Sink or Swim: Cancer as a Second Langauge

Caregiving often feels like drowning.  Tips to help you learn to swim.

There aren’t many ‘lifeguards’ in hospitals, but these five tips can help you learn how to swim.

When cancer strikes, it’s rather like being deposited into a foreign country (where no one speaks your native language) with nothing more than a small suitcase and none of the local currency. Just like they say about language immersion programs, you have two choices: You can sink, or swim.

Evidently, I’m a good swimmer, because within three months of Pedro’s initial diagnosis, hospital personnel would ask me, “So, are you a nurse?” Or even, if I sounded particularly bright, “Where did you do your residency?” I even received the employee discount at the local hospital because the cafeteria workers assumed I worked there (I found this out when one of the cashier asked for my employee card and when I told her I didn’t work there, my cinnamon roll cost seventy-five cents more than it had the previous week).

My basic survival skill, being quiet and trying to look intelligent, evidently fooled a lot of people. Soon, I could toss words like ‘intrathecal,’ ‘monoclonal antibodies,’ ‘methotrexate,’ and ‘Rituxan’ around as if they were part of everyone’s vocabulary.

But deep down inside, I felt like an imposter. I had no idea what was going on even though I knew exactly what was happening. Learning the lingo allowed me a sense of control, but in reality, I reminded myself of a hopelessly lost ESL student.  But I swam, I acquired and I ‘learned cancer.’

***

In fact, I reminded myself of one of my students, who stared at me out of brown eyes widened by fear.  Her gaze bounced between me and the other students seated in a circle.  I glanced at her chart—Rats, her native country was Bangladesh, and there was nothing I could do to help ease her transition into her new classroom in her new country. (more…)

Four Tips for Handling the Long Haul as a Cancer Caregiver

Friends taking Andrew for a 'stroll' in a wagon.

Nothing beats the kindness of friends and family who volunteer to entertain a sick child.

Pastor Carl gently pulled the wagon up over the edge of the sidewalk, trying not to bump the worn-out boy in the facemask who rode in the back. Shortly after Andrew returned from his first hospitalization, Pastor Carl dropped by for a visit and offered to take Andrew for a walk. Andrew didn’t really have enough energy for that, so we sanitized the wagon, bundled him up tightly and put on the mask—and he got to go outside!

After the ‘walk’, Andrew went inside to nap, and the pastor stood outside on the steps to check on us. My husband and I chatted with him and answered questions about our courage and our outlook. Our answers were easy; people had been so amazingly supportive! We had cards and notes, prayers and gifts – support from every corner of the world. It was really amazing and an incredible gift. We felt blessed and loved.

Then Pastor Carl deflated our optimism, “Guys, you know this won’t last.” (more…)

Signs Someone is Drowning (and it Could be YOU!)

Look around. Do you see any #caregivers drowning in plain sight? http://wp.me/p2UZoK-7c via @blestbutstrest

“Throughout the Instinctive Drowning Response, drowning people cannot voluntarily control their arm movements. Physiologically, drowning people who are struggling on the surface of the water cannot stop drowning and perform voluntary movements such as waving for help, moving toward a rescuer, or reaching out for a piece of rescue equipment.” On Scene, The Journal of U.S. Coast Guard Search and Rescue

Projecting

Although it happened 12 years ago, I still remember as if it were today.

I worried about Sarah. She seemed to take Pedro’s cancer too glibly. She seemed detached. She never had problems for me to solve, or little worries to share with me at bedtime. She’d never been a complainer—she was always self-sufficient and happy.

Her teacher surprised me when she said, “Sarah seems really angry.”

“What?” I asked, arching my eyebrows in disbelief. “Sarah? What does she do?”

“Well, it’s not that she yells at other students, or even gets mad at them,” her teacher replied. “It’s more what happens over small things.”

“Like what?” I’m sure the teacher was taken aback by my interrogative tone. I didn’t usually act so bristlywhat was wrong with me?

“For example, when Sarah falls down on the play ground, she’ll stand up, stomp her feet and cry—when we try to find out if she’s ok, she brushes us off and acts even angrier.”

“Oh,” I explained, “Sarah’s never been great at sharing her feelings. She’s probably angry that she had any reaction at all—after all, she’s eight and probably thinks she’s too old to bawl over a bruised knee.” I excused myself and hurried away. I had reason to worry—I just didn’t want to talk about it with someone else.

