Happy Monday, my friends!
(Yeah, I know, it’s weird, I said “Happy” Monday…it’s not necessarily an oxymoron…hear me out!)
I was always the kid who enjoyed the first day of school. How about you? The first day of vacation was pretty great, too!
There is great power in “firsts.” We are almost supernaturally (or superstitiously!) drawn to the gravitas of beginnings.
I remember very clearly making a circle of hands around my mother when she began her first treatment: my dad, some close friends, the nurses at the infusion center. Some of us prayed, some of us stood silent, some of us spoke whispered encouragement. I’ve heard similar memories from many patients and caregivers. No matter the words on our lips or in our minds, the sentiment is the same: there is great awe when we begin an experience, a journey, a season.
I’ve always thought that part of the particular joy unique to a beginning is the ability to cast off any detritus from the previous experience, journey, or season. If there is baggage or fear or angst (or anything else unpleasant) that is keeping us from advancing into the new moment, the changing chapter gives us permission to leave behind whatever we do not need—whatever will not service us as we move forward.
In that way, a beginning is also a chance to reset.
A couple of careers ago, I was a professional actor. I still do the occasional play, when the schedule is calm, and I recently closed a show with my small community theatre group.
During rehearsals, when there is a problem in a scene, or a snag in a set change, there is always one perfect solution: we reset. “Reset” is shoptalk for going back to zero: we literally re-set the scene (actors AND scenery), start the scene over, fix the issue, and then move on with renewed confidence. Like a bone that breaks and heals stronger at the point of fracture, a scene that has been reset usually turns out much better and smoother than it was before.
So, I’ve been thinking lately about the significance of beginnings and resets. That brings me back to Mondays…
Mondays are the calendar’s “firsts.” For many of us, it’s the first workday after a (too-short) break. For others, it’s the first schoolday of the week. For most of us, it’s the first day we can expect business-hours productivity after the hectic rush that is (usually) Friday afternoon.
And, for all of us, it’s the loop-point of the week. It’s the marker of how we count weeks backward or forward, between commitments and appointments.
So, it’s a built-in reset. It’s a page-turner. It’s a blank slate. It’s a chance to start over: whatever didn’t get finished on Friday didn’t destroy us, and whatever has to get finished this week hasn’t yet come due.
For those reasons, I love Mondays. They’ve become my mini-reset. From Sunday night into Monday morning (I’m an incurable night owl; I’m too old now to deny it!), I find poignant peace in the tiny resets I can enact around the house. I help Monday arrive with its blank slate by creating all the blank slates I can think of: leveling off the laundry pile, clearing the kitchen counter, emptying the sink, running the dishwasher, taking out the trash, refilling toilet paper rolls, cleaning cat boxes, loading drink cans into the fridge…
You get the picture.
I cannot emphasize enough how precious that time has become to me in the years I’ve been helping my parents. I now look forward to Sunday evening, which, in itself, is life-changing. Instead of fearing Monday morning’s potential onslaught of “stuff” to deal with, I try and push last week’s dirt into the bin (or under the rug, ha!) and set the stage for the week on my own terms.
I don’t know why waking up to a sink full of Friday’s dishes on Monday morning is so soul-crushing (knowing the "why" is above my pay-grade), but it IS. It just is. At some point along the way, I learned this: I learned that the sink full of dishes represented everything that did not get “checked off” last week, and that it now stood between me and everything I needed to accomplish THIS week.
This was one of the most satisfying epiphanies I ever had, my friends, because the problem was so easy to fix.
We can’t change our circumstances, and that alone is the source of most of our stress as caregivers. There is so much about our current situations that we would change if we had the chance, but since we can’t, we need to channel that desire for control into the mountains we CAN climb.
And that laundry pile over there is just the right mountain.
In my time as a caregiver for my parents, there is one theme that haunts every interaction and every decision: the status of the relationship between the folks having the conversation.
(Well, duh, Danielle, because that theme determines most things in life, doesn’t it?)
(Sure, Inner Monologue, you are correct, but I’m the one writing this, so shush!)
Where was I?
Oh, right.
Relationships.
I know there are stacks and stacks of scholarly works written on the complex navigation of relationships in a caregiving framework, and I am not qualified to weigh in on that ongoing discourse. I also don’t mean to make you, my friend, sift through a tome. I am, however, qualified to opine on my own experience, and to put these thoughts out into the universe with the sincere hope that they can somehow be helpful to someone else who comes along and is going through a similar hardship.
