Community Caregiving – the best medicine

A visit, a gift, your time and your care - all are huge blessings!

A visit, a gift, your time and your care – all are huge blessings!

“Mommy, I want to go to Cradle Roll class”.  The girls headed out the door with daddy on the way to their classes and then church, but Andrew and I stayed behind.

I rubbed his bald head and said as brightly as I could, “We’ll go read some stories and sing some songs!”

He headed to the bookshelf, but the look on his face told me I was a poor substitute for the real thing.

They told us that Andrew had to be kept away from other kids during certain phases of treatment.  They told us he had to be kept germ free at time – it was in his best interest to miss out on things that other kids his age were doing.  Sometimes that was SO hard.

In fact, it was almost easier when he was actually hospitalized!

We dealt primarily with three hospitals throughout Andrew’s three and a half year chemo treatments.  All of them treated us wonderfully.  The nurses, every single one, were kind and caring.  The doctors were attentive, the treatments were scheduled and we were treated with respect.  Doernbecher Children’s Hospital, in Portland, was truly amazing.  They had social workers to explain Andrew’s leukemia disease to his four-year-old mind and also to his sisters (7 and 10 years old).  They made sure, as parents, we were informed.  We were never treated as though this was old business and our questions were not important.  They had videos, and musical instrument carts and book carts and visiting therapy dogs.

But we lived a long ways from hospitals, social workers, parents-of-leukemia-patient- community support group and a long ways from instant help and the charities often connected to children dealing with cancer.

But one of our unexpected blessings was the way our teeny tiny little community rallied around us throughout Andrew’s fight against leukemia.

Andrew was able to attend his own little church because of the kindness of people

Andrew was able to attend his own little church because of the kindness of people

In fact, the Cradle Roll teacher had someone come in and video the program (I had been the teacher before Andrew got sick) so that Andrew could watch it right after it was done (now it’d probably be live-streamed).

Many times, after a school program, there would be a quiet knock at the door and one of our students would hand in a prize from the program: candy, crafts, it didn’t matter what it was – it mattered that they remembered my boy.

Christmas season arrived and Andrew began talking about last year’s neighborhood Christmas party that was traditional.  “Mom!”  he exclaimed.  “Remember last year Santa knew all about me?  Do you think he will again?”

Santa had been Andrew’s uncle the year before, this year it was going to be a student – one of the ‘big kids’.  I carefully explained to Andrew, “Buddy, I’m sorry.  You and I are not going to be able to attend the Christmas program.  There’s a lot of sickness going around.”

“I’ll wear my mask!  I’ll be careful!” Andrew thought he had a plan.  But we were so far from medical help and if he got sick it became and emergency in our lives.

“No.”  I was forced to say, “We have to stay home.”

Andrew was filled with Christmas cheer because Santa remembered him!

Andrew was filled with Christmas cheer because Santa remembered him!

Imagine Andrew’s sheer joy when right after the party the doorbell rang.  His sister answered the door and a jolly voice declared, “Ho, Ho, Ho!  I missed my buddy Andrew during the Christmas party!  Is he here?  I have something for a boy named Andrew!”

Andrew flew around the corner and attached Santa, who handed him a present.  Santa whispered to me that he had sanitized everything and he wasn’t sick, “Is this OK?”  asked Santa.

Was it OK?  It was the best thing ever.

Those people who don’t forget you in their fun moments and that take care of you in unexpected ways.  What a blessing!

When the community comes to the patient and remembers them during community events, it brings joy! #write31days… Click To Tweet

Read more from the series 31 Days of Unexpected Blessings from Caregiving!

The Kindness of Strangers

Kind and caring words are some of the best gifts

Kind and caring words are some of the best gifts

It was really hard to see Andrew’s hair fall out.  It was incredibly difficult as Andrew’s skin went from pale to pasty and straight on to completely colorless.  It was annoying that he had to wear a face mask to go anywhere at all.  It was lonely to be isolated.  It was really hard to balance the doctor visits, the need for prescription medicines and Andrew’s need to be germ-free with the time crunch and necessity of getting the meds while we were in town to save on two hours of driving.

But oddly enough, all of those things led to a completely unexpected blessing.

Often, after a chemotherapy treatment, we needed to stop by the pharmacy for the follow-up medicines for the next week (insurance dictated that we could never order ahead).  On those days, I had no choice but to take Andrew into the store with me.  This was an ordeal.