Sarah must be projecting—something I’d heard about, but was positive I’d never done. I wondered about the solution, but never got around to researching it. After all, Pedro was improving and this would soon be a memory from our past.

***

School let out shortly after our conversation, and we tried to fill our summer with good news and healing: a fun trip to Yosemite combined with a chemo appointment in California (where he was declared ‘officially in remission’), a visit with the girls’ best friend in Nevada, a family reunion, a visit with favorite friends in Washington, and then a week at camp.

On the way back from camp, we bought six lugs of apricots. Just days after returning home, Pedro landed back in the hospital, and this time, the news shocked us: Relapse of his non-Hodgkin’s Lymphoma with central nervous system involvement.

I had all those apricots to deal with. The girls spent time at a friend’s house (I’m actually unsure of this detail—I know they were with someone safe, but I was so worried about Pedro that I can’t remember who’s house they were at). Every afternoon, I would slip away for two hours while Pedro rested, and rush home to the apricots.

I had apricot jam making down to a science. I would sterilize jars and heat up the water in the boiler while sorting and pitting apricots. Next, I would whiz the apricots together with some pineapple in the blender, then dump it into a kettle and bring it to a boil and add the sugar, pectin and spices. Within two hours, I’d have ten or fifteen pints of jam sitting on my counter.

The whole time away, I felt guilty—I should be at the hospital with Pedro. I should be with the girls (where were they today?). While at the hospital, I felt guilty about the apricots. We’d spent good money on them—I couldn’t let them go to waste. At night I would sniffle a few quiet tears while thinking about the apricots.

In the morning I would cheerfully inform Pedro of my jam progress and let him know that I’d be gone for a few hours in the afternoon to run a load of laundry and make some more jam. I tried not to notice the pounds melting off his once-fit frame.

While making jam, I would find tears leaking from my eyes and blame residual laundry detergent and a casual wipe to the eyes as the reason for my tears. The fact that the state of Montana didn’t have enough methotrexate to administer chemo in the prescribed amount from his California oncologist concerned me.  How long would it take to ship it in  from neighboring states?  Did I need to go on a road trip and pick it up myself?  That wouldn’t work, though, the apricots might rot.

I ran out of jars after four days and took a quick detour to Safeway to buy some more. On the way to the canning aisle, I bumped into a display with blueberries for cut-rate prices. Pedro LOVES blueberry jam. Maybe he’d eat some and put on a little weight.  His wedding band fell off when he stood up that morning. There was NO WAY I could pass up on this bargain. Fortunately, it only took one afternoon to make the blueberries into jam. I had the time—not all of the apricots were ripe yet.

I considered scavenging other stores, looking for other bargains, but decided that maybe I didn’t have time. After all, I had cancer to fight, decisions to make, treatments to explore, insurance papers to fill out and children to look after—whose house were they at tonight?

I needed to remember to ask Sarah’s hosts if she displayed signs of unreasonable anger—and I needed to look up causes and cures of that mental phenomena the psychiatrists called ‘projecting’. After all, I’d never met anyone who fought feelings by doing something unreasonable before.

Don’t miss Part I, Part II and Part III of our series!

Signs You Might be Drowning in Plain Sight

The beautiful water belies the silent drama...

The beautiful water belies the silent drama…

Drowning victims and caregivers share more than one might think. In this five-part series we explore the phenomena of “Drowning in Plain Sight.” As you read, whether you’re a caregiver or someone who loves a caregiver, think about the people in your ‘pool’–is anyone drowning?

“Except in rare circumstances, drowning people are physiologically unable to call out for help. The respiratory system was designed for breathing. Speech is the secondary or overlaid function. Breathing must be fulfilled before speech occurs.” Characteristics of the Instinctive Drowning Response–On Scene, The Journal of U.S. Coast Guard Search and Rescue

The doctor adjusted his stethoscope on my back and told me to take a deep breath. I breathed in, and sat, not paying much attention to what was happening. The stethoscope didn’t move. “Again,” he ordered softly.

I let out the air I’d been holding and took another breath while my mind skipped to what I needed to grab from the store before I headed home from this appointment.
The stethoscope still had not journeyed to a new spot.

“Carol,” he reprimanded, “take a de-e-e-p breath!”

I reached deep and breathed properly. This I could do. My life might be falling apart and things running out of control, but I could breathe deep. I’m a flute player. My flute teacher used to make me practice breathing and taught me how to breathe deeply from the abdomen. I drew a deep breath and found that my air seemed to have nowhere to go. I pretended to myself that all was normal and waited for the stethoscope to go to the next spot.

