Caregivers: The Forgotten Part of The System
Illness affects more than the patient
They were just sitting there staring back at me with empty looks.
He had just found out he has cancer.
I had just finished counseling him on his new medication.
His wife was frantically taking notes while I was talking.
I asked them “what questions do you have for me?”
His wife asked me “will this work?”
These are the questions we would get asked a lot, and the question I hated answering. I hated answering this question because I could not give a definitive answer. I couldn’t say anything that would ease their fears.
I would usually respond with “this is the standard course of therapy and we would not be trying this if we did not think it would work. We will monitor your husband regularly and ensure we are headed in the right direction.”
The fear would rarely go away, but they usually understood why I couldn't answer the question the way they wanted.
The beginning…
Cancer is a disease that affects the family, not just the patient. It upends everyone's life close to the patient. There is no such thing as normal the way they knew it. All their plans are now on hold. Trips are canceled, kids take a semester off, and caregivers take extended leave from work. They are all frantically googling the medications and diagnoses to see if their father is going to live. Is the doctor doing the right thing? Did the pharmacist tell us all the side effects?
Just a few weeks ago they were all sitting and eating dinner laughing about the past, but now everyone is trying to make the best of the present. The whole family is pretending everything is normal, but they all know it isn’t. None of them want to tell each other because they know that will make the other sad so they try to stay strong for each other and keep it all in. They are feeling helpless and dying a little inside while watching their loved one slip away.
The wife calls the clinic frantically “We can’t afford this. They just told me that it is going to be $5000 per month. What do we do?!?!”
Two weeks later we find a way to make the medication affordable. During that time the family was calling us for updates. Each time sounding more helpless.
“The new normal”
Now he's started his medication. His wife calls us saying “He isn’t eating anymore because he’s always nauseous. He just lays in bed all day. He’s not himself.”
He was the primary breadwinner, but he can’t work anymore so money is really tight. His oldest has taken the semester off to help with taking him to appointments and just help her mother with day-to-day things.
His once put together mother is now a shell of herself. He has to constantly remind his mother to eat. She isn’t sleeping because she is afraid something will happen to her husband at night. He hears her crying most mornings in the bathroom. He tries to reassure his mother that everything will be ok, but they both know inside that it isn’t. The recent scans were not good. Neither of them wants to admit it but they are both thinking it.
Nine months later…
There has been an endless stream of people coming and visiting him since he was put in home hospice. They just want everyone to leave so they can just get some peace and time to process everything. They are having to relive the pain over and over again explaining the whole process to everyone that comes to visit. They just want to scream and tell everyone to leave, but what would everyone else think of them? How ungrateful are they?
The day they were dreading finally arrived. He had passed away. They felt sad but also relieved. He isn’t going to be in pain anymore. They also felt relief that they were able to get their life back. They felt guilty. The last year has been hard for them too. They’ve put everything on hold and now don’t even know what normal is any more. All they know is that their life will never be the same anymore. Everyone is trying to be supportive but they have no idea what you are going through.
The caregiver problem in healthcare
The story of the caregiver is one that is often forgotten by people in healthcare. Everyone focuses on the patient and the disease but no one asks the caregivers how they are doing. We need to do more for them. We need to keep them in mind as much as the patient. They are the ones bringing the patient to all the appointments, and dealing with the insurance issues all while trying to keep everything going.
When you are creating a solution don't forget the caregiver. They are as important as the patient themselves. There are ways to make their life easier.
Creating solutions for caregivers
Easy access to knowledge is one of the biggest problems. Just the simple feature of being able to share information easily can help tremendously. Knowing what medications your grandmother is on can ease someone's burden. You live across the country and your father has a chronic illness and is getting routine labs. It would be nice to see them.
There is a lot of things happening in the mental health space some good some not so good. Maybe we will touch on that in a future article. One thing is for sure though that caregivers need help and need to be able to connect with others that are experiencing the same things as them. There are support groups for most ailments and rightfully so, but there is not much out there for caregivers. They also need support. They need help navigating this complex system.
We need to make caregivers feel like they are seen and that they matter.
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