All your other responsibilities are still here–work, bills, childcare, household chores, family obligations. None of it went away with the unwelcome arrival of illness into your family. So how will you cope with the new demands on your time plus physical exhaustion, emotional stress, and everything else that goes along with this diagnosis? The best thing we can tell you is that everything you feel is valid. You will even see conflicting advice below, from other caregivers. What works for one might not work for another. But, we hope that something here will resonate with you. For more, download our app, and look through our Living Hope Library.
Taking care of yourself
Some well-intentioned friend will tell you to take care of yourself. One caregiver laughed as she described this common advice, but she did admit that she needed to take little breaks in order to be able to interact with her husband, the doctors, and nurses from a place of calmness. Many of our families agree that the basic “put on your own oxygen mask first” analogy applies, though what this means differs from caregiver to caregiver. “People would say ‘go get a massage.’ Yeah right. That’s not going to happen. But when my husband was in the hospital I did take the stairs instead of the elevator, drank a little of my specialty coffee in the garden, and created a space for myself to take a breath in those ten extra minutes.” It might seem hard to find the time, but even if it is in small increments, you simply must take care of yourself too.
Help from friends and family
Most caregivers we spoke to found it difficult at first to accept help, “No one wants help; everyone wants to do it themselves, but you can get yourself in trouble that way because there is simply too much to manage,” says a mom of three. “Humble yourself enough to accept help. If you don’t, you will run yourself into the ground. Even if you don’t think you need it, you do. It’s hard–one of the hardest things for anybody–no one wants other people up in their business, but you have to open up.”
One husband describes that people want to help, but they just don’t know what to do. He suggests having a list to hand out to those who are willing, and add more to it than meals. A friend who enjoys yardwork, for example, might be willing to come over and rake leaves. Think of every task that can be outsourced and farm out those you feel comfortable giving up control over. Break down stressors into smaller pieces: what can you ask for help with on each of these big, daunting jobs? For example, insurance is a huge stressor for many families. One family we know asked a friend to come over and help wait on hold. Some families use websites such as My Cancer Circle to help organize their needs.
It might be worth taking a little time one day to pull together legal documents and health information so those things will be at your fingertips when needed, and you might see a few more areas where you can more easily outsource (such as help with insurance as mentioned above). This will also help if you are able to ask friends to help with driving to appointments.
Another family has a very different perspective. This mom of two preschoolers was reluctant to give up certain parenting and household duties, “So many people wanted to be helpful, which was nice, but I had to give myself permission that it is not my job for me to find a job for you to do for me. I had to be comfortable knowing what I felt ok with delegating, but not taking all the advice I was given. No one has walked the shoes you are in–no one who is giving the advice has done it.”
Your circle of friends will most likely change. One husband sadly admitted, “Most of my male friends have run away.” While this is a difficult reality for many, it leaves room for relationships with people who are going through similar circumstances. “That is one thing we loved about IoH,” he added.
Know that there will be some people who reach out with offers of help, and others might be the ones who sit with you quietly in empathy. One dad, who couldn’t get out, was especially appreciative of a new friend who came by with a few beers after the kids went to bed.
Talking to other caregivers/counseling
Don’t just talk to each other. “The caregiver and patient are going through the journey together but it is a different journey for each. They share some of the same concerns, but also have some different concerns,” explain a husband and wife who have lived with her terminal illness for the majority of their marriage. “It can hurt a couple if the only time they talk is together. Lots of times, attention is given to the patient, but the caregiver has just as hard a time and a whole different kind of fear.”
Many caregivers recommend seeing a counselor and also nurturing friendships made with other caregivers through IoH.
Legacy formation and preparing for different scenarios is not an act of giving up
Some caregivers feel disloyal if they voice worries about the future and how that relates to legacy-building activities. IoH helps start these conversations towards a path of living intentionally, “It was helpful as a caregiver for me to internally be able to recognize that finding ways of giving gifts from my husband’s life was an act of love and, in a way, defying death,” notes one retreat-goer. On an IoH Legacy Retreat®, or Hope@Home™ weekend, diagnosed parents and their caregivers discover the perspective that preparing a legacy is not giving up, nor does communicating fears amount to a lack of hope.
You are doing the best you can, and that is all you can do
Other caregivers want you to know that what you are doing is enough, “Know that you are not doing anything wrong. In trying your best, that is the right thing to do. When you feel guilt, be clear and own in that moment, ‘I’m trying my best and that is good enough.’”
Another says, “One of the things I had to learn over and over again is that human capacity is limited. These experiences take more out of you than you can replenish, and you can’t blame yourself,” shares a mom of a teenage daughter and a pre-teen son. “You are going to be compromised. You are not going to be able to always be patient, be loving, plan, or make meals. Whatever your thing is, you might not be able to do it. It is so important to normalize that uncomfortable truth, and to find ways of accepting it, and to discover ways of adapting. There will be many seasons, and letting each season be what it is can be what survival looks like.”
“I can’t fix it, I can only make sure my wife gets the best treatment, so I have to let go of a lot and rely on my faith. I can’t deal with it on my own,” observes a dad of two.