The stethoscope dropped while the doctor felt along my back.

What was the deal? He’d only listened to my breaths at the top of my back, that wasn’t normal, was it? Oh really. Who cares? I wonder if I mixed Andrew’s nasty medicine with chocolate pudding, would that help him get it down? Swallowing posed the problems…pudding is soft, maybe he could get it down that way. Oh, and besides the pudding, I should get some shaving cream. Karina needed to study her spelling words and writing in shaving cream is a fun way. Yeah, and my grades are due next week, so while she’s practicing spelling, I should get those tests graded. Man, I wish this headache would go away.

“Have you ever had asthma?” the question came out of nowhere.

“Asthma?” Was he kidding? “No, I’ve never had asthma. My breathing is fine—I’ve never had any problem.”

Silence.

“Why, is there a problem?” I finally thought to ask.

“Well, Carol. If you don’t have asthma…then…you’re not breathing.”

I laughed out loud. “I assure you I’m breathing. I’m alive.”

He smiled kindly and explained to me that the muscles in my back felt like the slightly atrophied muscles of an asthmatic patient; showing signs of not breathing deeply enough. I sighed and the very act of doing so proved to me that this doctor was way off.
Not breathing – who ever heard of that. Of COURSE I was breathing. One has to breathe to live.

He explained more fully that while he was listening, I took a decent breath, but then half the time forgot to let it back out. I needed to practice breathing by taking in big breaths, holding it to the count of three and blowing it, hard, all the way out. Then push even more out if I could. I was holding too much in.

Brother! I’m holding too much in, all right, but it’s not air. It’s panic, it’s fear, it’s responsibilities, it’s life. But breaths? I was doing fine!

I left the doctor’s office slightly miffed that I hadn’t gone in for breathing issues at all, yet he’d spent valuable time obsessing about my breathing.  Frankly, the doctor had scared me a little bit with his pronouncement about my back. This was the same doctor who kept telling me I needed to get some help; to stop carrying things on my own and to allow people to give me some relief. The same doctor who had, just the week before, reminded me that in order to keep caring for my leukemic boy I would need to eat a little better, drink more water and maybe begin exercising.

Again I snorted with disgust. Like I have time to exercise and eat better…I’d like to see him get up at 3 to get to chemo and return home after dark and still get Larissa to her club meeting and read with Karina and get papers graded. Drink more water? That’d be great, but who has time to count drinks and really, I’d just have to use the bathroom more often. But yeah…we all know those health rules and just as soon as I could, I would follow them like I used to do.

All the way along the one-hour highway route my mind berated that silly doctor who could never just treat what I was asking for, but continually reminded me of taking care of not just my sick boy, but me. My thoughts bounced around wildly like they had come into the habit of doing, and I drove steadily onward. Suddenly breath gusted out of my mouth as dizziness hit.

Whoa. That was weird. I think maybe I was holding my breath while I was thinking! No, one doesn’t just hold a breath – no one thinks about breathing, they just do it and it works! It’s natural! I continued homeward, thoughts flying in a different direction. Out of nowhere another breath blew out. Oh my goodness, my shoulders are up and I had been holding my breath!

Catching myself holding my breath three more times on the way home convinced me that, indeed, my life had become so crazy that I was now holding my breath, along with my shoulders and my fears, in an effort to accomplish more than I could handle.
I had quit reaching out to friends, feeling that I didn’t have time.
I had quit all the things I most enjoyed doing in an effort to help my kids be “normal”.
I had quit walking in the morning, using that time to get a head start to my day.
I was no longer doing all the things to take care of myself, in order to care for my family.
And I was no longer breathing. 

Have you ever found yourself ‘not breathing’ and unable to communicate with others about your inability to breathe?

The series continues with Breathing Lessons.

Have You Made a Plan for a Catastrophe?

(Almost) Losing Sarah

planBig City Traveling

We looked like something out of a freak show. A plump, flustered lady lugging a lawn chair, blankets, a pillow and a bag standing next to a tall, bald man who looked liked he’d escaped from the set of Schindler’s List. Two excited, fluttering children jabbering about swimming in the ocean while gripping beach towels and waiting impatiently for the Muni to show up.

