In the last issue of My Generation, I told my story of what it’s been like to have a spouse with brain cancer. My husband Ted’s illness threw us both into difficult new challenges, and placed me in the role of primary caregiver.
Many of us face being caregivers and it is a complex gift. Here are my top tips on caring for yourself during this time:
Lower your expectations. It’s impossible to do everything. Life is different now. What can you let go? Cook less? More take-out? Cheese/crackers/salad meals? Anything that saves time and energy is worth considering. Try out options, and don’t judge yourself.
Permission to ignore. It’s OK to not answer your phone, email, social media, superfluous invasions such as surveys and supermarket games, and invitations to gatherings. Prior commitments may need to be broken. Key phrases: “It’s been a tough week.” “Thanks. I’ll see.”
Permission to filter. Everyone’s got an opinion, a cure, and yes, unasked-for advice. You are allowed to discern, redirect, back away, and even feel annoyed. Allow yourself to listen or not. Key concept: Self-preservation. Words: “A new miracle cure? Hmmm.”
Small pleasures. Coffee with a friend. Ten minutes “sampling” in a gourmet store. An easy, fun read before bed. Putting everything aside and snuggling with your person. A few minutes of this goes a long way. I am never far from my prayer books, my comic books or a hug.
Get professional or volunteer help. For your loved one, and for you and your mental health, grab available lists of resources, to look over now or later. Some are useful. Don’t feel you need to say yes. Caregiver support groups may or may not be your thing. It’s highly individual. Maine has a surprisingly good network of available help.
Pack up. Keep a couple of healthy non-perishable snacks in your bag or car (nuts, fruit roll, crackers.) Grab a bottle of water or seltzer to take with you when you leave the house. Appointments have a way of stretching out, and there are always errands and delays that come up. Keep paper towels, tissues, cleansing wipes/sanitizer, and a few bandages handy in the car. My car gets cluttered, but I am ready.
Keep it going. This tip may not always work, but keeping a favorite activity in place is immensely kind to yourself: a class, an artistic outlet, a weekly flea market, a daily walk – something just for you, something unrelated to caregiving.
Cheat. Keep a cheat-sheet handy with the names and numbers of key medical people and frequent contacts (like take-out food favorites.) Pop it on your phone, in your bag, glove compartment, on the refrigerator – anywhere handy. It’ll save steps and hunting. I was told to keep a copy of our health care power of attorney papers on the refrigerator. Oops. I’ll go do that now. (see No. 1)
Stock up. If able, buy extras of things you routinely need so that during a more difficult week, you don’t run out of the essentials like paper towels, milk and dark chocolate-covered caramels. Today I ran out of one-gallon plastic baggies, which I use a lot. But I did notice I have three rolls of unopened plastic wrap. Ah, well. See No. 1 again.
Humor. This can be a tough one for a worn-out caregiver. But if you can grab the funny moment, you and your person can both get a laugh. Ex: (while putting on your person’s shoes and socks): “By the way, we have these in a lovely orange and lavender stiletto. Interested?”
Caring for the Caregiver?
If your friend or loved one is now someone’s caregiver, it’s natural to feel concerned and want to help. Here are a few do’s and don’t’s:
Do offer your time and talent. Keep it simple: food, rides, company. “I’m at the store. What do you need?” “Coming by next week to weed your garden. Ignore me.” “Making you supper on Wednesday. What do you like?” “I’m nearby. Want company?”
Do cook. But keep in mind people may have food preferences/allergies. You want your efforts to be enjoyed. “Would you like some muffins?” Key words: “Could you use…?”
Do remember the “patient” is more than his or her illness. Early on, a friend of Ted’s took him for his radiation treatment, then out to lunch. It was just a couple of guys, simple and fun. And I got a break.
Do drop back in. If it’s been a long time since you’ve been in touch, it’s never too late to connect. Caregivers, maybe more than others, understand what happens when unexpected life events and issues appear. Try sending a simple email, as opposed to a long phone call. One friend writes to me and then says, “No need to respond.” Perfect.
Do face the overwhelmed caregiver very gently. The demands of caregiving tend to be inconsistent, but are often tiring. And the lives of these people are changing drastically. Sadness and other emotions like fear come into play. Little gestures help.
Do stay out of the trenches unless you are very close to the family. It’s absolutely OK to do nothing major to help. Send a card or an email; send good thoughts; pray. One of the kindest gestures we’ve received is a monthly card/sketch from an old friend who has a busy work and family life. But getting his mailings is something we both cherish, and gives us a lift.
Do limit phone time if the caregiver sounds busy, or use emails, and so on, to communicate.
Don’t be offended if your kind offers are turned down. Sometimes, there is just not enough time in the day, nor the energy to be social.
Don’t make assumptions about what is going on with the caregiver or his/her person. Give a little space. Caregiving is complicated. Unless you have a huge safety concern, trust that the caregiver is plugging along and has access to needed support.
Don’t give suggestions about how to treat the prevailing illness. Some people want to hear any and all ideas, but many do not. Well-meaning advice from people with no medical background and the endless list of “you should try’s” is not helpful. Tread very carefully in this area unless you are a very close friend or relative, and even then, respect the family’s decisions that they have carefully made with their own choice of providers.
Kathy Eliscu, who lives in Westbrook, writes “Lightly Roasted,” a humor column for Maine Women magazine. She also blogs at www.kathyeliscu.com.