If Someone You Love Is A Caregiver

This is the third in a series highlighting “The Complete Caregiver,” whose mission is “to assist parent-caregivers of special needs and medically fragile kids by providing information, activities, resources and support to help them take care of themselves while being great caregivers to their children.” 

Below is the final installment of my three-part interview with Lynn Rosser, founder of “The Complete Caregiver.”  Also be sure to check out the first installment, “General Intro and Resources,” and the second installment, “If You Are A Caregiver.”

POST THREE: IF SOMEONE YOU LOVE IS A CAREGIVER

I will never forget where I was when I got the phone call that my little nephew, not even born, had only a short time left to live.  He had just been diagnosed in utero with a heart condition, and doctors weren’t sure he would even survive the pregnancy.  This just weeks after his older brother, the first grandchild of the family, had been diagnosed with autism.

More than seven years later, I am happy to report that the little baby is now a healthy, happy boy, though he and his family have been through hell and back in the interim, with multiple surgeries and health scares, at the same time as they struggled to provide the best care possible for his older brother.

As some of you may already know, the little boys described above are the two sons of Lynn Rosser, my sister-in-law and the founder of The Complete Caregiver (TCC).  It is hard to describe the feeling of helplessness we all felt when we first heard the devastating news of the double-whammy diagnoses or the bewilderment we experienced at the thought of how we could possibly help the family cope.

Enter the final part of my interview with Lynn, as she provides tips for friends and family of caregivers on how to best support those caring for special needs or medically fragile children.  Consider the list below as a precious gift, since those who are going through a crisis will rarely be able to articulate to you their needs.  It is a post I wish I had been able to read seven years ago!

Q: If someone has a friend or loved one who is a caregiver, how can they best provide them with support?

A: There are a lot of things you can do! Here is a quick list of tips:

• If you are local, offer to accompany them to appointments to provide support and write down what the doctor or therapist says to do.  That alone can be very helpful.
• Assuming you feel comfortable with the child’s care needs, offer to provide some respite, even if it’s just so the caregiver can get a nap, take a shower or run an errand – it all helps!
• If you are able, consider offering to run errands, to do some housework or take care of a pet for your friend or loved one’s family.
• If the family has other children that need attention, consider taking them to a park or a movie or something, or having them hang out with your family for a day.
• Don’t say “call me if you need me” and expect the caregiver, who is overwhelmed, to follow through. If you are really sincere, it helps sometimes to say “I’m coming by to help you if you need it – here’s what I can offer – what works best for you?”  I’ve had people say “call me” and then if you work up the courage to do so, they suddenly back-pedal, so if you are willing to help, make sure you define your boundaries and take the lead in setting up the date, time and activity.
• Providing some take-out or home-cooked food for a meal is a great way to say you care!  Always make sure you know food allergies / sensitivities and preferences before dropping off a meal to make sure it can be enjoyed! You can bring food to a hospital, usually, as well. At the hospital, offer to sit with the child, if you can, while the parent takes a break. Sometimes just a quick visit, a hug and a cup of “outside” coffee or tea is an amazing refresher.  Little things count!
• If they are in a hospital far away, sending a card of support, or even an “I ‘heart’ you” text can be a good, instant connection.
• Care packages for families in the hospital are greatly appreciated. Consider collecting money from their community for a general ‘debit’ gift card, which can be extremely helpful – hospitals are expensive and hotel costs, fuel, or other travel expenses can be overwhelming.  Consider sending a small gift for the child and the parent. Other items for a care package might include puzzle books with mechanical pencils, snacks, mints, a journal (see below), toiletries (if the trip is sudden), a novel or book (or, if your friend has a reading device like a nook or kindle, gift them a couple books they can access through the web and put a card in the care package letting them know what they are receiving), a natural fragrance / room freshener, etc.
• Care packages for someone who is not dealing with being at a hospital, but whose child has just received a big diagnosis, can also be wonderful!
• Consider introducing them to The Complete Caregiver site and especially to the “Your Family’s Exceptional Circle” – offer to be an “administrator” and set them up at the link provided to “Lotsa Helping Hands,” an amazing, free, private way to organize practical help for caregivers!  Or, if they don’t need that kind of practical support, CaringBridge may a great way to share what is going on with a large group of people.  Also, the “New Diagnosis?” or “Understanding Your Child’s Diagnosis” is another good place to start on the TCC website.
• I would also recommend my TCC Workbook Journal, as it is designed exactly for the purpose of helping parent-caregivers, and would be a great gift for someone at a hospital with their child, or even at the time you hear of a new diagnosis. It is especially for people who will be providing long-term medical and/or developmental care.
• Keep in-touch, offer a listening ear without judgment or un-asked-for advice. Sometimes being a reflective listener or ‘sounding board’ is all someone really needs to get their head clear and their spirits up!
• Sometimes it’s hard to know what to say. You may not have had a similar experience, but you can still relate to the caregiver’s feeling of being overwhelmed, frustrated, or sad, or whatever is being expressed. The point is to honor what they are feeling and offer connection. If a family might lose their child, or is having a serious, life-altering medical issue with a child, finding ways to offer compassion, empathy, and genuine connection are the way to go.  Be mindful not to offer platitudes (Time Heals All Wounds, etc.), sympathy/pity instead of empathy, or to share how much worse someone else’s situation is – these tend to be distancing and can even make the caregiver feel bad! Be courageous – it takes a lot to allow yourself to be present in the midst of someone else’s pain, but it’s one of the most important gifts you can give.
• Finally, if your friend or loved one is receptive to spiritual assistance, offer to keep the family in your thoughts, hearts, and prayers.  And then do it!  Take some time to write down everyone and everything you want to pray about, or send love to, and then make a point of offering them up.

The Complete Caregiver was founded as a service to parent-caregivers and includes pages on organization of care and life (The Caregiver’s Footsteps), self-care for caregivers (The Caregiver’s Well), Caregiver Resources, and Road Maps for Families of Special Needs Kids.  Be sure to check out the latest addition, TCC Music for the Heart, which includes music donated by amazing artists who support the mission of The Complete Caregiver.

Media Recognition for The Complete Caregiver:

Asheville Citizen-Times, 3/28/10

Laurel of Asheville, June 2010

“Your Carolina,” July 2010

All images provided courtesy of The Complete Caregiver

This post has also been shared at Natural Mothers Network Seasonal Celebration Sunday.