The brisk San Francisco winds wafted the words of our strange group around. I looked up, glad for the sunny October skies and the ability to fulfill our daughters’ desire to swim in the ocean (we lived in Montana—one swims in the ocean when one has the chance, not just if the water is warm). Everything and anything we could do to make the few days we got to spend together normal was worth every grey hair and frazzled nerve.

It Seemed Like a Good Idea at the Time

“I’ll help Daddy up the steps!” declared Laura, our oldest daughter, as she moved into place at his side.

“Thank you. Need help.” Pedro’s words required effort because his facial muscles remained frozen.

“I have the towels!” Sarah excitedly grabbed Laura’s towel and stood in the front of our

I snapped this photo the day before our almost loss.

I snapped this photo the day before our almost loss.

group. I shifted my load and worried about whether or not Laura’s nine-year-old muscles would provide enough help for Pedro to negotiate the two steep steps onto the approaching train.

The Muni slid to a stop in front of us. Sarah danced around behind the people in line ahead of us, waiting for the disembarking passengers. I decided at the last minute that I could carry everything in one hand and assist Pedro with the other. While shifting my load to one hand, I heard the doors start to slide closed I looked up in shock. Pedro and Laura stood inches away from the entrance. Sarah was inside the Muni. Her face frozen in horror as the door whissst closed with a solid thud.

Without a Backup Plan

The world around me entered slow motion. I heard the lawn chair clatter to the sidewalk as I lunged for the door and pounded on it with both fists. Laura screamed. Pedro sounded like it came from underwater.

The train gave a jerk forward. Some smart person inside the train hit the emergency button. The train jerked again. The doors slid open. Eager hands reached out to help us gather our belongings and lumber onto the train. The doors slid shut.

In retrospect, I probably could have sprinted alongside the train to the next stop—the Muni doesn’t move that fast in that area. But Sarah was only eight.  We had been caught off guard in a big city with no proper plan for what to do if we should get separated. I didn’t know if our girls knew our cell phone numbers.

As we neared the end of the line and the Pacific Ocean, my mind kept repeating the scene. The whissst of the doors. The look of horror on Sarah’s face. The feeling of drowning. I didn’t even notice that the man in the corner was rocking back and forth talking about the voices, or the old man carrying a parrot on his shoulder. All I could think about was our loss—our almost loss.

How unprepared we remained for emergencies and separation.

Difficult Conversations

We lugged everything off the train and the girls ran into the bathroom to change. After crossing the street to the sand dunes, Laura and Sarah flew ahead, oblivious to the cold, the wind and the near loss. I dragged the lawn chair, the blanket, the pillow and my bag to a sheltered spot with a view of the surf and helped Pedro settle himself.
The girls lunged into the ocean, splashing and squealing in delight.

“Scary.” Pedro said.

I nodded, unable to speak about it yet. Finally, I ventured, “Maybe we should have a plan about what to do in case of emergencies.”

“Good idea.”

Silence cloaked us.

“I’m cold. Can we go?”

I nodded and called to the girls, “Five minute warning! Daddy’s freezing and we need to get him warm!”

They grumbled good-naturedly, but their blue lips belied their words of wanting to stay in the ocean longer.

I looked at my watch. Fifteen minutes. We’d almost lost Sarah for fifteen minutes at the beach. I shrugged. It didn’t matter. Fifteen minutes or five hours. When life holds only uncertainty, every minute counts.

Plans

You should have one. If everyone in your family enjoys good health, now is a great time to talk about plans. The best time to make a plan for a #catastrophe is BEFORE one happens. #cancer Click To TweetPlans for emergencies, plans for disasters, plans for ICU and catastrophic events. Not talking about those things won’t prevent them from happening. Make plans before you almost lose someone. Trust me. It’s better that way.

 

Three Tips for a Cancer Caregiver

No one WANTS to join, but once you're inducted, you might as well take part!

No one WANTS to join, but once you’re inducted, you might as well take part!

It’s not an elite club.
It’s not a desirable club.
It comes with a very high membership fee.
No one ever requests to join.
But once you’ve been inducted into the club of Cancer Caregivers, you might as well participate fully. No matter how busy you are at your full-time job of caregiving, plus your regular employment, plus your responsibilities as parent, spouse, etc, outside of the caregiving role, our advice to you is Join the Club!

 

 

1. Make it a priority to participate. Children’s hospital facilities often organize parent suppers or get-togethers to form a sort of parent-support group. Sometimes I felt that I did not have time to go, but when I went it was so nice to be with a group of people that were sharing my journey…who knew what questions NOT to ask, who knew what subjects were OK (it’s only in this group that it’s OK to talk about bodily fluids), and who might have more experience than you do at what you’re doing.

