Thankfully, 2020 is now behind us. There’s hope for 2021, a new year we are all welcoming.
The typical New Year’s resolutions to eat healthier, exercise more, spend less, and the like, just don’t seem to cut it this year. Consider instead some novel intentions to get through the next few months, with an eye on your dreams for post-pandemic life.
Last year was a tough year of loss for many of us. As we start 2021 and work to move forward we propose waking each day with the intention of “doing good”. Do good for yourself. Do good for your family. Do good for others.
If self-care was not on your radar last year, let’s get it on there now. Research shows that one of the best ways to boost your spirit and enhance your health is physical exercise.
Be of service (or a source of sunshine!) to others. Pick up the phone, send a note, practice random acts of kindness, or volunteer. Find a way to give back in a way that is sincere and meaningful to you. Besides improving lives and/or the planet research shows that our actions also benefit our own minds, bodies, and souls, helping to sustain us during these times.
Take time to imagine a new chapter of your life after the pandemic. What do you want it to look like? What’s important to you? How do you want to “do good” for others? Life is forever changed – did your goals?
Something fun and quite powerful to create is a vision board. This digital (there’s an app for that! iPhone, Android) or physical reflection (think arts & crafts collage) using photos, images, words and phrases expresses the life you want to live. Make it yours and keep your vision board in your line of sight to look at it each day. It keeps the vibes humming so your aspirations don’t get lost along the way. It also helps you actually achieve them. How are you going to “do good” this year (or month – baby steps)?
Dream Big and Do Good in 2021.
Author: Jenna Frinfrock
When Bag It announced the creation of the virtual Tribute Garden this past spring, I knew I needed to show my support by paying tribute not only to my dad, but also to his oncologist. In 2009 my father was diagnosed with advanced stage-four multiple myeloma. It was a terrifying diagnosis, followed by weeks of radiation treatments, months of chemotherapy medications, and a final successful stem cell transplant. Through it all, my dad had the good fortune of being a patient of Dr. Michael Boxer’s at Arizona Oncology. Not only did Dr. Boxer patiently answer all of our questions, he took the time to know us personally and encourage my dad throughout his treatments in the years following his original diagnosis.
I truly cannot imagine what we would have done without the reassuring kindness and medical expertise that Dr. Boxer offered at every visit. Over the course of the last ten years, Dr. Boxer was instrumental in allowing my dad to beat back his cancer into remission and enjoy years of family gatherings. Because of Dr. Boxer’s care, my dad was able to attend family BBQs, celebrate holiday dinners and enjoy weekly zoo trips with his four grandchildren.
We all know that familiar adage, “it takes a village to raise a child.” I believe the same can be said when it comes to supporting someone with cancer. I will forever be grateful for the role that Dr. Boxer played in “our village” as he oversaw my dad’s care and treatment for ten years. It was a privilege for me to submit a tribute on his behalf when he retired from Arizona Oncology in June of 2020 after a very prestigious and inspiring career.
Check out the Virtual Tribute Garden here. It’s a place where you can recognize those touched by cancer.
It’s a wonderful time to show your thanks to a medical provider, caregiver or friend.
Caregiving Across the Miles
A long-distance caregiver lives an hour or more away from someone who needs care. Your support could take many forms such as connecting by phone, texts, emails and virtual visits, doing research, navigating insurance or finances online, managing the household from afar, coordinating in home care or services, visiting to relieve a primary caregiver, keeping extended family and friends in the communication loop, or even helping with expenses. Even if you can’t be there in person, your role is important and there is much you can do for your loved one no matter where you live.
Whether you are a new caregiver or have been in this role for some time, these suggestions can make life a little easier for everyone:
- Learn about your loved one’s specific cancer type (and/or other diseases), their medications and their treatments.
- Ask your loved one and any other caregiver(s) what you can do to help.