It involved wiping the shopping cart down with a Clorox wipes, laying a clean blanket down, fastening Andrew’s mask securely over his mouth and nose and helping him into the basket, where he would flop down with nausea and exhaustion.

Since we lived an hour from town, I would order the prescription and then grab groceries while we waited.

This story isn’t sounding like a blessing, is it?  It didn’t feel like it at the time either.

Except that every single time we had to do this, something kind of amazing happened.  It would go a little like this:

“Oh my dear,” kind eyes peered out of a wrinkled face, “what kind of cancer does he have?”

“He has leukemia.”  I kept my replies simple.

“How old is he?” 

“Four.”

“Oh my.”  The little head would shake, “Bless you my dear, I cannot imagine how hard this must be for you.  I had cancer two years ago and I know how miserable the treatment makes you.  Bless his heart.  Would it be okay if I pray for you?  How long is his treatment?”

“We have about three more years.  And of course, we would love for you to pray!”

Certainly the description and the details changed with each pass through the store, but I began to see that there is a huge community of cancer survivors out there, and there is a huge community of strangers who have not had cancer, but still notice a person in need.  People who care.  People who pay attention.  People who listen to the prompting of the Holy Spirit.

None of the strangers in the store gave any money, or gifts or anything tangible – they simply gave a moment of their time, some words of encouragement and some prayers of blessing.

And I will never forget their kindness.

In the worst moments of caregiving the kindness of strangers can make a huge difference! #write31days #caregiving… Click To Tweet

Read more in the series 31 Days of Unexpected Blessing from Caregiving.

CNA or a Fairy Godmother to a Caregiver and Patient?

When hospital workers go above and beyond, it means the world to patient and caregiver alike!

When hospital workers go above and beyond, it means the world to patient and caregiver alike!

Laura entered Andrew’s room, carefully sanitizing her hands and greeting Andrew with her big friendly smile.  She was a favorite, because each time she entered, she always carried on a cheerful conversation, whether Andrew was well enough to respond or not.  She bustled around wiping sinks and counters, picking up whatever needed picking up and making Andrew’s bed with swift efficiency.  Andrew, on this morning, was glum and unhappy, not his usual talkative self.

“Laura,” I ventured, “are you going to be here for a little bit?  Andrew and I are really sick of The Lion King and he wants to watch Bambi.  Maybe I could run look for it?”

“Oh sure!” Laura responded with a grin, “I’ll be here for a little bit, you run along, grab some coffee or something while you’re out!”

I hurried along the sterile hallway rejoicing that my boy was comfortable and with someone who cared.  I searched the video cabinet, set aside for the cancer ward, and there was no Bambi.  I went down the hall to the outpatient clinic, then ran downstairs to another clinic.  At last I returned to Andrew’s room, defeated.  No Bambi.  Andrew’s dull eyes didn’t change much, but he grumbled just a little bit.

Laura mopped the floor while we discussed other options besides Bambi.  No other options appealed to the sick little man and he declared, “There’s NOTHIN’ to do…” and slid his body deeper under the covers.

“Well,” Laura chirped, “let me see what I can do.”

As Laura left the room I whispered to her, “Don’t worry about it.  Andrew can just figure out how to be happy in spite of not having his movie.”

Laura looked at me with kind, understanding eyes, “Mrs. Bovee, these kids have so little control over their lives, it’s just not fair.  Let me see what I can do, it’s a simple enough thing and Andrew is really very good natured and doesn’t ask for much.”

Laura came in and out of Andrew’s room for the next several hours, taking temperatures, checking blood pressures and bringing water and the requisite burrito.  No Bambi appeared and honestly, I was tired and didn’t care.  Andrew was having a really grumpy day and I was straining to find ways to occupy his mind, while letting his body rest.

Mid-afternoon Laura came skipping around the corner of Andrew’s door, waving a Bambi triumphantly over her head, eyes sparkling and grin wider than ever!  “Sorry it took so long,” she panted, “my mom missed the first bus option and so it took an hour longer than we planned.”

“What?” I asked in surprise, “this movie came by bus?”

“Yes,” Laura was still catching her breath, her eyes still sparkling, “I called my mom this morning to see if we still had Bambi at our house.  So she caught the bus, but just missed the one that comes directly here, so she had to catch the bus…..”

And Laura described several hours of travel that I wouldn’t want to deal with ever, let alone for a movie.  Her mom (who had never met Andrew) had traveled for 2 ½ hours across the city of Portland to bring a grumpy little cancer patient and his caregiver mom the movie Bambi.

