We’ve all seen and heard by now the advice to be kind, because everyone we meet is fighting a battle we know nothing about.
I debated with myself about sharing this section publicly because, while mental health is being discussed more openly now, there is still a stigma surrounding it and so many people don’t understand. But without this huge component, our story is incomplete. After spending almost a year in a brain injury rehab hospital that is attached to a psychiatric facility, I have seen so much pain and suffering that is just part of what I know, the people are part of my memories. Anyone who hasn’t suffered some kind of mental illness or disorder in their life should be grateful they have been spared, and never judgmental of those who have had to face a journey they would never have volunteered to take. I don’t think physical suffering can ever come close to mental anguish; I know for myself it doesn’t.
I call this one component of Pat’s many challenges the bi-polar “monster” because when it rears its ugly head, lives are devastated. Bi-polar disorder is a chemical imbalance in the brain, a “physical illness” that affects mental health. It lurks behind the faces of wonderful, loving, sensitive, responsible, intelligent, hard working, and even famous people, always waiting there to throw them into deep waters with no compass. They themselves are not the monsters; the disorder is beyond their control and often beyond anyone else’s control, and all they can hope for is that with the proper medication, it can be kept at bay most of the time so they can live their lives as the special people that they are, enjoying life as everyone else does. Sometimes, if medications work well enough, others never know who they are and even close friends never witness symptoms so are surprised to learn the truth when told.
I believe that this part of Pat played a large role in making him more compassionate towards others, more understanding of each person’s journey, setbacks, struggles. He was less judgmental than most people and more ready to excuse, forgive, and support people who needed help. I know he made me a better person.
Pat was bi-polar since childhood and in modern terms he was considered bi-polar 1, which means he didn’t manifest depression, just mania. After a long fight to stay above water amidst the stigma and lack of understanding or knowledge about conditions like his in his youth, he was finally successfully diagnosed and treated with lithium years before I met him. In all the time we were together before the accident, I never experienced anything of his condition. He managed it seriously and responsibly, always kept track of his own medication, faithfully got blood work done, and had no issues for over thirty years. When we were first married, I remember reading somewhere that only a small percentage of bi-polar patients are successfully treated with lithium and, of those, most still experience symptoms and have cyclic episodes. Pat was one of the small group of lucky ones who did not. I would later learn that he was unusually lucky all that time and that I could not expect it to ever be like that again after his brain injury.
There had been no lithium since the accident, first because of the serious kidney failure in the I.C.U. which followed long term damage that had been slowly creeping up the few years prior, and later because brain injury recovery requires everything in the brain to be firing at full force and any drugs affecting his psyche would have interfered with that. He wasn’t “awake enough” yet after coming out of the coma to assess those things so we were advised that it was best to wait until we had more clarity about what we were dealing with regarding his brain injury and, if necessary down the road, treatment of the bi-polar condition would be considered.
I remember the summer of 2012 – just months before the accident – when his lithium level went toxic because he was no longer metabolizing it as quickly, so the dosage was drastically lowered. I was concerned because I didn’t know what to look for in him that might indicate a problem if the levels got too low while the dosage was corrected. His doctor at the time assured me there would be no doubt that something was wrong if it ever happened. Now, with the brain injury, I was wondering how we would ever know, since having a brain injury had already changed everything we knew of his health and behaviour.
When the time came, there was indeed no doubt. It happened in September shortly after we got to Ponoka, and it was very obvious, even with his brain injury, that he was going manic. His doctor reacted immediately, using one of the alternates to lithium in order to avoid affecting his kidneys any further; knowing the damage his kidneys had already endured, they were avoiding the lithium. Within days he was settled and for about six weeks, he was stabilized and continuing to make physical and cognitive gains. It looked like the new medication was going to work. Until it didn’t.
Just at the time that my dad died and I was leaving for home, they had to begin new medication trials with Pat. I was advised by his doctor and the social worker to follow through on my plans because they would take care of things there, they would be in touch with me, and hopefully in a couple of days we would see improvement. I had no doubt about their quality of care or their diligence. I knew his doctor was in consultation with an experienced psychiatrist in managing Pat’s care and that they were making decisions together and with caution.