So, here are my “Top Five Relationship Observations” involving caregivers, caregiving, and the related (pun intended!) situations we might find ourselves in.
1. “Let” your loved one be the person she/he is.
I don’t like the word “let,” because adults should not hold reins on other adults, but for that exact reason, “let” fits here. In our rush to make sure our person is cared for and content, we can often get quite pushy. I am extremely guilty of this. I have to stop myself on a daily basis from “parenting” my parents. Granted, I am not currently a caregiver of people with mental incapacities, so my tasks are limited to physical and household assistance, meaning my “parenting” of my parents should be extremely limited. The primary goal in everything we do as caregivers should be the preservation of the inherent dignity of our person. I need that tattooed on the inside of my eyelids. We have the best of intentions: we always think we are working toward that goal when we schedule the doctor appointments and make the phone calls and order the lunch and pay the bills, but consider: are we putting things on our plates that our person would rather keep on their own plates? Are we infringing on their independence, vitality, or sense of identity? Am I assuming a responsibility unnecessarily and/or without being asked (or at least without noticing it isn't being taken care of)? Keep asking yourself this.
I am a person who needs near-constant reminders. The most profound reminders have been the simple moments when my parents are still my parents: mom sitting up all night looking after me when I recently had food poisoning; dad meeting me in town when I had car trouble; mom helping me methodically check for ticks when I freaked out after an outdoor fall last summer; dad jumping on the phone to save me from a really mean customer service rep; mom singlehandedly planning a party for 300 people without breaking a sweat; both of them helping me when my cat had a serious injury. The list is miles long. My point is: I may be their caregiver, their homemaker, and their advocate. But they are my parents, and always will be. Acting otherwise, or pushing them away, is nothing less than insulting and indignant. (Even when caring for those with mental incapacities, the primary goal should be the same: the preservation of their inherent dignity).
2. Relatedly: “let” your person maintain their space. Their territory.
As much as you can, avoid the natural tendency to become the “alpha” on their “turf.” Since my mom’s diagnosis, and the subsequent aggravation of my dad’s chronic health issues, I have been helping them maintain their home. It is firmly their home, indubitably. I am 32 years old and have an apartment with my husband, even though I may only see that apartment a couple times a month. I’m a big girl (in more ways than one!). But here I am, telling my folks where the laundry and dishes and trash bags “should” go in their own house. Ugh, somebody stop me! WHY do we do that? I know I live here a majority of the time, but it is NOT my “turf.” I am here to serve, not to have the circumstances serve ME. A dear friend once said to me that it’s hard to be told how to do a chore when the person telling you what to do is not physically able to do the chore. I agree; nobody likes to be micromanaged. But, frankly, we need to get over ourselves. Seriously. There is no world in which it is okay for me to be telling my mother where her plates should be stacked, even if I’m the one stacking them instead of her. I may spend most of my nights in my parents’ house, but I am not the boss. This is an ongoing internal struggle for me, trust me.
In many many many ways, part of signing on to be a caregiver has got to be the assumption of humility in order to willingly help your person run his or her life on HIS OR HER terms. That should be our motto. We are helpers, we are advisers, we are advocates, we are cheerleaders, we are housekeepers, but we are NOT captains. We can be captains when the actual captain wants us to take the helm, but we can’t take the helm ourselves. That, my friends, is mutiny.
3. Your relationship with someone is NOT automatically the same as your loved one’s relationship with that person. When dealing with business on your loved one's behalf, you must act in accordance with your loved one's relationship preferences and NOT your own.
This one is tricky; let me explain via example.
a. My husband and my mom are both turf-sensitive people (see above). They both crave their “lone wolf” time, as I call it. Meanwhile, my dad and I are usually up for whatever adventure brings everyone together, even in the same room. This leads to drastically different preferences existing under one roof. Even though my caregiving responsibilities tend to mean I stay 80% of my time with my parents, that doesn’t mean I get to live my life out of their house. My husband and friends are always welcome, of course; in fact, my parents have extremely graciously made it clear that they are family and do not need “permission” to be around. However: that does not give me carte blanche to dictate who is in my parents’ territory at any given time. The burden is appropriately on me to limit interactions that are solely for my benefit, so that my parents' privacy and time are respected within their own walls without them needing to defend their own preferences.