- Learn about your loved one’s specific cancer type (and/or other diseases), their medications and their treatments. This will help you to anticipate what to expect, enable you to communicate knowledgeably with your loved one, other caregivers, and the healthcare team, as well as assist in future decision making. Before hopping on to Dr. Google check out these tips on how to do research safely online and evaluate the credibility of the websites you source. The Resource Center on the Bag it website features a list of resources for every cancer type and any cancer topic.
- Ask your loved one and any other caregiver(s) what you can do to help. Communicating long-distance, even with text and email, is not the same as being there and can be even more challenging. It’s important that conversations are frank and clear. Actively listen to their stated needs and preferences and follow up with questions to be sure you understand. Together, create a checklist of what needs to be done (click here for examples). Be flexible. Keep in mind that your loved one’s condition will change and adaptations will be necessary as time goes by.
- Build a team of caregivers if it does not already exist. Take into account what everyone’s individual strengths, interests and limitations are when coordinating who will do what, from where and when. Your loved one should be a part of this important process, if possible.
- Get organized. Bag It’s My Companion Guidebook is a perfect tool to keep everything in order and in one place. Use it to store medical info, health care and personal contacts, reports/scans/labs, calendar items, insurance info, notes and questions for the doctor, track side effects and symptoms, and much more. The handy forms can be filled in by hand or use the fillable PDF format to print, save and update later, and share electronically with others as you see fit. Find the forms here. Maintaining this information and all the paperwork on an ongoing basis will make this an easy go to reference for caregivers and doctor visits alike.
- Offer to join your loved one’s doctor appointments virtually. The pandemic has greatly expanded the ability for health care systems to easily include caregivers by phone or video conferencing during in-person or virtual office visits.
- Gather information about local resources where your loved one lives. Programs and services that assist with in-home care, meals, medical equipment and aides, transportation and other needs may be available to fill some gaps or ease caregiving responsibilities of a primary caregiver.
- Being a long-distance caregiver brings its own unique challenges, stress and other emotions, particularly when for an extended period of time. Have your own support system in place and connect with people who understand what you are going through. This could be a caregiver support group, online community, a counselor or even a friend who has also been a caregiver.
More tips for Long-Distance Caregivers
- Consider a medical alert system if there is not a caregiver in the home at all times.
- New to caregiving? Consider attending caregiving training available through your local aging agency, AARP or other business in your local community or online. This specialized training can include helpful skills such as first aid, physical care and safety, assisting with activities of daily living, and other ways that you can be an effective caregiver in person or from afar.
- As a caregiver you may be eligible to take unpaid leave from your job to care for a family member under the Family and Medical Leave Act (“FMLA”). Learn about your rights here and check with your employer regarding potential coverage and FMLA policies related to your job.
- Check this list of apps available to help manage many aspects of caregiving.
- Pack a travel bag in advance and prepare your own household in the event you need to leave quickly for a few days to attend your loved one.
Helpful Tips for When You Visit Your Loved One
- Plan your visit to identify what you want to assess and what you hope to accomplish from a practical standpoint, but don’t forget to also set aside dedicated time to enjoy each other’s company. Do things that are fun and relaxing that are not focused on caregiving or a “to do” list. (These hours could be the ideal time to give the primary caregiver a much-needed respite for a few hours or day or two if you can swing it.)
- If possible, accompany your loved one to their in-person doctor appointment. Use the Bag It form My Appointment Summary Log form to note the appointment details and write down the questions to be asked (and answers received).
- During the appointment, get your loved one’s permission to allow the healthcare team to share medical information with you and get the necessary paperwork signed along with a copy for yourself. Exchange your contact info with the health care team and discuss the best method for future communication together.
- Hold a meeting with your family/caregivers. You bring a fresh perspective and may observe things that a primary caregiver does not notice day-to-day. Continue to listen carefully and be aware that other caregivers are also under tremendous pressure so emotions can run high. If you offer suggestions for more help, be specific about the types of support you are proposing. For example, having a home health aide come in each week, hiring help with yard work or other household maintenance, having groceries or prepared meals delivered, or arranging for transportation for medical appointments.
