Ask the Advocate: What are your best tips for caregivers?
A diagnosis of lung cancer is devastating and affects the patient and their loved ones. As a caregiver, it can be hard to know the best ways to support your loved one. To get both perspectives, we asked for insights from someone living with lung cancer, Anita, and someone with experience as a caregiver and family member of a loved one with lung cancer, Kimberly. See what our advocates had to share:
The number one piece of advice for caregivers is to take care of yourself! I know you’ve heard it before, and I suspect, like me, you roll your eyes and sigh a little when you hear it. But there is a reason it is repeated so often. Caregivers tend to completely drain themselves while caring for others. That’s not fair to you, but also, it’s not fair to the person you are caring for. Think about it, what kind of care can you offer when you are depleted? You deserve better, and so does the person you are caring for. The rule to take care of yourself applies to all caregivers, but how to do it is more individualized. For starters, though, don’t skip any of the basics: get a good night’s sleep, dress in clean, comfortable clothes, brush your teeth and your hair. When you spend all day caring for someone else’s needs, it is easy to forget to do some of the basic self-maintenance. Give yourself a break and don’t feel guilty if you aren’t able to stick to a healthy diet all the time, but at the same time, respect yourself and eat foods that will nourish you and give you the energy you need to get through the day. Generally, avoid sugar-bombs that will give you a quick rush, then leave you depleted the rest of the day. But, if you have a treat, don’t berate yourself, and just try to make the next meal healthy. Finally, you need to be able to escape once in a while. I know it can be challenging, and it may take some planning, but it is important for you to get some breathing space and do something fun or relaxing. Think about what refreshes you. Is it spending time with friends? Reading a good book? Getting a massage or pedicure? Or maybe an overnight camping trip? Whatever it is, make it a priority to start planning your brief getaway. Look for respite care providers or home health aids in your area, or find a friend or family member who can shoulder the burden while you take a much-needed break. And after you have it, start planning your next one. Everyone needs a little joy, and something to look forward to. Taking care of yourself is one of the best gifts you can give your loved one.
I find the prospect of giving advice to caregivers to be rather fraught, and I sought input from my husband and a friend as I wrote this. I have been my husband’s caregiver through a few serious illnesses, one of which is clinical depression. Now he is supposed to be my caregiver while I’m still helping him deal with long-term issues. I’m a rather independent and thorny cancer patient who hasn’t needed much physical support to date, and who finds it difficult to accept help in general. Our balance of caregiving and care receiving is like a teeter-totter, going back and forth, up and down, and it is not tension-free.
I suspect that few caregiving relationships are tension-free, especially when stage IV cancer is involved. Everyone in the caregiving relationship is dealing with a lot of emotional issues around illness and mortality. There are some people who do a wonderful job stepping up, taking charge of the logistics of illness where the patient cannot. For those for whom this is difficult but who find themselves in the role, I wonder who and where is the support for the caregiver?
There are some important things that the caregiver can do that no one else can. He or she may be the first one to realize when it is time to reach out to others. Knowing when help is needed, being willing to accept help, and taking charge to get that additional help in place is a vital role.
This is the most difficult thing I need from my caregivers: someone with whom I can talk about the dark things. It’s a lot to ask, because all of the people who love me seem to also be in at least partial denial about what I face. It’s terribly isolating to be dealing with difficult thoughts and emotions, and to feel like I have no one to talk to. Sometimes I think that fellow patients can support this need of mine better than any of my family and friends. Caregivers, steel yourselves for the times when we need you to sit with us and hold our hands as we process our situation. To be able to do this, you will need an emotional support team of your own. Start building that team early, don’t wait until the situation is desperate. Take care of yourself.
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