Caregiving Support

You've received the call. We all have.

The phone rings, shattering the normalcy of everyday life with news of serious illness. Or an accident. You listen, your heart pierced, feeling as if you've been gut-punched.

Your sister has cancer; your dear friend, ALS. Your co-worker has been diagnosed with multiple sclerosis; your father is being treated for Parkinson's. A professional associate has been in a car accident; a neighbor suffered a stroke. Or some other disease, illness, or accident is afflicting someone else close to you.

It can't be, you think. Not him. Not her. Not now.

Hanging up the phone, you take a deep breath, trying to make sense of it all. Finally, the realization dawns on you that to get through all this, they will need help. Your help. Though you're not sure exactly what to do, you begin to wonder:

"What can I do to help? What could I possibly do that might take some of the load off his wife or her husband? How can I show her how much she means to me, how sorry I am that all this has happened, how grateful I am for all he has done for me, how truly I want to pitch in and help him weather this storm?"

Naturally, each person and each circumstance is different. With that in mind, what follows are guidelines, suggestions, and tips for how best to step up to the plate and make a difference in the life of a friend or associate who needs help.

Truly, each person and family is an ecosystem unto itself -- unique and fragile, strong yet enduring. An essential part of our task is to discern how to respect the extraordinary gifts of that ecosystem, while at the same time make a positive and life-affirming impact. It is, after all, holy ground -- we all are. And at no time is the holy ground of the human spirit more apparent than when our hearts are pierced with sorrow, our lives pitched into disarray.

Certainly no single proffer of help or menu of activities will be universally beneficial to every person or every family -- or to their delicate yet sturdy ecosystem of habit and personality, experience and preference. The trick is to craft a plan of community care, a template for compassion in-action that both respects and honors those we serve.

And that is easier done than said. (Translation: Don't just talk about it: Do something.) All too often we delay helping out a friend in need because we don't know what to say or do -- we're uncomfortable facing the illness, or the person with it. Sometimes, it feels easier for a while to avoid the discomfort by avoiding the person who needs our help.

Many times, people with a serious illness report the hurt caused by the 'disappearance' of a dear friend or what seems like the callous disregard of an associate or co-worker. Most of the time, the people involved are neither callous nor mean. They're just under-tooled. And perhaps unacquainted with the basic rubrics of community support and outreach.

Here are a few guidelines and some suggestions as to 'How to best help a friend in need ...'  

Guidelines for Helping Friends in Need

• Acknowledge reality with empathy. One of the worst mistakes many people make is the 'pretend it didn't happen' approach. It might be that a friend or co-worker is reeling from a brand new diagnosis -- maybe so much so that he or she isn't comfortable talking about the situation in detail -- and that's OK. But nevertheless, it is essential to acknowledge reality with a gentle: "You may not be ready to talk about it just yet, but I want to let you know how sorry I am about your illness. You and your family are in my thoughts and prayers." (If at first you're uncomfortable with a verbal interaction, a note or email works just fine too, as long as the tone is empathetic.)

• This guideline is just like the song: RESPECT. Remember: People who are seriously ill and their families are experiencing severe stress. The goal is to facilitate help in a way that eases their burden, not adds to it. Honor boundaries. Listen well. Keep confidences. Offer, don't push. And mind that Golden Rule: "Do unto others as you would have them do unto you..."

• Go the distance -- with loving-kindness. Real friends are in it for the long run ... and for all the right reasons. They don't cut and run; they don't manipulate or control. Genuine friends take a few breaths, roll up their sleeves, and go about the business of discerning what help might be in order.

• Leave your baggage at home -- or at the office. Vulnerable folk struggling with a serious illness and their caregivers don't need your difficulties added to their own. This doesn't mean you can't cry or sorrow along with them -- that can be a tremendous help, as can allowing them to vent, tell their story, and express hopes or fears. It does mean for you to try to be net-energy positive within the situation, not net-energy negative. 

Suggestions for Helping Friends in Need: 

• FIND OUT "Who are the closest friends or associates?" These might be the best primary contact persons with the family in terms of ascertaining and meeting needs. Clearly it's a lot more 'net-energy negative' to try to articulate personal needs or vulnerabilities to a stranger or to someone with whom you don't feel close. That's why, if possible, the main contact person should be someone to whom the family feels close, someone already trusted.

• COMMUNICATE with each other. With permission from family, friends and relatives should pool information and work together to prioritize and coordinate needs. One of the toughest things for some seriously ill people and their families is to have to repeat again and again the daily medical progress report to a slew of people who all want to know and want to help. The process can be exhausting.  A simple communication plan via phone tree or email can alleviate a fair chunk of daily stress. That way, unanswered emails and phone calls don't loom large on the horizon of an already difficult day. Note: Some people actually love all those phone calls and emails! So be sure to check in before automatically setting up a triage system.

• IDENTIFY AND COORDINATE RESOURCES, if possible. Imagine the ill person and their family as the hub of a wheel with spokes radiating outward. One spoke connected to the ill person might be extended famil -- cousins, aunts, uncles, brothers, and sisters. Another might be professional associates or co-workers. Still another spoke might be fellow-members of a faith community or neighbors.  To be most effective and least intrusive in developing a plan for compassionate care, each of these groups may wish to identify one person who will serve as the main intersection point with the family, and with the other groups. In this fashion, those who wish to help are identified and tasked to maximize positive effect and minimize negative effect or overlap. (The last thing anybody needs is 200 meals and an overflowing freezer in the first week of treatment and 0 meals and 0 help by the fourth week!)

• BEGIN TO CARE. DO SOMETHING TO HELP. After receiving the initial 'go-ahead' from the ill person or their family, get started. And if, by chance, the support system is limited, you may want to just do what you can to assess the needs and cobble together a plan with close friends or associates including, among other things, meals, transportation, yard-work, prayer support, or check-in phone calls or visits.

Sometimes, instead of a whole lot of coordination, what is needed is someone (you!) to step up to the plate and just begin the process. Do something to help, even if that help is modest, say, a meal or a note, a phone call or a visit. The truth is: a fancy organizational schematic is fine and good, even necessary at times, but what is really needed is love-in-action. What is really needed is simple friendship and neighborly compassion.