- If not already completed, start the conversations with your loved one and the other appropriate people to have a healthcare power of attorney and a durable power of attorney completed in the event your loved one becomes unable to speak or make decisions for themselves. While these topics can be sensitive and more than one discussion may be needed, executing these documents ensures that your loved one’s wishes will be followed. Advance health care directives are also a tremendous help for the medical team and others potentially making decisions on your loved one’s behalf if needed in the future.
- Take care of yourself during visits to your loved one. Get plenty of rest and set aside some time to recharge so you can be your best self with them. Remember you will not solve all the problems and have all the answers but your support, assistance and presence will no doubt mean a great deal to those you care about.
Additional Caregiving Resources:
Caregiving from a distance
Eldercare locator: Find local caregiving and support resources in your community
ASCO Answers Caregiving booklet
Family Caregiver Alliance Handbook for Long-Distance Caregivers
American Cancer Society Cancer Caregiver Resource Guide
AARP Prepare to Care guide
Family Caregiver Alliance Handbook for Long-Distance Caregivers
State by State Advance Directives:
So, how are you?
Let’s face it, months into life during a pandemic, everyone is struggling on some level. A Kaiser poll indicated that over 50% of Americans report that the pandemic and social-distancing are affecting their mental health. More people report that they are experiencing depression and anxiety. Emergency hotlines have noted over a 1000% increase in calls in comparison to 2019. If you need help, please get help.
According to the Centers for Disease Control and Prevention (CDC), the COVID-19 pandemic can cause strong feelings of stress for adults and children, including:
- Fear & worry about your own health & the health of your loved ones
- Changes in sleep or eating patterns
- Difficulty sleeping or concentrating
- Worsening of chronic physical health problems
- Worsening of mental health conditions
If you’re experiencing any of these, there are ways to manage your symptoms and cope while maintaining physical distancing.
Continued from Newsletter…
The National Alliance on Mental Illness (NAMI) offers several steps you can take to prevent this stressful time from impacting your mental health.
1) Maintain A Routine
If you’re not used to working from home, you may find the transition challenging. Creating a new teleworking routine will help you get into the right mindset, feel more productive and keep the boundaries between work and home from blurring. Bringing structure into your daily routine is key.
2) Take Reasonable Safety Precautions, But Don’t Go Overboard
Use only reliable sources of information, such as the CDC or Johns Hopkins University, to inform and make a plan for your health habits. Don’t let anxiety direct your behavior. Limit how much time you spend watching or listening to news that makes you upset.
3) Find Ways To “Get Going”
Now more than ever, you need to practice self-care. Practicing sound mental hygiene can help boost your psychological immunity. If you are prone to depression, you might be finding it harder to get out of bed in the morning, motivate yourself to accomplish chores or get started on a work project.
4) Try Not To Fixate On Sleep
The changes in your usual schedule, together with anxiety, can wreak havoc on your sleep. It might be helpful to listen to a guided meditation available on YouTube or one of the many meditation apps, such as 10% Happier, Headspace or the UCLA Center for Mindfulness
5) Stick To Consistent Meal Times
Eating only at meal times, rather than stress-snacking throughout the day, can also help you maintain your mental and physical wellbeing. Nourish yourself with healthy foods. However, it’s also perfectly fine to enjoy some comfort foods, like freshly baked cookies. Now is not the time to start a restrictive diet.
6) Follow Your Regular Mental Health Treatment Plan
Make sure you have an adequate supply of medication and take it as prescribed. Many mental health providers are now offering tele-therapy, either by phone or video, to comply with social distancing requirements. If you are dealing with cancer or a chronic illness, please keep connected to your healthcare provider by virtual visits or in person if safety permits (Bag It). Check with your insurer to see what virtual services they will cover.
7) Practice Mindfulness And Acceptance Techniques
Whether you use meditation, yoga or prayer, focusing your attention on the present moment, rather than worrying about a catastrophic, uncertain future, can help you manage your distress. One good introductory resource, among many, is “Mindfulness: An Eight-Week Plan for Finding Peace in a Frantic World,” by Mark Williams and Danny Penman. The UCSD Center for Mindfulness also has free, guided meditations and useful information about the practice.
