There are more than 50 million people in the United States caring for loved ones 18 years of age [or] older. And there are at least another 10 million caring for loved ones with special needs, younger than 18.
–“You Are Not Alone,” Family Caregiving 101
Family members requiring serious medical care often receive better care when a relative or patient advocate is constantly present. We obviously love and care for our family members so much and insist on the very best treatment for them. If you are an adult, it is very hard to advocate for yourself effectively when you are not feeling well and having someone to help is wonderful. Children cannot advocate for themselves and parents are essential both to coordinate care and to communicate things that only a parent knows, such as subtle cues about how a child is feeling. With our busy healthcare system, caregivers also help to alert the nursing staff for simple tasks like, “We need…”a new I.V., to go to the bathroom, more pain meds, etc.” That person who can walk out there and call for a nurse if the call button is broken (had that happen too!) is invaluable!
My now-10-year-old son was born with a cleft lip and palate and kidney reflux. We knew about this from the 20-week ultrasound. It’s heart-breaking to find out that your child will be born with birth defects. We consider ourselves extremely lucky our son’s condition was physically related and therefore fixable. But in all of our dreams of having a beautiful baby, having one with physical flaws is not what we envisioned. When our son was born, he required a number of surgeries, medications and procedures that spanned several years. It was an emotionally and physically exhausting process but he is now a happy, healthy kid.
Most parents face a medical challenge with their children at some point in time, involving hospitalization, surgeries, etc. My daughter, for example, was recently in hospital with febrile seizures and pneumonia and I was “stuck” with her unexpectedly for 4 days! Having a plan for these type of emergencies and knowing how to help others is a great idea.
Caregiver Responsibility #1: Communicate with Friends and Family
As soon as I found out about my son’s condition, I cried and was frustrated. And I told EVERYONE who knew us that we were going to have a baby BOY (we wanted a boy so badly we could taste it!) that would be born with a cleft lip and palate. This way, when people first met my son, they wouldn’t (hopefully!) be taken aback by his appearance, but would be expecting it and would just embrace this beautiful baby boy with all of their hearts–which they did! And not only that, an amazing girlfriend actually came out and told me she was born with his very same defect–had NO CLUE!! Amazing people and friends came from this experience!
A few tips for communicating medical information:
- Share as much information as you are comfortable sharing. Most people are naturally curious about health conditions and may need to research what you are facing in order to understand how best to support you. This could be helpful since they will know more about the condition, what odds you are facing, and any precautions they need to take to protect themselves or the patient. You also gain more eyes looking out for the latest medical research information on that condition. If you don’t want to share very much, make sure you communicate that.
- Create an information hub. People who care about you will want to stay in touch about your medical progress. Making a million phone calls can be emotionally and physically draining. Setting up an email distribution list, a blog or making regular updates to a Facebook page is a great way to keep everyone posted without exhausting yourself. If you are not technically savvy, designate a close friend or family member to serve as the information hub for you. This way, people can send their regards, well-wishes and respects. It’s a wonderful feeling reading through and having that support in times of crisis.
- Forget about returning every phone call or email. People understand that you are stressed, sad or unable to get back to them. Return the calls and emails you want to and ignore any unhelpful or irritating information. We all say and do the wrong things sometimes and most people don’t intend to hurt or upset you.
Caregiver Responsibility #2: Organizing Medical Records and Appointments
There are three medical-oriented tasks the caregiver has:
- Understanding and following the treatment plan prescribed by the doctors/medical specialists
- Ensuring that follow-up appointments are made and transporting the patient to and from these appointments
- Coordinating health insurance/payment for medical treatment.
