Finding Support as a Caregiver: A Special Section

When my first husband, Ahmad, had metastatic bladder cancer, people often said “let me know how I can help.” And while I appreciated their good intentions, I found it difficult to ask for the help I needed. The offers of help were typically broad and generic and I wasn’t sure how to accept them or translate them into practical actions. I never realized how busy a caregiver to someone with metastatic cancer could be. I took a leave from my job and could not have worked and cared for him simultaneously. Getting to appointments, filling prescriptions, managing pain, managing changing dietary needs and side effects, interacting with home visit professionals – these activities filled my days and nights. I needed help but didn’t know how to get it. Consider a website for caregivers I never did use a site such as Caring Bridge but I have heard wonderful things from those who have. If you have many family and friends nearby wanting to help, this may be a good option for organizing the good intentions of your army of supporters. We did not, however, have lots of people nearby. Family was mostly halfway around the world. Friends were spread across a geographic area spanning about 100 miles in all directions. So having a schedule for meal delivery, for instance, wasn’t really practical in our situation. In addition, harsh chemotherapy meant food needs and preferences could change unexpectedly and often. Be specific in your requests - think about what would help you most People want to help but they need your guidance to know how they can help. In your caregiving, consider the tasks you do every day. These likely range from the mundane such as laundry to the important such as researching clinical trial options. Then think about which tasks could be outsourced: laundry, probably yes. Research might want to be one you do yourself. (Unless an offer of help is from a family-member oncologist, for instance!) Maybe a family member or friend could come over and do laundry twice a week. Or maybe they could pay for wash and fold and both pick up and return your laundry to you. Be specific in your requests. And do make requests. I didn’t do this and I realize that I could have made my life easier by outsourcing the mundane. You might also consider having someone “on call” One of the things I found most frustrating about caregiving for a patient with metastatic cancer was that our needs were constantly changing: sometimes daily, sometimes hourly. It was often difficult to get the kind of help I needed at the moment that I needed it. For instance, maybe today the patient’s pain is especially severe and he or she needs help getting out of bed. And maybe you are not strong enough to help. Having someone “on call,” either at your home or nearby could be very helpful in those situations. They could just hang out and visit if help is not needed or they could work on the mundane “outsourced” tasks but be present should you need specific help at a specific moment. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Caregivers are starting to get more attention—in the press, in research, and in discussions about healthcare and illness. And I am both happy and relieved to see this. Many degrees of caregiving What I notice, though, is that we tend to talk about caregiving as a monolith—lumping it all into one giant, generic category. I hope that the next iteration of conversation will distinguish the many types and degrees of caregiving. In the past, I have heard people discuss cancer with a capital “c,” meaning the most serious, worst-case scenario cancers. I think this concept is relevant, too, for caregiving. It is crucial, as we discuss caregiving, to identify what types of situations and challenges we are referring to in a given conversation. Light caregiving At one end of the spectrum is what I would describe as light caregiving: occasionally taking a family member or friend to doctor appointments or the grocery store. Maybe this simply involves functioning as a driver. An escalated level of caregiving would be accompanying the person to the appointments and maybe even participating by taking notes or asking questions. Maybe the appointments are very frequent because of a complex medical condition. All of these activities encompass caregiving. Great levels of caregiving might be hiring professionals and arranging for care at home. Or even providing some of that daily or round-the-clock care. Spending large chunks of time in the hospital This is the point at which a person starts to become a caregiver with a capital “c.” When my husband was first diagnosed with bladder cancer in 2011, I accompanied him to a few appointments and spent the most intense time caregiving that year when he had surgery (a partial cystectomy) was smooth and free of complications. Still, it required a two-night hospital stay, and I was at the hospital most of that time. But then things went back to relatively normal life and we believed the bladder cancer was under control. But in April 2013, a series of events began that resulted, in May, in a metastatic diagnosis. Even at that point, things seemed reasonably under control. Until suddenly, they weren’t. The situation escalated quickly He had pain that developed and accelerated very rapidly. He was jogging in April but needed a walker by July. I had taken some time off work with the idea that we would take some short trips and enjoy some leisure time between treatments and appointments. This did not come to pass. The situation escalated so quickly. And I rapidly was immersed in very intense caregiving challenges. Getting to a doctor’s appointment could be a half-day project because of his pain and thus, impaired mobility. Even with a disabled parking placard, the parking space often wasn't close enough to the door. Struggling with administrative details He was on heavy medications — narcotics to manage the pain. This was before an opioid epidemic exploded in our national consciousness. I spent a lot of time