8) Be Kind To Yourself
A vast body of research conducted by the psychologist Kristin Neff and colleagues has shown the value of self-compassion for coping with emotional challenges and adversity. To ease feelings of isolation, acknowledge your struggle with kindness, rather than self-judgment, and recognize that millions of people world-wide are sharing your experience right now.
We all know that staying physically active has many benefits for our health such as increased flexibility/balance/muscle strength, controlling weight, regulating blood pressure, digestion, improved mood, thinking, and sleep, just to name a few.
But did you know that getting regular exercise may also:
- Help you live longer?
- Ironically, reduce fatigue and increase your energy?
- Reduce your risk for developing some types of cancers?
- Reduce the risk of certain cancers recurring?
- Ease some side effects of cancer treatment?
We have so many gadgets to inform us of what level of activity we are doing down to the minute on a daily basis. We even get “scolded” if we are not moving enough! When these gadgets first came out many thought that was exactly what they were – just gadgets. Today, many feel these are lifesaving instruments. Use the great technology out there to your advantage and commit to getting fit!
Check in with your doctor for guidance on how to begin an exercise routine that’s right for you. If you have no health restrictions, gradually build up to 150 minutes of moderate physical activity per week (or 75 minutes of vigorous physical activity). Take it slow at first and if you miss a day just try again the next day.
Aim for a combo of cardio and strength training. (You can do strength training with or without weights)
Besides the obvious forms of exercise like walking, running, hiking, biking, swimming, aerobics, activities like dancing, gardening (digging, raking), household chores (vacuuming, mopping, washing windows, sorry!) or actively playing with children can be just as effective.
If you can’t do full 30-minute sessions some days, break it up into 2 or 3 sessions of 10 or 15 minutes each. It all counts!
Make it easy and fun! Change it up and do a variety of activities you enjoy by yourself or with a safely-distanced buddy.
Crankin’ up the tunes while you work will actually make you move faster and with more intensity.
Join us in our 2020 Get Moving for Bag It Fundraiser, Oct. 16-25, for a variety of activities to get you motivated.
Learn More and Register Here!
Let’s say the unthinkable happens.
You suddenly become hospitalized due to Covid-19 and are unable to communicate, make decisions for yourself or have a loved one by your side.
Preparation of your advance directives for health care is the best way to give voice to your wishes and what matters most to you. A healthcare power of attorney informs your doctors about your preferences for medical care and could give helpful insights to those you select to speak on your behalf. It’s impossible to account for all the possible scenarios and every potential long-term impact on your health from Covid-19. But even expressing what makes life worth living for you or the quality of life you don’t want to suffer later can guide the decisions made about treatments to provide and when.
If you’ve already put the appropriate documents in place and shared them with the right people, good job – but keep reading if you did that pre-Covid! Now is a good time to pull them out and reread them to make sure you are comfortable with your instructions in light of the pandemic. Do they reflect your treatment preferences no matter the reason for your condition or critical illness, or do you have definite ideas about treatments you do and do not want in the case of Covid? Are any changes needed to the named agents appointed to act on your behalf? Do you need to add back-up trusted agents in the event your appointed spouse/partner or other household members also fall ill?
Whether you need to complete these documents for the first time or an update is due, make this a priority today! Below is more information about where to find resources for your state as well as tools and resources to complete the process.
The Conversation Project
Downloadable life care planning packet for Arizona
Downloadable life care planning packet for Arizona: (Spanish)
AZ End of Life Partnership
Downloadable advance directives for 50 states:
POLST (portable medical order for emergency medical care)
Once the paperwork is in order, provide copies to the involved people in your life and also have a frank conversation with them about what’s important to you. While it may not be easy to talk about it, having the documents ready and sharing your personal values with them means everyone will feel more prepared and brings a bit of control and peace of mind – just in case the unexpected happens.