Some people are more than medical professionals, they should be called fairy godmothers.

Some medical people should be called fairy godmothers, working magic above and beyond the medical #write31days… Click To Tweet

For more in the series of 31 Days of Unexpected Blessings from Caregiving.

Dirty Drawers and Caring Colleagues

Sometimes you have to let go of the dirty drawers and allow your caring colleagues to minister to you!

Sometimes you have to let go of the dirty drawers and allow your caring colleagues to minister to you!

I sank down in the midst of the piles of neatly folded and partially sorted laundry that was spread around the living room floor and began to cry.

Who knew it would come to this?  Me, who’d always been the caregiver, the rescuer, the one to jump in and help.  I was the one who struggled over being a working mom because I wanted to give my kids 100%, and I struggled over having three children because I wanted to give my students 100%.  Now, here I was after a week and a half emergency stay in the hospital with my boy, finding that a friend and co-worker had cleaned my filthy bathroom and washed, dried, folded and sorted our family’s laundry.  My husband was her boss, and now she had folded our underwear!  Something just wasn’t right about that!

Tears trickled down my cheeks because I felt like a failure.  I couldn’t’ keep up with everything right now!  Automatically my hands moved to sort the girls’ undies into the right piles and moved the socks into piles.  With each shifting movement, my tears dried a little more.  I stood up and gathered an armload and headed to the girls’ room.  They were quietly sleeping, not even noticing how late I’d gotten home because my friend had been there with them.  The next load went into my son’s room.  It was tiny pile; leftovers from before we knew he was sick.  I carefully placed the items in his dresser and looking around his empty room, I prayed yet again for his healing and soon return home.

The next load went to our room.  Putting away my husband’s clothes I thought about how little we’d seen of each other.  One of us was in the hospital and the other of us was with the girls; and then we switched.  I thanked God for a loving partner in this whole uninvited cancer thing.

My steps retraced to the living room, now cleared of the piles my friend and co-worker had folded.  The room was clean and the house quietly settled for the night.

I looked around, feeling peace for the first time in weeks. “I’m not a failure.”  I whispered into the silence, “and I’ve got people who care and support.  It’s okay if they fold my laundry.”

What an unexpected blessing!

Sometimes you have to let go of the dirty drawers and allow your caring colleagues to minister to you! #write31days… Click To Tweet

Read more of the series 31 Days of Unexpected Blessings from Caregiving.

 

How to Care for a Woman After Surgery

After Surgery Care

Ten Post-Op Caregiver Tips for Men

Women tend to stay home with sick kids and ailing husbands, so what’s a man to do when his wife or girlfriend suddenly needs care after a surgical procedure? When a person is sick, it’s not easy to articulate what one needs or wants—and with a woman, it’s often tricky because she’s accustomed to giving care, not receiving it.

If your sweetheart ever needs your caregiving skills, remember these tips.

1. Communication. Ask her beforehand what level of care she thinks she will want. Does she expect you to take a day or two off work and hang out around the house with her? Does she prefer to be in the house by herself and have you check in by phone, text or in person? Figure this out before she has surgery—and she’ll feel loved because you asked.

Tip #1: Communication is key to #caregiving. Explore expectations ahead of time. Click To Tweet

2. Solidarity. My honey refrained from eating or drinking in my presence during the tortuous hours before my surgery.

3. Photos. It today’s world, we tend to snap and post every event in our lives. Check with her before posting a pre-op or post-op photo on your social media channels—especially if it’s embarrassing.

4. Bring supplies. You’ll want to have salty, bland snacks on hand (the hospital soda crackers can instantly suck all the moisture out of an already dehydrated post-op body). You’ll want bottled water for the drive home. Bring things to keep yourself occupied during surgery—doctors always give estimated times, but procedures and recovery often take longer than expected.

5. Take notes. The surgeon will come out and talk to you when s/he finishes the procedures. Take notes. Your sweetie most likely won’t see the surgeon again until the post-op follow up visit (often 10 days or more later), and she’ll be curious about what the surgeon said after surgery.

6. Drive carefully. If you’re the designated driver, drive very carefully all the way home. If your sweetie feels nauseous, she’s likely to toss her cookies if you take the corners too quickly. Carry an emesis bag or basin in the car—sometimes, even the most tender driving won’t prevent post-op mishaps. Be willing to empty the bag or basin, too.

