No Second Guessing Allowed

Photo by Irina Iriser on

I recently posted a reply in an online grief group to a member who lost his wife at about the same time I lost my husband, just 10 short/long months ago. In the post, the group member had talked about he and his son having to make the gut-wrenching decision of taking his wife off a ventilator. Ever since then he has been second guessing the decision. There were many replies from people assuring him that they had been down the Pathway of Regret as well. All of them urged him to turn around and go no further, as it would only make him feel worse. Seeing all the responses made me realize yet again, just how many of us who have lost a loved one, particularly our spouse, find ourselves lost on this same path, too. And because of that, here is what I posted:

I know exactly where you are coming from, as I have been down that pathway many times myself. In fact, I seem to get lost and find myself walking down it repeatedly sometimes, much to my dismay. I am in about the same place in my grief journey as you are with yours, and, while it has gotten easier, waves of grief still overtake me sometimes and try to drag me back to that dead-end path.

My husband fought a valiant battle with Parkinson’s disease for 13 of the 27 years we were married. He was a Lutheran pastor, and, while he was not ready to die, he was not afraid of death either. For the first seven years after his diagnosis, we were a team, upbeat and ready to do everything we could to do the only thing there was to be done, and that was to deal with the symptoms and delay the disease for as long as possible. In the next four years my role changed to more of a care partner/caregiver, and for the last three years I was pretty much his full-time caregiver. Living through COVID and trying to keep him safe and healthy was one of the most stressful things God has ever asked me to do. And I must admit that towards the end there were times when I wasn’t sure if I could continue doing it. I know that the more tired and frustrated I got, the shorter my fuse was. And the worse he got, the more scared I got and tried even harder to make the by now rapid decline stop, or at least slowdown. And, as if the Parkinson’s was not enough, over the last 5 years he had, as many people do in the final stage of the disease, developed Lewy Body Dementia. This, coupled with the Pandemic, was a game changer — in the wrong direction. I am a retired educator, and learning has always been my thing. So, the more his disease progressed, the more I learned about ways to cope and to try and delay its worsening. Looking back now, I can see that while I realized that I couldn’t “fix” it and make it go away, I think I believed that if I just tried hard enough, I could cheat, perhaps even thwart Parkinson’s. But I was wrong.

Because of COVID I had not even considered taking him to an ER unless I had no other choice. He had started aspirating and I knew that if he developed COVID his lungs would give out and he would not survive. But, on March 19th, when he took the last of many falls over the past three months, the day came when, as it turned out, there was no choice but to call an ambulance and send him to the ER. There, rolling around in pain on the bedroom floor was the man who never complained, who always stayed positive, moaning, and saying, “Oh, God! It hurts! Help me! Someone please help me!” And I lost what little cool I had left, along with my practiced composure, panicked, and sent him to the ER. The long and the short of the next 12 days was that, try as they might, the doctors could not find any one cause for his pain, nor were they able to ever abate it completely while keeping him alert. When he was awake, he didn’t want to sit up to eat, or take walks with his walker, both of which he needed to do to keep from aspirating and getting aspiration pneumonia. Eventually, we ran out of time that insurance would pay for him to stay in the hospital. I asked if he wanted to come home and have his physical therapists come to the house or go to skilled care and have his therapy there. I asked this twice, on two separate occasions, and both times he chose the rehab option. I knew that meant he was serious about getting better. That he had not given up. That he wanted to live.

So, that is what we did. But, once again, COVID got in the way and I could only be with him for an hour a day, and not at all on the weekend, both of which nearly killed me. He entered skilled care on a Thursday. Over the weekend, one thing led to another, and he stopped eating and taking his medications. On Monday, he came home on Hospice with a fever of 102 and an oxygen level of 81, and I knew then that end had, indeed, begun. He died two days later.

I say all of this because I want you to know that many of my regrets and second thoughts are the same as yours. I ask myself: “What if I had just kept him home instead of taking him to the ER? Why did I not do that? Why did I follow the rules of the hospital and rehab facility and only stay as long as I was allowed to? Why didn’t I just plain refuse to leave?” And the list goes on and on. Over the last 10 months since his death my mind has tried to convince me many times that doing even one of these “What ifs” might have saved him. But I have learned not to follow grief when it takes me there. It’s a dead-end road that only leads to the Cliff of Despair, and there is no way that I am going to be dragged there and pushed over. I was lucky. I spent the last night of his life with him. I read him Bible verses and sang hymns. I told him over and over how very much I loved him, and how sorry I was that I had done/said some things I shouldn’t have, and that I realized that there was so much that I should done or said as well. I held his hand as he took his last breath and was freed from all his struggles and pain. I ran my fingers through his hair and kissed his forehead one last time and said, “I will love you forever” . . . and then watched his lifeless body leave the house on a gurney.

And those wonderful things we were able to share at the end of his life were a privilege denied to many. That is what I try to remember when I start down the “What if” road. Please, don’t second guess yourself. It only causes more heartache. What I would like you to remember are these four things that I learned from an online grief class I participated in shortly after my husband died. They have turned into my guides for making it through this dark place.

1.) You cannot blame yourself for not making decisions based on information gained after the fact. That is information you didn’t know at the time the decision was made.

2.) The answer to the “What ifs” are not the cause of the tragedy.

3.) Despite our best efforts, people still die.

4.) And finally: “Somethings cannot be fixed. They can only be carried.” And my friend, grief is one of those.

“Grief is love’s souvenir. It’s our proof that we once loved. Grief is the receipt we wave in the air that says to the world: Look! Love was once mine. I love well. Here is my proof that I paid the price.”

Glennon Doyle

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