struggling with the administrative details crucial to filling the prescriptions timely so we didn’t run out but not too soon so that the pharmacy and insurance would reject them. A long list of specialists We had visiting nurses and physical therapists and occupational therapists. And our energy was often consumed with tweaking the pain drugs to the optimal level. New specialists kept getting added to the roster of regular appointments: palliative care, blood thinning/clot management specialist. Lab visits were constant to measure the effect of chemotherapy on things like hemoglobin and kidney function. This is what I think of when I think of being a caregiver. This was my most intense caregiving experience. But when I drive my Mom to the grocery store these days, that is also caregiving. I think our public conversations just need to be mindful and respectful of the many degrees of caregiving. That will help us support caregivers appropriately. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"],During the course my chemotherapy and immunotherapy treatments to treat my bladder cancer, I did have caregivers who spent a lot of time with me during those difficult times. I wanted to share some tips with those soon to be caregivers or who might be taking on the caregiver role now with a someone facing bladder cancer treatment. Be aware of emotional needs I think it’s essential for the caregiver to be aware of the emotional needs of the bladder cancer patient. I wanted things to be as "normal" as they could, yes I was going through treatments, and there were side effects from the therapies, but I still wanted to maintain my daily routine and dignity. I was also more open to talking about my journey, which helped, but as far as talking about my feelings, it was more difficult for me. Caregivers should understand that some people will be willing to share more than others and when they do decide to share, be there to listen. Be flexible The other thing is being flexible. As a caregiver, and depending on the needs of bladder cancer patient, caregiving can range from everyday tasks to preparing meals, grocery shopping, housekeeping, and managing side effects. For me, during therapy weeks I needed help with cooking meals, grocery shopping, and housekeeping duties. Most weeks I was too fatigued to do those things, and keep in mind as you go through chemotherapy or immunotherapy the treats are cumulative, so the fatigue builds up over the course of treatment. Communication is essential Communication between the cancer patient and the caregiver is an essential. I know for me, making sure to communicate what I needed and even asking my caregivers to accompany me to doctors visits and keeping notes of the conversations was important. A lot of times before appointments, I would have my caregiver write down questions I wanted to ask the doctor so that I didn’t forget any questions. Most times my caregivers would remember the questions before I did and ask them, which was a great help. Take care of yourself Another thing I was mindful of with my caregivers is reminding them to take care of themselves. When I was having a good day and feeling good, I wanted my caregivers to take the day off and go something they wanted or needed to do. I have been in the caregiver role and know how crucial it is to get away and spend time friends or someone I could talk to about the stress I was under as a caregiver. When you’re the caregiver, it easy to ignore your own wellbeing. Be sure to take care of yourself, and if there are early signs that something’s not right, make an appointment to see your healthcare provider. Editor’s Note: With heavy hearts, we regret to inform readers that on February 27, 2021, Curtis passed away from stage IV bladder cancer. Curtis’s advocacy efforts and writing continue to impact many. He will be deeply missed. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] I’ve shared nine pieces about the beginning of my grandfather’s journey with bladder cancer. The scary times, hospital issues, rehab, coming home and life adjustments. To be honest, I’m not the one who has been impacted the most since he came home. It’s been everyone who lives in the house, which includes my grandmother and both of my parents – my mom takes the brunt of the caregiving duties. It only seems fitting to end this series with getting HER perspective: I don't want to be a caregiver, but I am I AM A CAREGIVER! There, I said it. I don’t want to be a caregiver or even like being one, but a year and a half ago my now 83-year-old father had his bladder removed due to cancer. He & my mother moved in with my husband & I after Dad was diagnosed. I never wanted to be in the healthcare profession. As a teen, I was a candy striper at the local hospital. It convinced me that is was a career I didn’t want to pursue. My father’s mother was a registered nurse back in the day when nurses wore white tip to toe, white hat, white dress (no pants), white stockings complete with garter belt and white shoes. Not for me! Not even interested! Then, dad got cancer, and I had to change. It was hard enough having my parents move in with us, but we weren’t prepared for everything that followed. Driving, time off work, and rearranging schedules We live in small-town U.S.A. and Dad’s urologist/oncologist was an hour’s drive away. Sometimes, when he had blood in his urine, we would take him to the local hospital, but they were limited in how they could help him, so we would make the hour drive to his doctor. After a year and a half of this, we finally got a urologist in our town, whom we like very much but his resources were limited also. The time had come when Dad’s bladder had to come out, and he had to be referred to a specialist in the big city which was over an hour away. That meant more driving, more time off of work and rearranging schedules and appointments. It became a group effort for my family. He didn't recover well from surgery Dad didn’t recover well from surgery or for a while afterward. His ostomy