2. Take advantage of offers. Sometimes, charitable groups offer benefits to cancer patients and their families. Candle-lighters, a helper group for families of children with cancer, offered our family the chance to take a jet-boat river cruise for a day outing with other children-with-cancer families. They had offered other things over the years of fighting cancer, but often we could not participate because of travel distances or work commitments. This day on the river was a joy – and it was so touching to watch other cancer-kids in different phases of treatment, living their lives as “normal as possible” under the circumstances…choosing to live with joy for a day. It was good for my boy to recognize that other kids were in different stages, some bald, some healed, some still struggling—he felt like he was in a group where he belonged!

1. Be brave and share. I remember standing outside the entryway to the children’s cancer ward, staring out the window, feeling very alone and overwhelmed. A lady stood down a ways and after awhile I noticed she had the same blank stare out at the beautiful scenery that I had. I felt a little shy, but she looked like she was hurting. I tried the line, “You come here often?” She smiled and told me of her son, back for his umpteenth hospital visit in a long fight with brain tumors. I told her of my son’s fourth hospital visit in a new fight against leukemia. We didn’t really offer any advice, we didn’t hug or make a lifetime friendship, but for just a moment, our burden was lightened because we were not walking alone.
What ‘club benefits’ have you taken advantage of?

Screaming (Five Tips for NOT Screaming When You Really Feel Like it!)

While tempting, screaming seldom solves anything.

While tempting, screaming seldom solves anything.

“Get out of my way!” I screamed at the driver who cut me off. “Where could you possibly have to go that’s more important than me taking my son to the ER?”

“I don’t have time for this!” I screamed in my classroom at the mountain of papers the substitute had piled up for me to grade.

“You can’t have him, we’re busy!” I screamed at the people wanting to talk to my husband about stupid mundane problems at school. “Can’t you see my son is hurting?  Who cares about your trifling issues?”

“Don’t talk to me about your over-active son’s problems!” I screamed at the couple in the elevator. “My son used to be active, but now he might not even live!”

“Don’t joke about me ‘moving in’ when you see me carrying a suitcase into the hospital!” I screamed at the janitor. “This has become my life overnight, and it’s NOT a joke!”

“How can you all keep going on as though nothing is happening?”  I screamed at the world.

“How can you go snowboarding when my son is fighting so hard to live?  How can you go shopping when my son is being poked over and over?  How can you rent movies and crack jokes when my son is in so much pain?  How can you go to school when my son is going through torture?”

I screamed at everyone!

My son. My only son. Fighting for his life while the world keeps going. My precious, precious son.

Wait a minute.

His son. His only son. His precious, precious son.

Does God want to scream at us?  “How can you keep going?  How can you keep doing those mundane useless things?  Don’t you realize my son was tortured, poked and suffering?  My only son?!”

But that’s not the kind of God He is. He doesn’t scream at people, just like I didn’t really scream at anyone. But I wanted to.

I wonder if God ever wants to scream.

Five things to do when you feel like screaming (but can’t):

  1. Breathe deeply from your diaphragm.
  2. Vent to a journal.
  3. Pray—if all you can say is, “Dear God!” it’s ok. He understands the groaning of our heart (Romans 8:26-28).
  4. Praise God—it sounds counterintuitive, but praise trumps rage, every time.
  5. Phone a friend (a safe friend) and ask if you can vent out loud.

Six Ways to Prevent Caregiver Burnout

Caregiver Burnout

When others offer to entertain your loved one, take time to go for a walk or relax by yourself--DON'T do housework!

When others offer to entertain your loved one, take time to go for a walk or relax by yourself–DON’T do housework!

Cancer Caregiving 101: Take Care of Yourself and Prevent Caregiver Burnout

“Now you must realize,” the doctor straightened the papers into the already thick folder as he finished summarizing the diagnosis, treatment protocol and prognosis, “with a best-case scenario, we’re in for a long haul. You two must take care of yourselves, too. This is not easy on parents, either, and you can’t let yourselves get run down.”

The nurse bustled into the room, loaded with scary looking objects which she unloaded in the room’s small bathroom. “So, you cannot touch this hat in the toilet, we can’t have his samples contaminated. Also, be sure you don’t let any urine touch you when you help your little guy go – because it will burn a hole in your skin.” There followed some more directions of what not to touch in the room and what not to do and what I needed to help Andrew with and what I needed to remember. As she breezed back out the door, having set these little traps all over the room, she paused in the doorway, “Mrs. Bovee, you need to remember to take care of yourself through this…this will be a long, tough road.”

