Love the Caregiver as Much as the Patient

John L. Marshall, MD


September 26, 2011

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Hey everybody, John Marshall for Medscape. I hate this time of year. Summer is over. Everybody is going back to school and that nice slow pace of summer ends. And then everything is just ramped up and super busy. It has been really rainy here in Washington, so I'm kind of down. So we have to start from that perspective.

I have been thinking a lot about caregivers lately. I have a bunch of patients right now, most of them young, unfortunately married with young kids, and they are nearing the end of their lives. They have been fighting their diseases for a long time. They have been struggling and doing very well, and our whole system has really focused on the patient and how [the patient is] doing and the like.

What we forget all too often is that person sitting next to the patient -- the caregiver. Typically the spouse, but it can be another family member or friend who comes all the time. They are really the support crew for that patient who is going through the battle. We had a particularly tough case recently, a young woman who was in with a fellow. We were watching the husband and wife, who was the patient. She's really struggling. She's not long for this world and she's really struggling with how much more to do and should she do more?

I was watching the husband more than her this time around. The husband and I came out of the room and thought to ourselves, it's really much harder to be the caregiver than it is to be the patient, particularly at this point in the process. Think about it. The caregiver, right from the beginning, is terrified that his or her spouse is going to die, of course. Many times, we already know ahead of time that the patient is going to die.

Now the caregiver has to do all the stuff to try and maintain the normalcy of the family, and typically, the spouse must continue to work. He or she has to make sure the kids are still getting to their soccer games and are getting their homework done; they have to feed the kids and go to the grocery store.

At the same time, they have to be concerned for the patient -- their spouse or loved one. Are they getting the right care? They must be their spouse's advocate and take time off work to go to many appointments. Think about how many caregivers in our clinics every day are skipping work for that day to come and help the patient.

So it's really terrible. They don't want their spouse or loved one to die, but they also know that their lives are never going to be the same again. They are on a sort of death march, if you will, and it's never going to be the way they thought 10 or 20 years ago when they first got married and planned to grow old together and live a happy life.

There must be some element of the caregiver thinking, "What am I going to do after they die? How am I going to deal with things after they are gone?" On a certain level, the patient gets to die and hopefully go to a peaceful rest beyond suffering and pain. But the caregiver and family who are left behind are going to miss that person. They will have a hole in their lives, and how will they fill it?

I am talking about that end-of-life phase. What has been so striking to me lately about these patients and their caregivers, is that it's almost as if we want to let them go and get through to the other side. We want that suffering and intensity to end so the caregivers can move on, so they can get their lives going to whatever the next phase is, because there is a transition there.

They are sad. They don't want their loved one to die. On the other hand, they want to go on and move onto the next part of their lives. But they can't express that -- they can't tell anybody that because it just sounds terrible, right? But you know that it's going on in their heads.

What I have been thinking is that we don't do enough for those folks. We don't acknowledge it. We don't support them in a way. We don't warn them that these things are coming. Yes, there are books out there to read and the like. But they don't have time to do any of that because they are so busy trying to maintain life as before.

So with all this cancer, we really need to focus on that caregiver. We need to embrace and take care of them. Think about it the next time you are in clinic going forward. Love that caregiver just as much as you love that patient.

John Marshall for Medscape.


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