Amazingly, the short break I intended to take back in October to recharge for the new year turned into a five-month hiatus. Now I’m back, not so recharged, but determined to blog on, and anxious about embarking on this restart with the difficult topic of death, or, to be specific. the question of what do you do when your spouse, or the person you are caring for, express the desire to die.
First, let me remind you that I am neither a doctor. lawyer or psychologist, and that the opinions and suggestions expressed here are singularly my own. For this particular circumstance, I urge you to seek professional help — even call a suicide prevention hotline if you must, as expressions like this should always be taken seriously. That said, given my wife’s physical limitations, there’s little chance of her being able to act on her desire on her own, thus giving me time to ponder the topic.
J is not a person prone to depression. She used to wake up early every day with a smile on her face, energy in her step, and optimism about the day. That’s not to say she didn’t have bouts of depression, as we all do, but she was generally a positive person. Since the stroke, her demeanor has been mostly flat with only an occasional shortlived smile, laugh or outburst of anger. She hasn’t been able to describe how she normally feels beyond just saying, “I don’t know.”
The depression became evident around the first anniversary of her stroke when she appeared to “suddenly” recognize the severity of her disability. It became more severe a day or so after she enjoyed the company of family or friends or a special event. Her 50th birthday party bash, 13 months after the stroke, prompted the first time I heard, “Why can’t I die?”, a few days after the party. I was caught by surprise, and I know my response was inadequate and unpolished — simply, I explained to her that she was deeply loved by me, our daughter, her family, and friends, etc., and that she had made tremendous progress since the stroke, and the future was bright as long as she stayed motivated and worked hard at therapy, and blah, blah, blah. All of this was true and heartfelt, and may have reassured her a bit, but, by no means, did it put the subject to rest — excuse the pun.
Over the course of the following year, the topic came up several times again, often after her being reminded of her current limited state. As her progress slowed, which was expected, and she had a particularly bad month set off by a urinary tract infection, her despair became deeper, her energy waned, she lost weight, and she was losing hope. (Urinary tract infections are a nightmare, so much so that I will devote a post to them at a later date.) With the help of her psychologist, neurologist and physiatrist, we attacked the problem with a slight modification in her medications — not the anti-depressant she had been on since leaving the hospital — hoping to increase her energy level. That change coupled with a lot of talking got her through this dark period, but again, we all knew this would be a continuing problem for her, and for me.
J and I didn’t have any living wills or medical directives but we had talked about how we would want conditions to be treated if needed. When I learned of J’s stroke and spoke to the Emergency Room neurosurgeon, steps had already been taken to improve her chances of survival, before I had an opportunity to assess the situation. In hindsight, knowing what she has endured since the stroke, I tend to think that if I had understood the severity of the injury right after the event, I would have just let her go, but I’m not certain I could have followed through with it. There were a few instances, such as weaning her off the respirator, or when the shunt was implanted, that I might have been faced with that decision again, and in those instances, I think I would have found the strength to let her go if the alternative meant ongoing life support or other situations we had discussed previously, but she passed those trials, and no one knew for sure what the future would hold as far as the extent of her recovery. While the medical team and I were initially hopeful, I was reminded by them repeatedly that it would take 18 to 24 months to fully understand the extent of the damage and the potential for repair.
So here we sit 25 months later, and J asks me, “Why can’t I die?”. I suppose the factual answer is “because society doesn’t allow it” … despite all of her impediments, I think she knows that, so the question she may actually be asking is, “What do I have to live for?”, and that question is much easier to answer, in my opinion. As limited and frustrated as she is, she can still enjoy life, find new meaning and satisfaction, and participate in the rearing of our daughter, if she has the will to do it. I keep feeling that if she can only regain some of her independence, be it walking or eating or speaking, then she is truly on the path to recovery, and I’m determined to help her get there with continued therapy and encouragement, seeking out new technologies that she might benefit from, and helping her brain to relearn what it has lost.
Ironically, I’m the one who has battled severe depression throughout my life, and it follows me like a shadow now through all of this, but I fight it back minute by minute in order to keep J and our daughter safe and happy. The worst time for me is after everyone has gone to sleep and I sit down for some “me” time — I think the pressure of the day just overwhelms me and drives unhealthy behaviors like binge eating and not getting enough sleep. I’m cognizant of this and working to control with the help of therapists, family, and friends. Interestingly, when I start to lose hope, I think back to the 1980’s Sandra Boynton poster, “Don’t let the turkeys get you down!” I’m not sure if she originated this phrase that is supposedly based on Illegitimi non carborundum, a mock-Latin aphorism possibly read as “Don’t let the bastards grind you down”. I simply picture the image and it makes me laugh, and laughter is truly the best medicine. I hope you laugh too!