b. I may not want to have lunch dates with the same folks that my parents do, and vice versa, but because we are all in this together and are usually chauffeuring and assisting each other when running errands, we all go to the same lunch dates, and we enjoy them for the team.
c. Over the course of the years of mom’s treatments (and dad’s too, for that matter), we have all forged various friendships with the members of the medical team. However, my friendships with my parents’ HCPs are not the same as my parents’ own friendships with their HCPs, and that is okay! You may be confused when your loved one has a different reaction to a certain person on the medical team than you do, and it may feel super important to analyze that different response because, after all, the stakes are high. These relationships are crucial to your person’s well-being, so there is immense pressure to get them “right.” But, consider: the members of the medical team are human, just like us. They have friends and acquaintances of different degrees, just like us. So long as your person is feeling heard, cared for, listened to, and taken seriously by his/her medical team, you shouldn’t feel obligated to also be any HCP's best friend! Conversely, if you feel you are the one who has bonded in a friendly way with your person’s medical team members, and your person’s treatment has not been affected by this, encourage your person to let go of any self-imposed pressure to feel the same way you do!
4. Your priorities are not your person’s priorities, and vice versa. Try your best to let this create compromise, not chaos.
Hoo buddy, do I struggle with this. One example comes screaming to mind: I am not a neat person. I somewhat thrive in clutter and asymmetry. My mom, on the other hand, is the most meticulous decorator/organizer/arranger you have ever met. She’s amazing: if you need to streamline your space, she’s your gal. The storage room in her home looks like a department store warehouse. She is not a fuddy-duddy, and I am not a slob; we are both fun and funny people. We are not like the Odd Couple; rather, we are more like a before-and-after photo shoot of a Kon-Mari project.
Unfortunately, this means that clutter is a source of stress for her; concurrently, organization projects are a source of stress for me. Why? Essentially, because we have totally different priorities with how to spend our time. She would much rather we tackle the backlog of homemaking tasks that have been put on the back-burner since her diagnosis; whereas I would rather focus on just about any other shorter-term task (a dear friend of mine will read this and suggest I mean laundry, and she isn’t wrong!).
Essentially, mama and I have different aesthetics. The environment that calms her requires work that stresses me, and the work that invigorates her creates a hierarchy of tasks that I do not prefer.
So, where do we go from here?
I think the best we can do is tackle both to-do lists the same way we’d tackle any to-do list: gradually, in chunks. Baby steps. The key? Remembering that priorities matter because the PERSON matters. Their life, their terms. Your life, your terms. Even when they are at odds. If you can’t do “one or the other,” then you must do BOTH.
Compromise. Not chaos.
5. Your experience with lung cancer is not the same as your person’s experience with lung cancer.
I need this one taped to the bathroom mirror. They are intertwined; they are both important and valid; they are both necessary for purposes of personal growth and understanding and coping and advocacy.
BUT: THEY ARE NOT THE SAME STORY, and should not be treated as such. You will not answer questions about lung cancer the same way that your person will answer questions about lung cancer, and vice versa.
AND: one story is not wrong. They are BOTH TRUE, at every moment in time.
The patient is not always right because he or she is the patient; the caregiver is not always right because he or she is the caregiver. The primacy of each party over his or her own life is the only primacy; everything else must be negotiated. Other than that primacy, there is no hierarchy, because everyone involved in the situation matters equally. I know that sounds odd, since we often feel that much of our caregiving experience involves sacrifice, but consider: you made the choice to assist your person. None of us chose lung cancer, but we chose our response to the situation. You chose to marry your spouse; you chose to come home when your parent was diagnosed; etc. In some way, shape, or form, you chose to join the team, whether before or after diagnosis, because you LOVE the person with the diagnosis. Acting on our love for another person is always a choice. While caregiving may be a dramatic version of that choice, it is still a manifestation of the same motivation: we love the person, so we act like it. Do not confuse the involuntary nature of the diagnosis with the voluntary nature of our response to the diagnosis. So: no one member of the relationship is more important than the other, even though we make decisions to sacrifice certain personal comforts or preferences when one member of the relationship is in greater need than the other. We are a team.
Perhaps, at the end of the day, that’s all we need: to remember that we are on a team and that the cancer is the opponent. Our person is still someone we love and who loves us, so we can all take our power back by focusing on keeping our foundational relationships strong and not allowing the circumstances to confuse our motivations. Love got us into these relationships in the first place; love led to our decisions; and love can carry us through the dark moments.
