Life doesn’t come with a manual, and neither does caring for a loved one who is dying. And yet so many caregivers I’ve met follow such a similar pattern of behavior, it would almost seem that instructions had been written for them to follow.
It goes a little something like this:
- tirelessly and selflessly care for a loved one for months and years on end
- put aside all needs and wants, plans and prospects
- feel tired and overwhelmed, yet grateful at the same time
- immediately replace occasional feelings of resentment, with guilt
- do this for as long as needed, until it is no longer needed
- use newfound abundance of time following loved one’s loss to second guess and question every choice made while caring for loved one; cycle with guilt and regret indefinitely
Sound familiar? It’s human nature of course, to doubt and second guess ourselves when big things happen in our life, and to think maybe we could have done more, or perhaps we should have done something different.
But caregivers seem to do this at a whole different level. Maybe it’s because the choices they make are so big. Perhaps it’s because their end result (the loss of their loved one) is always a bad one.
What I do know is that hindsight is 20/20. Cliched maybe, but true. And the problem is that without realizing it, we take what we know now and apply it to what happened then.
I’ll give an example. A daughter who had spent weeks by her mother’s side in the hospital finally relents to the suggestions family and staff have been making to take a break. Maybe it was a quick trip to the hospital cafeteria for a coffee, or stepping out to use the bathroom or make a call, or maybe going home for a quick shower. But in that time, that short time of stepping away, her mother died.
I hear this story all the time. Of people being with their loved one for every second except for the moment they actually pass away, and the regret that follows them long after.
Or maybe the questions and second guessing are more far reaching – should we have gotten treatment sooner? Should we have placed him in that nursing home? Why did I lose my temper and get frustrated with her? I should have been there, I shouldn’t have hired a caregiver, I shouldn’t have lived so far for all those years, I should have told him that I loved him more often…
It can go on and on and on.
So back to the example of the daughter and the hospital. If the daughter had known her mother was going to die in that moment, would she have left? If someone had said, “Your mother is going to die at 3:30 this afternoon”, would she have gone for the shower or coffee at 3:30? Of course not.
But we beat ourselves up afterwards, as if we should have known better. As if we had this information and chose to ignore it, even though logically we know that’s not the case.
The other scenarios are just as bad…second guessing treatment or nursing home placement, or feeling guilty over things that were said or thoughts that we had…
Why does a caregiver (the one who quite literally gave care, concern, love, and assistance to their loved one in their final days) so often question themselves once their loved one is gone?
There are many answers, of course – a person’s natural inclination to second guess themselves, or a personality of taking blame and feeling guilty throughout their lives. Or perhaps it’s as simple as the caregiver’s mind wandering aimlessly with its new-found time. With no one to care for there is nothing left but time- time to think, time to second guess, and time to feel guilty.
Whatever the reason, I believe there is a way to relieve some of this guilt. The idea came to me as I’ve watched a loved one of mine act as caregiver. Being in this line of work, knowing the script that will be followed and wanting to spare her some of this pain, I suggested she write herself a letter.
For some it may seem “too late” as their loved one is already gone, but I say it is never too late to put our thoughts on paper. And the outline of the letter, for whoever is writing it, could go a little something like this:
Being a caregiver is hard. It is an honor and it is a privilege, but it is HARD.
At times I feel I should know more, or do more – yet I can only know or do what I am capable of knowing or doing.
While I may have support from friends, family and the medical establishment, in the end- the decisions rest entirely on my shoulders.
I have no ability to predict the future. I don’t know what treatment, pill or therapy is going to work or not going to work. I can’t say for certain that the choice I’m making is the right one or wrong one. I lack the ability to stand at a crossroads and simultaneously take each road so I know which will have the best outcome. I am always crossing my fingers, spinning the wheel of chance, and hoping for the best.
I need to remind myself that at most points in life there are rarely clear cut right and wrong answers and usually a whole lot of grey area answers somewhere in between.
I have to remind myself that the person I’m caring for has choices, and has made choices, and that I am not (or have ever been) totally in control of what happens.
I need to remind myself that I’m doing my best or that I have done my best. Some days my best was not very good. I need to forgive myself for that. If I’m telling myself that I didn’t do my best, or not as well as I could have, I will remind myself that I also never set out to do harm or do things badly.
I need to release myself from guilt for any thoughts I may have had about wanting this to be over. It will serve me better to remember that I have only ever wished away a time of confusion, pain and exhaustion. There was never a time where I didn’t want my loved one here with me, healthy and happy.
I need to let go of things that have happened. If a decision has been made and I feel I “should” have done it differently or better, I need to remind myself that no amount of thinking, ruminating, or obsessing about what has happened in the past can change or improve my present or future.
I will devote my thoughts to my loved one – who they are or were, what they have meant in my life, and what they would want for me in my future. If I feel myself sliding back into the “should” haves and “shouldn’t” haves, I will feel their loving influence direct me back to a path of caring for myself.
I will struggle and I will persevere. I will be gentle and patient with myself. I will take help when it’s offered and when I feel it’s right. I will take time to be by myself when I need it, and I will try to surround myself with people who understand what I’m going through, if that is what will help get me through the day.
I will do all of this. And I will do it every day, until I no longer need to do it any more.“
For anything that’s left – if there are apologies you want to make, or forgiveness you need to find for an apology you know you’ll never get, for the “should have” and “shouldn’t have” thoughts that circle endlessly in your head, write them down.
Recognize how freeing putting our thoughts on paper can be. Releasing them from a mind that will never let them rest, to a piece of paper where they can be recognized, honored and finally freed.
Know that sometimes, the tangible act of writing to yourself or your loved one may be the only thing that’s left to do. And perhaps the only way to free ourselves, forgive ourselves, and move ahead.
Being a caregiver can be very isolating as we may not have the time or energy to socialize. In the days following the loss of someone we’ve loved and cared for, we may find ourselves with more time than we know what to do with- but are there people around to spend time with who’ll understand?
In time, most people do make their way back to their life and to those activities that took up their time prior to their life and role as caregiver.
But as we make this slow transition back, it could help to connect with someone who understands. Caregivers struggle with the loss of their loved one not just because they’ve lost an important person in their life, but they may also feel that they’ve lost their role and purpose.