This can be grueling–especially in the early stages where doctors are discovering what’s wrong/ the extent/the treatment plan. There are three simple tools that will be enormously helpful to you in this area:
- A notebook or personal health binder. Write down all the information you receive! You simply cannot remember all of this information and writing down the information will also make it easier for someone else to step in to help you should you ever need it. If your patient requires a complicated medication schedule, make sure there is a spot in the notebook/binder to write down when medications are given. My biggest issue isn’t what dosage or how often but tracking that I actually gave that dose! I make a checkoff list when there are multiple day meds, and if it’s say 3 times a day then I write out the number of days with 3 boxes under each and check it off when I’ve given that dose. It’s visual and a constant reminder. And I leave the meds on the counter (unless they say to refrigerate) so I absolutely don’t forget!! (Note from Anne: see also these other tips on medication tracking.)
- A cell phone. Your phone should be glued to you at this point in time! You will need it to schedule appointments, check up on insurance and keep in touch with family members.
- A calendar. After every medical visit, you should be writing down when the next appointment is (or sometimes, when you need to call back to schedule the next appointment), when to refill prescriptions, when to call the insurance company, etc. Not only will this information keep you organized, it again will allow someone to help you if needed. The calendar can be electronic (such as on your smart phone) but I prefer a paper calendar (so if you lose your phone, the battery runs down or it breaks your calendar isn’t lost.) (Note from Anne: I have found that I need to keep all calendar appointments in two places, one on paper and one electronic so that I always have a backup.)
Caregiver Responsibility #3: Make it Easier On Yourself
Wear Black, Washable, Comfortable Clothes
One piece of advice I give to anyone caring for someone after surgery or in the hospital: WEAR BLACK!! Seriously!! And make it comfortable. You can be in those clothes for hours and hours and hours. And especially with a little kid–you can get all sorts of bodily fluids on you, and if you’re wearing white or light colors it will make you so crazy disgusted—if it “blends in” there’s a greater tolerance. It’s my go-to color!! I tell everyone! (Note from Anne: If black is not your color, you might try patterns like paisley or prints. They hide a lot of dirt and stains as well.)
Network with People in a Similar Situation
If you are like me and remote from family–and all of my friends have young children of their own or full-time jobs, you are on your own as far as caring for this kiddo. Which is fine–but it takes everything out of you. The best solace I found was in other parents in the same/similar situation. In the hospital, when my son was well enough, we took him to the play room. One time, he was 11 months, we put him on a pool table with another tiny guy with cancer, and the 2 boys rolled pool balls to each other. Priceless–and the mom and I talked–not even about the hospital–but what museums were nearby, fave restaurants, what part of the city we lived in. It was great to mentally check out for a few minutes out of the craziness. I think with Facebook and constant updates and internet access in hospitals now that it would even be easier–a connection to the outside world with direct friends and family. At the time, believe it or not, that didn’t exist.
Also, a network that was hacked years ago and couldn’t recoup is cleftline.org. They were amazing at connecting about 5 of us prego moms with cleft kids. We still keep in touch and love it! So we couldn’t converse in hospital–we were from across the country–but emails once home were so integral. It was great for people to empathize!
Caregiver Responsibility #4: Remember to Take Care of Yourself and Let Others Help You
How do you balance a child whose needs are SO HUGE with taking care of yourself?
In short–it’s tough! I’ve talked to many friends who either had cancer themselves, had a spouse with cancer or a medical condition, or children like myself. All of us have a common theme—our physical health is severely lacking under the duress of hospital care. Your entire life changes to focus on taking care of that person. We eat at McDonald’s, or buy a tray from the hospital cafeteria….not the healthiest. But at this point it’s sustenance! It’s what is close and available and fast. Now Subway’s popping up in more hospitals–so that’s a huge help! But it’s not the same as a home-cooked meal either.
What friends can do:
“More than any other service respite is what family caregivers want most. The primary purpose of respite care is to provide relief from the extraordinary and intensive demands of ongoing care to someone with special needs, thereby strengthening the family’s ability to provide care. Respite care is planned and proactive. Respite means taking a break before extreme stress and crisis occurs.”
