By a mom who happens to be a doc with an entrepreneurial spirit

When mamas leave

When mamas leave

I feel the need to get something off my chest this week. I recently received an email from a mother who has a terminal illness and her time on this earth is coming to an end. She reached out to our group trying to find somebody to help with some extracurricular activities her kids participate in after she dies. Her e-mail was very matter of fact, she was putting her affairs in order before she died. Her kids were part those affairs. It was so easy to see myself in that situation. Reading the e-mail gave me goose bumps.

Had I not been in the field I work in, my first reaction would have been anger. How unfair is it that she has to die? That these children lose their mama so early? But I have seen enough to know that life is rarely “just” or “fair”. The bad don’t get punished and the good don’t get all their wishes to come true. As much as I would like it to, it just doesn’t work that way.

Now, this woman was sick for a while and she prepared herself and her kids for her death. Obviously this e-mail is not the type of response I expect from somebody suddenly told they have a life threatening condition. Even so, it surprised me because she was so factual about it. I was also surprised by the fact that she worried about taking care of all the little things. Even the after school activities! It just brought home the fact that mothers have the capacity to be such amazing creatures. Selfless, giving. Always putting their children above them, even when facing death.

It bothered me for days that these young kids would have to grow up without their mother. She had fought this illness for years and now she was losing. What do you say to someone in this situation? Often we like to say I’m sorry. My guess is that it doesn’t make her feel any better. It was also interesting that I was having these concerns, when I deal with death and dying all the time. This felt different though, it is easier when you don’t know the person and you are working with a family in a professional capacity. Also, my patients are children, so it is not this exact issue.

What can you tell a mother who is dying before her time? Before she  has been able to enjoy a full life? When has to leave so much behind? Is there anything you can say that will make a difference? Is it selfish to even think so?

When my patients’ families are losing a loved one and there is nothing we can do, I always try to speak from the heart. No formality, just honestly what I feel. I always add that I am sorry that they have to go through this, that nobody should have to go through losing a child, that I wish there was something more we could do. I am usually not speaking directly to the person who is dying. The families usually want to have those conversations (assuming the patient is old enough to understand).

Also, there is certainly nothing more painful for a parent than losing a child. I would rather die a million times over rather than lose my baby. We are not wired for our children to die before us. Luckily, in the hospital we have tons of resources to help the families get through these hard times: psychology, social work, palliative care, child life, pastors/priests/rabbis, etc. Out in real life though, I felt…. unprepared.

People’s thoughts on their last days

So I started reading about the experiences people have around dying. What to do when mamas leave before their time? A common thread was that most people enjoy having someone who listened to them. However, as suspected, there are no magic words you can say, we are all so different. What offers comfort to one person may do nothing for the next. There are, however, several things I noticed everyone agreed they did NOT consider at all helpful in their final days:

  • Most people did not enjoy being asked how they are feeling – end of life due to an ongoing terminal illness is often surrounded by physical and emotional pain. Assume that they aren’t feeling so hot and skip the question.
  • Avoid crying – because it is really not about you and it is not the job of the dying person to comfort you or feel bad because you are sad. Be strong, hold the tears and cry when you are outside. I got really good at this one with time, always holding back tears at the bedside and letting go when I close my office door.
  • Don’t say you can still get better or you need to keep fighting – the person is well aware that there is nothing left do and they are dying.
  • Keep asking what they need – often times in the initial period when the person is diagnosed, people are present and seeking to help out. However, usually it is not in the beginning that the person needs something. It is more towards the end, but by the end many people disappear because of fear or sadness. Remember this, BE THERE and periodically ask what they need.

In the end, the most common theme I found was not surprising: everyone wants to have a dignified, pain-free death surrounded by love. Not so different from my preferred exit-life strategy when the time comes.

 



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