Ambiguous Loss
I miss my husband. Even when I’m sitting right next to him, I miss him, and everything we were before his TBI. The life we had built was beautiful. We considered ourselves to be exceedingly blessed with two wonderful children, a home we loved, a great community, extended family that we truly enjoyed being with, and adventures to pursue. We talked often of growing old together and even had plans to turn our first floor den into our bedroom when it got too difficult to climb the stairs at night.
I did turn the den into a bedroom for David when I brought him home from the rehab hospital. He came home 115 days after the June, 2011 horrific car accident that resulted in a severe traumatic brain injury. I spent weeks mentally preparing to be his full-time caregiver. I was by his side nearly every day, all day, as my mother had moved in with us to take care of my two children. I was ready! Not so much. The five months that David lived at home were undoubtedly the most difficult days of my life.
There’s a natural arc that occurs after someone sustains a significant injury. The first days are horrible as family members try to make sense of what is happening and attempt to stay positive while their loved ones life hangs in the balance. That is followed by a period of hopefulness - you’ve gotten past the critical first three days, your beloved is stabilizing, and eventually he’ll wake up and you can all go home and live happily ever after. Maybe, maybe not. We were told that 80% of TBI recovery typically occurs within the first six months; with the other 20% happening within the first two years. Results vary from case to case as no two brain injuries are ever the same. David came home close to the four month mark with significant physical and cognitive impairments, but I was still hopeful - we had time on our side.
As we reached Christmas, and then Easter, with no real improvements I could feel that we were on the downside of that hopeful arc. David had limited movement in his right hand/arm and could turn his head from side to side, however the rest of his body was not functioning. I was getting up two to three times a night to reposition him and/or change him so that we could avoid bed sores. His paranoia was high and he called out to me several times each night. Usually he thought the light on the smoke detector was a bomb about to explode. Or he thought the blinds on the window behind his hospital bed were going to attack him. He was starting to show improvements in cognition, although we had numerous days when I was definitely not his wife, and we were most definitely not in our home.
In late spring of 2012 I was hospitalized with a severe case of cellulitis. My left leg looked like leprosy with oozing sores, redness, and decidedly full of infection. I stood at the counter in the emergency room making numerous phone calls so that friends and family could step in and care for our children and my husband so that the medical personnel could care for me. It was a breaking point and I had to come to terms with the fact that David would want me to put my energies into raising our children. They were getting the (very) short end of the stick and something needed to change. I was tired all the time and was on the verge of being ineffectual to anyone. This wasn’t working. That hopeful arc was gone.
“I was tired all the time and on the verge of being ineffectual to anyone. This wasn’t working. ”
David went to a brain injury treatment facility in early May. It was super expensive but I looked at it as something that we needed to try. He had his own room, physical therapy, group events, and beautiful grounds where I could get him outside and push his wheelchair around the campus. And he cried, hard, every day. Despite the wonderful services offered, the atmosphere was volatile. Many of the residents were able-bodied yet working through the intricacies of cognitive impairment. Honestly, I’ve never heard the f-word used in as many different ways in my lifetime. The negativity and separation from his family took a toll on David and I was once again searching for options.
Fairview Manor became David’s home in late September, 2012 and he has lived there for eight years. David is a helper. He spent 34 years as a volunteer firefighter with his local department before his injuries occurred (he was 50 when he was injured). I think the combination of a brighter, cheerier atmosphere and having older people around that he could encourage brought about an abrupt change in my husband. He was no longer crying every day. He started to eat better and even learned to self feed. He learned how to laugh again. And I regained some of the hope that had nearly disappeared completely. It wasn’t the same hope that he would fully recover, but rather a hope that he could experience peace and enjoy life again.
Is David happy today? Yes and no. He is exasperated that his legs don’t work. He wants so badly to walk and drive and do things for others. He wants to live with me. I want him to live with me too. Yet I know that his needs are too significant for me to be able to take care of him. It’s a tough existence. I’ve said for years now that my job is to make him laugh or smile every day. I work hard at that. Our current pandemic situation has set him back some. As with so many other nursing home residents, he is lonely and stir-crazy. We were blessed to get a wheelchair van in 2012 and have used it extensively to take David out, often. We haven’t been able to do that in over six months and so he is noticeably depressed right now. I go to his window and call him on his phone nearly every day. And we have the same conversation that always starts with him saying, “Get me out of here.” It’s sad and hard and tiresome. I miss my pre-injury husband and my pre-COVID injured husband.
Ambiguous loss is a loss that isn’t completed. It’s sometimes referred to as grieving for someone who isn’t gone. Everyone in the TBI world experiences some degree of ambiguous loss, as nearly every victim is a different version of their pre-injury self.
What steps can we take to live with this prolonged sense of grief? For me, it has been a combination of relying on faith, family and friends, as well as staying connected with others in similar situations. I’m a big fan of counseling and encourage everyone to find a professional to help them through these feelings of grief. Naturally, the usual recommendations for well-being are necessary too - get plenty of rest, eat wholesome, healthy foods, exercise on a regular basis, and take time out for yourself. These aren’t easy steps to follow, so also remember to give yourself grace. If you mess up one day, or for a whole week, month, whatever, start the next day anew and resolve to try again.
The other thing that helps me, and perhaps the most important, is to remind myself that my husband needs me. If I let my grief steal all of my joy then what will I have to give to him? The changes and losses that I’ve experienced are only a fraction of what he’s had to endure. I want his days here on Earth to continue in hope and love and a semblance of contentment. He deserves that. Everyone deserves that.
“...my husband needs me. If I let my grief steal all of my joy then what will I have to give him?”
God bless you on your journey.