–Respite, Family Caregiving 101
“Caregivers appear to be so focused on helping family members that they often forget to take care of themselves . . . “
– William Shrank, MD, MSHS, of Brigham and Women’s Hospital and Harvard Medical School, quoted in “New CVS Caremark, Harvard and Brigham and Women’s Research Finds Family Caregivers Likely to be Non-Adherent to their own Medications,” PR Newswire, May 25, 2011
Most of us when we hear someone is caring for an ill person say something along the lines of, “Please let me know if there is anything I can do to help.” Most caregivers will never let us know, even if they really do need help.
The caregiver probably doesn’t want or need your help caring for the patient but one of the best things you can do is to care for the caregiver. You should stay in touch, be watching for signs of stress and depression, anticipate needs and be ready to step in.
Some helpful ideas:
1. Stay in touch. Put it on your calendar to email or call the caregiver at regular intervals. Send a quick note that is bright and uplifting. Try to share something funny. The support, love and friendship is priceless during this time. Provide diversions, varied conversation (YES_even in hospital I want to hear how your kiddo made the winning goal! Or what funny thing happened to them at school)—life doesn’t stop—and I think that’s key. Keep us occupied! Most of us have trouble with this because we really don’t want to send something upsetting. We don’t know, for example, if we should share news of our children when their child is sick, whether we should remind the person of some activity we used to share together that the person no longer has time for, etc. When in doubt, here is where we can rely on viral videos, chatting about what happened on TV, your pet’s latest antics or other trivial topics. “Thinking of you. Thought you could use a smile.” is all you really need to say.
2. Give restaurant coupons/gift certificates. Once home from the hospital, one wives group when my husband was deployed–instead of bringing meals (it was just me and my son at that time) brought over literally 20 coupons for meals at a variety of places around my house—Rubio’s, Subway, Carl’s Jr.–yes, fast food, but places I could go quickly, get food and get back to the house. BEST GIFT EVER!
3. Bring Groceries/Meals. The last thing you have energy for is shopping for groceries–unless your amazing mom comes to help out (which mine has several times!) Carla’s muffin basket, amazing briskets and pulled pork and food that was to die for–I am so grateful!! Lori’s white mocha and tortilla soup, Tina’s chocolate basket and Tara’s coffee and treats were amazing too. That’s what stands out most. If the caregiver has not asked for food, make sure you bring something that can be frozen for the future and try to remember any dietary restrictions the person has (vegetarian, gluten-free, low-carb, etc.) If you are on your own, signing up for a grocery delivery service or finding a supply of shelf-stable goods like powdered milk, canned soup, frozen foods, etc. can be a lifesaver too.
4. Provide entertainment for the hospital. A selection of magazines, a book of puzzles or crosswords, materials for a portable craft the person likes to do, a favorite book or other distractions help to give the caregiver a mental vacation. Providing entertainment for any children involved, such as stuffed animals, beautiful balloons and activities is a wonderful treat for tired parents too.
5. Insist on doing something. Rather than offer generalized help, pick something and do it. For example, “I am putting it on my calendar that I will babysit your children on the evening of _______ so that you and your husband can have dinner out together.” “I have a massage appointment waiting for you on Thursday afternoon at the ____ spa and am coming to the hospital to watch ___ while you get some much-needed pampering.” “The maid service is coming for the next month every Saturday to clean your house at my expense.” “I will be mowing your lawn this summer.” During holiday season or birthdays, you might offer to go present shopping or provide a list of gift suggestions and online links to help the person do their shopping quickly themselves. Offer to take photos or videos of the caregiver’s healthy children’s activities if they are unable to attend those events. Even if the person protests and says they don’t want/need the help, most sources recommend that you insist and remind the caregiver that they need to take time for themselves. Even if you are ultimately rebuffed, few people will hold it against you that you tried to help.
And I pray you never need this information!
What helpful tips do you have for supporting caregivers? Please share in the comments.