Earlier this month, I wrote a column for the Myeloma Beacon about the complicated “dance” between patient and caregivers.
I’m sure that all of my readers are familiar with my battle against multiple meyloma–and the invaluable assistance that my wife, Pattie, provides me daily.
But some of you may not realize that I was a caregiver before I became a patient, helping Pattie through her successful struggles with cancer over a six year period a decade ago.
In my column, I shared 13 tips designed to help both sides in this co-dependent relationship:
1) The most important thing for maintaining a healthy patient-caregiver relationship is communication. Both patients and caregivers need to let the other know what they need and how they are feeling. You’ll notice that the next few tips are also on this topic.
2) Think before you speak! Patients, in particular, need to keep in mind that your caregiver is also likely dealing with their own emotional and physical challenges
3) Ask for help when you really need it. But remember patients: Caregiver’s aren’t gophers or wait staff! Besides, it feels good to retain some of your independence, and it’s good to get up and get some exercise.
4) Conversely, the complaint I most often hear from caregivers is that patients are reluctant to ask for help. Not with the little things (see tip #3), but with larger, often emotional, issues that can hinder and complicate the patient-caregiver relationship. So…
5) Share your feelings! Let each other know when something is wrong, or is weighing on your mind. You will both feel better after talking about it.
6) Don’t be afraid to take a break or spend some time apart. Whether it’s spending some time alone or with your own respective family or friends, this is a must! You both need time to take your mind off of multiple myeloma and your patient-caregiver roles. Caregivers also need periodic breaks from their role, which can sometimes be very demanding or stressful.
7) Both sides should read one or more caregiver blogs regularly. Sure, reading patient blogs is important, too. But caregivers face a unique set of challenges, and both of you need to understand them.
8) Similarly, caregivers should try joining a caregiver chat room or forum. Attending a caregiver’s support group in person would be even better! But such groups are often hard to find. Or lobby your local support group to dedicate more time and promote activities aimed at caregivers.
9) Stay organized. It doesn’t really matter whether the patient does this or the caregiver, whichever works best for the two of you, as long as you have a system for keeping a dedicated planner or calendar listing appointments, medication schedules, and the like.
10) Caregivers, familiarize yourself with the patient’s health insurance. And don’t stop there. Make sure that you both have access to financial accounts, and if there is any, understand how the patient’s life insurance works.
11) Get both medical and legal power of attorney documents signed, along with medical directives. And don’t forget to update both of your wills!
12) I often write about how important it is to build a medical team. But how about organizing a caregiver’s support team? Family, friends, social workers, anyone who can help both of you make it through the day. By the way, don’t hesitate to accept help from friends and family when they offer. I have already said that patients should ask for help when they need it, but caregivers should too. Just make sure you spread the tasks around, so you don’t burn-out members of your “team.”
13) Last but now least, try and do some things together that aren’t all about being sick. Don’t forget to have some fun!
CLICK HERE to read my column, Pat’s Place: Tips for Patients and Caregivers.
Coincidentally, I received an email last week from Guy Magar, a TV and film director/writer/producer–and caregiver. Guy helped his wife, Jacqui, during her intense battle against leukemia recently.
In his email, Guy shared his thoughts about what makes a good caregiver. Allow me to pass-along Guy’s tips as well:
Caregiving with Love: Five Tips to Better Healing
By: Guy Magar, Hollywood Director
Whether it’s your wife or husband or child, or a relative or close friend you are caring for, it is paramount that you become the best caregiver possible for your loved one. As a caregiver for my wife Jacqui during her brave journey to beat Acute Myeloid Leukemia (AML). Here is what I learned and can share as I honor and applaud caregivers everywhere.
1. Be the trusted advocate. No matter the illness, the medical journey to heal is lengthy and complicated especially if the battleground is cancer. It is important to make sure that you – the caregiver – understands 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 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 on. 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.
Guy has worked for more than 30 years in the motion picture industry. His credits include Battlestar Galactica, The A-Team, La Femme Nikita and Children of the Corn: Revelation. Guy is also the author of Kiss Me Quick Before I Shoot: A Filmmaker’s Journey into the Lights of Hollywood and True Love.
Thanks for sharing your caregiving tips with us, Guy! Caregivers rarely get the support that they need to keep going day after day. Maybe one or more of the tips from our two lists will help.
Feel good and keep smiling! Pat