After a two-week stint in the hospital with a feverish and neutropenic boy, I was home, frantically trying to recuperate the family from separation, restore the house from chaos and prevent the laundry piles from taking over the world. As I sorted and started a load, a neighbor followed me from washing machine to dryer, not helping, but faithfully entreating me that I needed to “take care of yourself! Carol, you are just working too hard! You need to let go!”

I stumbled along beside the gurney as we returned from the spinal tap, wiping my tired eyes and unsuccessfully hiding a yawn behind my hand. The nurse, pushing a dopey Andrew, smiled sympathetically at me. “Carol, I hope you’re taking care of yourself. We see so many parents pushing so hard. You’ve got to take time out. Don’t forget you’ll need to recharge your batteries too.”

We received that advice throughout Andrew’s treatment. “You parents need to take care of yourselves too.” “Remember that you can help your boy best if you’re taking care of yourself too.” “Take some time for you!”

Great advice.
Perfect!
Ideal.
Laudable recommendations from caring souls.

“Don’t lift that boy – he’s too heavy for your back!” – OK, but he’s four, sick to his stomach, neutropenic, tired…I’m supposed to tell him he’s on his own?

“Don’t worry about the housework, take care of yourself.” – OK, but I cannot have a sick boy around dirt…is someone going to clean it for me?

“Make sure you eat regular and healthy meals!” – Ok. But the procedures are always during breakfast time, recuperation through lunch, driving through supper and falling into bed. When was I supposed to eat? And what in the world is a ‘regular time’?

The job needs to be kept, the house needs to be clean, the kids need to be loved, the meals need to be fixed, the sick one needs to be cared for – when, exactly, was I supposed to “take care of me”?

Truly, all I could concentrate on, throughout my son’s illness, was him! It wasn’t until it was too late, and I was in trouble, that I realized what I had done to myself. So the question I hear, from so many caregivers, is this:

HOW do I take care of myself, when my primary job is to take care of him/her? (tweet this)
I’m probably the last person to take advice from, as I did not necessarily do it right. On the other hand, maybe I’m a good person to listen to—I can honestly look back over my journey and say that there are things I would do no differently even if I could have known exactly what I know now. I would still give 150% to my child and my family.

However, there are some things that I wish I could go back and change, or do better:

1. Delegate the little things as much as you can: you cannot delegate the worry, no one else can carry your pain and your patient might not want you to delegate personal care. So delegate the windows being washed, the lawn getting mown, handing someone your money and your shopping list, etc. Delegate as much as you can. Sometimes that means swallowing your pride, but it might help you avoid swallowing medication later! ☺

2. Make lists. If someone offers to help – have a list ready of things they might be able to help with. If you have nothing you can think of right that moment (I remember someone offering to help while we were waiting for Andrew to come out of a procedure – nice, but not where my brain was right that moment), then write their offer down and get contact information and ask if you could call on them sometimes.

3. Ask. Don’t be afraid to call your pastor or a neighbor or a co-worker and let him/her know of a need. A lot of people think we caregivers have it all under control and don’t think to even ask if there’s a need. But many would help if they knew of a need. One person said to me, “It’s OK to allow someone else to have the blessing of helping you.” I had never thought about it that way before, and that was releasing to me.

4. Be willing to let go: sometimes, we caregivers think we need to be superman and wonder woman all rolled into one. We can’t. Or maybe, like in my case, I could for a while, but sustaining that after a while becomes impossible. Take the help that’s offered. And also let go of how that help is done. It might not measure up to your standards – but it will probably work!

5. Search out quiet moments. The days of caregiving are often busy and hectic, and when they are quiet, they can be scary. Grab moments of quiet to journal or to process some of what’s been going on. Take those moments to evaluate how you’re doing and how you’re feeling. Is it time to get some help? Do you need to find someone to talk to?

6. Expect less of yourself. This one has nothing to do with others’ helping, and everything to do with you deciding that it might be OK if you don’t get things done. Maybe you need to say no to some things you used to do. A caregiver has to re-examine priorities; and in that re-examination, one of those priorities has to be you. Your sanity, your health, your ability to keep on going.

What ways have you found to take care of yourself?