In 2013 started with pneumonia but wasn't getting over it, Dr. wouldn't give up something just not right he kept saying. Sent me to a pulmonary specialist who found a spot on my right lung. Immediately set up oncologist, surgeon & hospital within 7 days I was laying in the recovery room with minus -one lung. Come through with flying colors, home within 3 days, thought to myself piece of cake! Yeah wrong answer, started chemo 3 weeks later and within 24 hrs I was back in hospital dehydrated & sicker than a dog! Not going to sugarcoat it the next 4 months was hell! After that I refused radiation, oncologist wasn't happy, I didn't care. As of October 20 it has been 5 years & I was stage III B so don't believe the statistics, just never give up! and fight!
This story is about my encounter with cancer, which happened in 2014. I had a near-death experience, and was rushed to Kaiser Zion medical facility in San Diego, CA. My doctor, Dr. Tomssi met me in the ICU and let me know that my body was struggling with issues regarding the bowel. I was excreting dark colors, almost purplish in color, which indicated blood. I had lost about four pints of blood and it would have led to death. I think God saved me from that near-death experience. In February of 2014, Dr. Tomssi found evidence of cancer from lab tests and let me know about the results. Of course, I was very upset, I believed that my future was near its end. I was in shock, and to add more to it, I was required to use colostomy bag, receive radiology for chemo. All in all it was a shocking experience, and I naturally rejected the idea, because it was so uncomfortable. Dr. Tomssi encouraged me to explore those options because it would save my life, and prevent the cancer from increasing its stages. Dr. Tomssi mentioned that he had found something on my right lung that could be unstable later, so I should consider preventive measures. Dr. Tomssi encouraged that I lead a stress-free life and explore healthy lifestyle to prevent the stages from increasing. I naturally agreed. I had gone into bouts of depression and Dr. Tomssi’s office had tried to reach out to me for appointments and follow ups, to which I neglected. At one point I gave in and went to see the doctor, Dr. Tomssi was very humble and gave me positive spirits where he encouraged me to get a check-up for any cancer indications. Two days later the office reached out to me via phone and told me that I had indications of cancer in the rectum. I decided to proceed with radiation, chemo, and mental health counseling.
I had regularly attended chemo therapy and saw Dr. Zimmer for the process, but my wife was controlling, and did not agree to the entire process. She did not believe the therapy would help fight cancer, my wife had the family move to Virginia then in Wisconsin during the process, so I lacked stability and support from home. My mind and body was equally weak and it felt like I was always in a body of water, my memory was always lapsing. My memory went away as did my body, it seems to be about sixty percent loss. In February of 2019, I moved back to San Diego, and Dr. Zimmer was my doctor again, and we had a scan again. It turned out that my cancer had progressed to stage four and instead of one spot, I now had six spots. I was encouraged to sign up for the LifeLine Mentor program and I was assigned with Melissa Crouse who is very humble and encouraging to me. My family is all very worried about me and is grateful that I have this kind of support from different agencies. This is especially important seeing as I had lost my son not too long ago due to suicide as a result of PTSD from the armed forces. I value the support I get from LUNGevity.org, and that place is where I feel at home, and safe.
My story begins in May of 2013. I am a high school special education teacher and for weeks I had a nagging but dry cough, I wasn't worried about it at all as I was running 3 miles a day, just completed a 5k road race and was very rarely sick. I finally saw my primary care physician who put me on a Z-pack and I went back to my normal life. A few weeks later since the cough had not gone away, I went back to my doctor who gave me a prescription chest x-ray, which I immediately threw on the passenger side of my car and forgot about it. Fast forward 2 weeks later, on a whim I was passing by the x-ray facility and decided to run in and get and a chest x-ray. The next day my doctor called and said he saw something on my lungs that he didn't like and was pretty sure it was cancer. A few days later a bronchoscope was done, and as I was waking up from it I heard a doctor use the word malignant and I knew he was talking about me! Never have I been so scared, I actually made them show me the name of the person on the results, thinking this is a mistake. Non-smoker, 58 year old healthy individual, never gave a thought to lung cancer. It is now 2019 and I have seen targeted therapy, chemo therapy, have had 2 surgeries. I have been on immunotherapy for 2 1/2 years, which has kept me stable. I think maybe the key to success is exercising religiously and making the body stronger for each day that follows. With exercise comes a strong mental attitude… two winning combinations!