was fine. He developed a terrible case of Sundowning, which lasted for about six weeks post-surgery. We had no idea what Sundowning was, but the nurses did! It caused dad to battle us, pull cords and lines that he shouldn’t and talk to people who weren’t there. After a week in the hospital, he went to rehab for six weeks where he just slept and barely functioned. There were a lot of urinary accidents, as well while we were all learning how to deal with an ostomy. He finally started to get better when he came home and could be with his cats. We have to laugh Once he started to get better, he was determined to be self- sufficient. He learned to empty and change his own ostomy bag. He was also tired of sitting around the house so he would walk down our long drive-way to get his newspaper. That was his physical therapy. It was almost six months before he could drive again, but he doesn’t drive far, just to Walmart to get cat food, to the Post Office and home again. He can microwave his own breakfast and lunch but strolls into the kitchen every evening at 5:30 to see what’s cooking for dinner. My Husband and I have to laugh at the things that used to drive us crazy. If we don’t laugh, we will start crying, and there IS crying in caregiving. Blood and pee don’t bother me as much anymore. I guess I have gotten used to things that used to disgust me. You don't have to fit into a "caregiver mold" “Caregiver” is not a term that was used when my grandmother the nurse was alive. It means many different things to many different people depending on your personalities and circumstances. Some people accept the role willingly and some reluctantly. I am the reluctant one. Seek out support when you need help, even when it seems like a small request. Ordering take-out food or sneaking out of the house for retail therapy doesn’t make you less of a caregiver. Let your parent do what they can for themselves when they can. I don’t know what each day will bring or how much longer this will go on. I have siblings that don’t help out at all. That is the elephant in the room. A lot of caregivers have that story, but I have other siblings that do help out and as a result, I have grown closer to them. Don’t feel you have to fit into a certain “Caregiver Mold”. You have a caregiver story that is uniquely yours. I would love to hear it. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] A bladder cancer diagnosis, for yourself or someone you love, is overwhelming. Even so-called good news (on the cancer spectrum) of an early stage diagnosis does not feel good. It’s hard not to be angry. Sometimes anger is most intense at the outset, sometimes it compounds over time, or perhaps it’s a chronic, low-grade ever-present feeling. Anger is normal This is normal. I think there is often too much pressure on patients and families to be positive. That’s not to say it is not immensely valuable to be positive – it can certainly help us feel better moment to moment. But positivity that entirely squelches the normal sense of anger can, I think, backfire in the long run. A bladder cancer diagnosis is an onslaught of new words, choices, data, coming at us rapid fire. While trying to process this practical information, we are often stunned at the reality that cancer has infiltrated our lives. I experienced a churning background loop of questions in those early days: Why my husband? What caused this – his habits are healthy? Who can understand what this feels like? How do I keep functioning and get help but not pity? How do I stay hopeful and helpful for him? Pause If you find yourself (or a family member) in the early days of a bladder cancer diagnosis, pause for a moment to reflect upon just how much information has come at you. And how many questions have cycled again and again through your mind. And how overwhelming all of it can feel. Try to pinpoint whether and how often you feel angry about the diagnosis. And then give yourself credit. You are here. You are in the moment. You are doing the best you can to make sense of it. You may not like it. You may be furious. But you are finding your way through as best you can. There is so much in life we cannot control, and cancer is a very big one. Allow yourself to express anger Allow yourself and the patient (if you are the caregiver) to express anger in an appropriate context. This could mean attending a support group, meeting with a therapist or writing a letter to cancer that no one will ever see. It can be as private as is right for the individual. But being allowed to express the anger is an important key to functioning well day to day. We do what we can Beyond that, we do what we can. From a practical perspective, this may mean gaining a basic understanding of the diagnosis, the medical team’s role, the treatment options, and the likely side effects. From a self-care and patient care perspective, this may mean pinpointing what rituals and activity will help both patient and caregiver stay sane. Knowledge and action can often feel like good substitutes for control. Rituals and activities to stay sane Here are some ideas: Cancer-Free Days on a regular basis (no medical appointments, no talk of cancer, doing something fun) Identifying mundane work that can be outsourced to friends, family or hired help Exploring soothing activities specifically for patients and caregivers at a cancer center or nonprofit such as art therapy, yoga, meditation, writing, or whatever might appeal to you Planning, to the extent, a short trip or outing that everyone can look forward to – it might be a day trip, a movie, a special meal – anything that will be a treat [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

Finding Support as a Caregiver: A Special Section

How to Ask for Help As a Cancer Caregiver

Caregiving with a "C"

Tips for Caregivers

I Am a Caregiver!

It’s OK to Be Angry – Just Try to Channel It Constructively

A Cancer Caregiver's Reading List

Two Caregivers Share Their Stories

Five Helpful Tips for Caregivers

Dear Husband (or Wife or Partner)