1. Be the trusted advocate. No matter the illness, the medical journey to heal can be lengthy and complicated, especially if the battleground is cancer. It is important to make sure that you — the caregiver — understand the treatment that your doctor has initiated, no matter how complex, and that all questions have been answered, including the many what, ifs and whens. If you need to research various options or get second opinions, make it happen. If you need a clinical trial, find it. If the patient is overwhelmed or can’t focus, they must feel and know the caregiver is the responsible advocate and is knowledgeable of the best possible medical journey. If they do, they will feel protected and loved, and thus empowered to just focus on their part: the healing.
2. Become the cocoon around your loved one. Every day I’d get into Jacqui’s bed and we’d hug tightly as she’d wrap herself around me while we chatted or napped. I always made sure she felt totally surrounded, completely cocooned, by my love, my strength, and my positive attitude. As a caregiver, you have to supply that grounding, that safety net. No matter how bad or creepy or doubtful a patient may feel, you have to provide an unconditional, unbending, concrete tower of absolute certainty about positive progress, as well as an ocean of love that will not allow anything to happen but the very, very best that can be. As caregiver, you must be the unmovable rock of strength and security — a granite-strong cocoon!
3. Don’t just be present, be a partner. You work as a team, in partnership with the patient, to be there and support them with any and all treatments, from MRIs to IV line cleanings. Whether double-checking with the nurses about the drugs they’re hooking up, making sure the bed is made or freshened while the patient is in the shower or bathroom, scheduling the physical therapists to keep your partner active and limber, dealing with the three meals and snack orders, you are there to deal with the many details that make up daily hospital life. An unspoken team partnership is crucial for caregivers to bring to the table and for patients to rely upon. It was my commitment to make sure Jacqui felt her partner was engaged with the journey 24/7. She knew it, she felt it, she counted on it.
4. Keep them active and involved. Sometimes it’s just being there to open the shades and point out how beautiful the sunrise is that morning. Sometimes it’s sharing an important front-page story in the news, or breaking out a favorite game, like Yahtzee, to encourage their competitive spirit to win. Sometimes it’s playing a CD of oldies-but-goodies and getting up to do some crazy dance steps to get a laugh — or better still, to get them to dance even if it means they’re standing on your feet because they are too weak to stand on their own. When you’re ill, the world feels like it’s closing in on you. It’s important for the caregiver to keep enlarging the boundaries and keep the patient involved with the outside world. Jacqui, who worked in women’s retail and was not familiar with daytime TV, really enjoyed watching “Ellen” when I started putting it on, as she saw women celebrating life — laughing and dancing every day. The will to live and being active with the outside world is crucial therapy.
5. Arrange for small doses of one-on-one time with special friends and family. Your loved one values friendships, and some concentrated time with a dear friend or family member can be restorative. Have a special friend come over for ten minutes to an hour (depending on how your loved one is feeling that day) and occupy yourself with a task nearby. This way you can be summoned easily if needed, but they still have some privacy and a small sense of normalcy. And if you need to regroup, grab a coffee with a friend or get on the phone with a college buddy. Do whatever it takes to remain strong, clear-minded and balanced. Your own good mental outlook is crucial to your partner.
The caregiver must become the dependable all-around partner for the patient, and if you can do that effectively and incorporate these five tips, he or she can relax as they heal and know the train has a co-driver and all is well with the arduous journey. The more you take on your shoulders, the less remains on the patient’s. Needless to say, this includes everything else going on with your home, financial concerns such as paying monthly bills, and keeping family and friends informed.
I was busy, as all caregivers are. And every single day, I am deeply grateful for Jacqui’s healing.