By the time I returned a few days later, I witnessed what I didn’t yet know was the beginning of the end result that I had tried so hard to fight against, the beginning of what would eventually keep him from ever coming home. The bi-polar challenge would be the final punctuation mark on the story of a battle we could not win.
His manic episode was so difficult that he was sedated for weeks on end as one medication after another was tried and ruled out as a failure. His mental health necessarily became the focus over and above his physical therapies, which he was unable to properly participate in during this time. As a result, he lost most of the physical gains he had made and wasn’t remembering things he had been taught.
As one medication was introduced and another gradually decreased, it would often appear that there was improvement of some kind – for a day or two, or three, or even a week – just enough to make me hopeful and then there would be more bad news. Each time I would try to find hope and push away the nagging feeling that nothing was going to work. I began to pray that there would be an obvious indication right away if something wasn’t going to work because I could no longer handle having my hopes lifted only to be squashed over and over again.
This went on until the end of January of 2014, when his condition was finally “managed” by a drug that basically left him sitting in his wheelchair, drooling and groggy all day, unable to interact effectively with anyone. Although he did still know me and other people around him, he was so out of it that he could barely sit up straight or keep his head up. We had exhausted the list of alternates. After discussing the situation with our children and wanting to try everything we could to help him, I approached his doctor about trying the lithium.
It’s one thing to have family conversations when everyone is fine, and talk openly about what to do if this or that were to happen to one of us. It’s far away, it’s probably not going to happen, and it all makes sense from a healthy happy life perspective. It’s quite another to be right there in the moment, actually being the decision maker for a mentally incapacitated loved one, knowing that the choice you make will have negative repercussions down the road, secondary side effects you do not want, and also knowing that what you are choosing is their only good chance for any possible quality of life.
The doctor listened and was practical and realistic with me about what I was asking, but he really heard me in my concern that if we didn’t do this, I would never know if it might have worked, if it might have changed something and I didn’t even try. I was willing to sign papers to relieve him of responsibility for my decision. I respected that, as a doctor, he had to be sure he could justify using a drug that would potentially and probably cause Pat secondary harm, but he understood why I wanted it to be introduced there, in the safety of a facility well experienced in brain injury and with access to ongoing psychiatric advice and consultation right next door. It would be safer, and then we would know. And if it didn’t work, then at least we had tried. He knew I understood what I was choosing and he agreed by the beginning of February, when nothing had changed, that it was time.
Within only a couple of weeks there was a noticeable change and from there Pat became brighter and more alert, and we knew the lithium was working. His doctor called it Pat’s miracle drug. He was able to resume his therapies and responded well, but was never to regain his previous strength or progress. The lithium managed his condition, but necessarily suppressed certain brain activity that was also necessary for successful rehabilitation and recovery. We would never again see the strength or cognitive awareness he had shown at the beginning of his time in Ponoka. We had lost the fight to get him home.
There was some discussion that in retrospect, if there had been a crystal ball, the doctor could have tried the lithium right away and things might have ended differently. But none of us knew whether or not it would still work with his injured brain, and had we gone with it and then had problems after being discharged from there, we would have had to go through all the med trials in a much less secure environment, void of the experience of the brain injury doctor, staff, and psychiatrist, and it would have been another kind of nightmare. We can always look back and wonder “what if….”, but they made the best decisions they could make with what they knew at the time, and I accepted that because I trusted them. I have no regrets. There is no way to know what our end result might have been, or what other difficult decisions could have arisen from other choices made too soon.
I had hoped in the early months after Pat’s accident – perhaps naively – that with his injured brain the bi-polar disorder might never come back, and that somehow in the midst of all that he would suffer for the rest of his life from the brain injury alone he might be spared that additional blow. But he wasn’t; I wasn’t. And eventually, watching his mental suffering became as painful for me as watching him deal with his physical limitations, if not moreso.