at home, then give yourself the time to learn. You will burn out. So take the much needed rest. If you are rested, you are a better caregiver. Never be complacent. Never think that the facility will be forever. We don’t have the luxury of getting used to things, because we have to push harder.
So strive for better. Strive to get back to normal.