Thank you. I just felt that, now that he is able to use the voice that he struggled to regain, it was important for me to not “Are you sure” his every move. Throughout this journey, when he was unconscious in ICU for 3 1/2 weeks, I was Dan’s voice. To his family, on my Facebook page in my daily “love messages/updates”, to my family. Once he started " whisper talking" post extubation, I always asked him to “honey, I didn’t catch that, so you are on Mars, want to tell me about it?” To the time he answered the phone, “This is Daniel Leinad, CSI”. Mind you, I did respond, laughing, " Honey, come on, I know it’s you…" until I realized he wasn’t playing around. In his reality he was solving the crime of the car accident that caused him to be in the hospital. I followed his reality. Sadly,after that call ended, with our regular “I love yous” he had a breakdown where he had to be put into restraints because he was “trying to find my body in the wreckage.” I sobbed after the morning nurse told me this. But it didn’t stop me from always advocating for him when he was unable to. It caused much strife with his Mother, who had her own agenda, not wanting to respect the wishes that I knew he’d want/not want. That didn’t stop my stubborn Irish Italian a$$! The more cognizant he became, the more I had to discern between what were hallucinations of my mother’s husband sitting in his room staring at him creepily (he’s a very bad man whom I’d never allow near any of us with a 10 foot pole…don’t f with this Momma Bear) and not tell him he didn’t see/hear certain things, but to ride his wave with him in tandem. When he finally was able to understand things, he had a lot of questions. Luckily the OCD writer in me was able to draw from my notes and letters and texts to him to fill in gaps. I didn’t do it all at once, but bit by bit, as he was able to process the information. The other day he was talking with a nice woman who was helping him with his SSI application. She needed Dr names but the discharge summary from the hospital was laacking and he couldn’t access his Patient Portal at that time. So I grabbed my notebooks which were filled with dates, procedures, Drs, nurses (day and night, for my Thank You cards), medical terms that were explained to me, Case Managers…I was able to provide over 10 medical team members for her to look up, both helping her and giving her hours of nonstop “fun”. In conclusion, since Dan has been home, I have watched him intently go up our stairs with his cane once, watched him get in the shower to use the shower chair we chose (and stayed in the bedroom until he was done), once and the rest, I’ve waited for his " post new activity update" once he got comfortable in his spot on the couch. He has always been extremely independant and used to getting up and doing what he wants when he wants. While in the hospital, I had offered to help him shave, knowing how much he hates facial hair, and he was insistant on getting up, standing in front of the mirror to do it like he always did. I did my best to empower without deflating him and responded “Honey, right now you don’t have the strength in your legs and core to allow you to stand. How about I ask a nurse to get some towels so we can prop you up and you can do it yourself in bed. He wasn’t having that. I followed his lead because he was adamant and in our 15 years together I learned that Dan does his things his way. I have always respected that and though circumstances changed, my respect did not. He hated the alarm bed in rehab, not being able to use the bathroom on his own or being able to shower every day (he sometimes had to go days before showering became part of his therapy), so, being home all I needed was to watch him stretch his broken but mending wings at work, and him navigating his routine, adjusting lots, just once with my loving, caring (never motherly) " If you need anything, just call me,” knowing that he’d work it out for himself first.
Oh my gosh! I wrote a novel. You can tell that I’m still in processing and sharing newbie mode, oversharing wherever I can. My apologies for going so off topic. Your comment struck a cord in my heart that resonated this whole time. Giving our loved one autonomy and respect. My beloved husband is no “helpless child” as his Mother has practically referred to him as. He’ s a beautiful, vibrant, productive, ABLE and valuable man. I tell him this all the time when he gets down on himself, saying he’s “stupid” and berates his brain. I tell him that it’ s going to take time until he can do things he wants more independantly, but it will happen and that I’m not leaving his side (well, except when he needs to go to the bathroom…oh my gosh, I just used humor for the first time in months!)
OK, I’m going to stop… Thank you if you’ve made it this far or if you need to move this soliloquy to. another more appropriate section.
. I offered to try to be Ms. Vidal Sassooness and do the other side, giving him a mohawk of sorts. His timing for sure.