by Rob Wise
Here we are, middle of March 2021 and the last 365 days have provided time for all of us to reflect the events of the global pandemic. I remember this time last year where we had just finished up an important meeting, and we were talking about this new virus making its way around but not giving much thought to a nationwide shutdown. Well, 6 hours later we get the call that we are shutting down, and did not know for how long, but the number of cases is growing at an exponential rate, what we thought might be a week or two, turned into months and even as a lot of us have returned to work and somewhat of a normal life, for cancer patients and their caregivers this last year has been incredibly difficult. Delayed or rescheduled appointments and surgeries, risk of Covid to an immunocompromised individual and the fact that many people have had to work from home or may have lost their job has had a tremendous impact on the patient and the caregiver.
I wanted to open with a reflection on the last year as not only do I work directly with the patient, but I do also have the privilege of getting to know the caregivers of these patients. Seeing how the home dynamic has been so different and I do hear so many struggles from the caregiver perspective, including but not limited to financial strain (missed work, rising cancer care cost), transportation issues, working from home where there is no break from work and being the caregiver, increased life stress, etc. Caregivers often fall to the wayside when their loved one is diagnosed with their cancer. Yes, the importance of helping your loved one should be the utmost priority; however, part of the patients care program is a complete team of people that help that patient walk along their cancer journey including the healthcare professionals and the family of that patient. I hear so often from the caregivers that they feel lost, and do not know what role they should play in the health and wellness of their family member.
Over the last year I have collected many stories and recommendations from the caregivers of our patients that have greatly helped them get through some very challenging times. If you know a caregiver or are a caregiver yourself, I hope these 10 tips help you find more ease in your life!
- Know the diagnosis– Having a complete understanding of your loved one’s treatment and/or surgeries and all the potential side effects they may experience will help prepare you both mentally and physically. Side effects vary from cancer to the treatments offered. Knowing that a certain chemo will likely cause intense vomiting, or a mastectomy may cause a severe limitation in range of motion will help you be better prepared. Here is a great resource for chemotherapy treatments and their side effects: Chemotherapy Resource
- Reach out for help- Unfortunately, we are not superhuman and do not have superpowers. Our bodies were not meant to be repeatedly stressed and the last thing you will want is to be laid up sick and fatigued. Reach out to the rest of your family members, your friends, your church, your neighbors or even the hospital if you find that you find yourself overwhelmed. Sometimes it is scary to ask for help, but you will find once you reach, you will feel so much better.
- Stress management- This goes along the lines of the last one in combating the stress in your life. It is never ok to be overwhelmed and being in the fitness industry I have found tremendous value in my physical health by “detoxing”. This is done by doing yoga, gentle stretching activities, walking my dog, massage therapy or just going out with friends! Deep breathing exercises are a quick simple way to help you regain focus and take a little bit of the edge off. Find something that you will enjoy!
- Find support in support groups- A big help I have heard, especially through the pandemic have been support groups. It is difficult for caregivers as there really is not a support group just for caregivers in most areas. What are patients have said is that within their cancer support group, they have arranged for all THEIR caregivers to meet in a separate room (or separate virtual call). Doing so allows for the caregivers to express and vent their feelings, but also share tips and tricks to what might work to get through their day. The best place to start outside of an internet search is checking with your local primary care provider. Some of the rarer cancers, our patients and caregivers here have found national groups that they were able to connect with virtually!
- Be patient- The spouse of one of my patients jokingly said their experience taking care of their spouse while undergoing treatment was like taking care of a new puppy. Although in jest, the comment did have some merit behind it. When you have a new puppy, you must realize they are learning how to adjust to their life right now, and there will be a lot of frustrating moments. As a caregiver you may have to feed, bathe, and change your loved one. You must step back and realize that there is so much beyond their control at that moment. Be patient, they will move slow, they will get through their sickness and their bodies will heal after surgery. This is a process that can take some time though.
- Meal prep- Going through a cancer diagnosis and treatment, you will likely find difficulty in your loved one’s appetite as things that once tasted sweet, may taste bitter, once sour is now metallic. Rebecca Katz has an excellent book and is a resource for food prep for cancer patients. Check her out! Here is a link to her website that provides a guide for helping fix broken taste buds: Fixing broken taste buds. Meal prep is important for the caregiver, not necessarily making their food, but YOUR food, in advance. Having a long stressful day with work and caring for your loved one, the last thing on your mind might be making a home cooked meal. I have found a lot of success in buying glass storage containers that can hold a pre-portioned meal/casserole, and if I make it for a week in advance, I throw in the freezer and bring it oud the morning of to thaw! It will be good to warm up by evening time. This is a huge time saver!
- Show love and support– I was shocked when I heard this, but a caregiver I knew said that their husband was battling a very advanced lung cancer diagnosis and was not given much time to live. He was extremely hateful, but she said she had to step back and put herself in that situation where you have been given what is essentially an expiration date. Instead of yelling back, she would go out and buy him his favorite meal throughout the week, every Friday would play a classic movie that he used to watch and love. The small things in life can make a big difference not only to the patient but also the caregiver. Her husband started sharing little love notes each morning after she started doing that, showing how appreciative he was of that and instantly she said her stress in life went away.
- Prepare for anything– Hope is a powerful word when someone you love has cancer. No matter how much you prepare through the cancer journey, not everyone is able to make it through their diagnosis. When you encounter the loss of a loved one, grief can take an overwhelming toll on a caregiver. Some of the best advice from patients I have heard is having a “worst case scenario” in place. Knowing the wishes of the loved one after they pass, any property and bills that need taken care of, and anything else you can think of that might need to be addressed as a worst-case scenario. This could even mean transferring the patient over to a hospice care setting. No one will wish for the worst case but being prepared in the event will make the transition that less stressful.
- Planned days off! – You are not taking time off from taking care of your loved ones but our caregivers here at Maple Tree say they have great success in taking intentional days off. Usually care of the patient is taken over by a family member, neighbor, friend, or home health aide. This can be weekly one day, bi-weekly or even once a month, but it allows the caregiver the chance to go out and enjoy time to themselves. It is not selfish, its self-care!
Exercise! – Ok, this one is a no-brainer at Maple Tree, as we are engrained in exercise. Our advice to our patients also applies to our caregivers. Your loved one will not be able to maintain a high intensity pace that you might be able to so start with slow progressive activities. From our caregivers here, the best advice is walks to the end of the driveway several times, then to the end of the street and eventually around the street. Your health is just as important as the person battling cancer. Of course, you can exercise on your own, and you should incorporate physical activity daily, but exercising with the individual battling cancer will do wonders for both their mental and physical wellness. Without you moving with them, they likely will not want to move either! Exercise is medicine!