7. Choose your words carefully. If you happen upon your sweetheart kneeling on the floor with her forehead to the ground and her derriere in the air because she’s having problems with post-op regularity, it’s probably not the time to tell her she needs to ‘deal with the pain.’ Instead, use this situation as an opportunity to use your empathy skills. Offer soothing words such as, ‘That’s terrible!” and “I’m so sorry you’re having problems.” Offer to bring her milk of magnesia, prunes or fiber pills. Stand by and hold her hand while she downs the cures—it takes bravery to consume any of them.

Tip #7: Choose your words carefully when #caregiving. Click To Tweet

8. Know her love language. My honey went out and bought the newly released Beauty and the Beast video when our first child was born. He even watched it with me.

9. Encourage her to take it easy AND pick up the slack. If the doctor says ‘no lifting for six weeks,’ than make sure she has no occasion to lift anything. Vacuum, sweep, go grocery shopping, do the laundry—or hire someone to come in and do it. Not following the doctor’s orders can result in a second surgery down the road—not to mention prolonging the recovery time.

10. Make a point to cheer her up. If a woman feels blue after a surgery, it’s because she had surgery—not because of hormones. Anesthesia is hard on the body, and it will take time to recover. During recovery, it’s likely that your sweetheart will feel out of sorts and depressed—a natural reaction to having routines and activities interrupted by illness.

How about you?  Have you ever been the recipient of care after surgery or during a long illness?  What helped you the most? What do you wish the person caring for you knew but were afraid to tell them?

The Gift of Your Presence is a Beautiful Present

giftofpresenceHer voice came over the phone line, “You let me KNOW next time Andrew’s in the hospital and I’ll come sit with you!”

I thanked her sincerely and hung up. Knowing that she’d never come. We’d been at this chemotherapy for a year and a half already and most people had moved on, forgetting that we still dealt with unending hours in the hospital with my five-year-old somewhere between bored, uncomfortable, drugged sleepy and yet wide-awake—a combination only someone who’s been through childhood cancer can understand.

But the next week, the day before the spinal tap, I emailed my husband’s cousin, as requested, and let her know we’d be in the hospital in her town for about nine hours. I got no response. I expected none.

Driving through pre-dawn to arrive at the hospital for the 6:15 spinal tap, the weight of my son’s life settled on my shoulders and that “I’m all alone” feeling dogged again. Post-op we settled into a room with Dora the Explorer keeping a dopey boy occupied at twice the volume I wanted, but one that seemed to delight my boy. I tried to read but couldn’t focus. The nurse came in with Andrew’s breakfast tray and a cup of coffee for me. She smiled, “You look like you need this!”

I smiled, but didn’t touch the cup on the tray. I hate coffee. I closed my eyes, hearing the chant, “Backpack, backpack!” in the background. Goodness I hate Dora.

Suddenly, I heard a giggle. “You ready for me?” My cousin stood in the doorway with a bright smile wrapped around her face. How does she do that at eight in the morning? She blew on into the room and cracked a joke. We laughed and joked for a bit and her eyes kept drifting to Andrew’s breakfast tray. I encouraged him to eat, but her eyes weren’t looking at his food. Finally she blurted, “Are you going to drink that coffee?” I assured her I wasn’t and she grabbed it and amidst many more jokes, downed my cup of coffee. A few hours later she swept back out of the room – “Places to go, people to see.” she said.

“Call me next time you’re in for a long day. I’ll come by for your coffee!”

I didn’t think she would. It’s pretty boring sitting in there for hours. But she did. I would call, she would come, drink my free parent-coffee, crack jokes, tell stories and keep Andrew and I entertained for a couple of hours.

She moved to the other side of the country before we were done with chemo, but every time the hospital sent in my cup of coffee, I smiled. Free cup of coffee with my sister-cousin in the hospital. What a gift!

The gift of your presence is a beautiful present. #fmfparty #caregiver via @caregivermom Click To Tweet

Has someone ever gifted you with their presence?

Six Tips for Finding Financial Aid for Cancer Patients

“Twenty-seven THOUSAND, six-hundred and six dollars?” my voice inched up the panic scale as I read the number out loud to an empty room and the kitchen table. “For ONE infusion of Rituximab?” I checked the number again, then flipped to the last page of the 25-page hospital bill. “That would explain the pharmacy bill of $135,870.25,” I muttered. And the total hospital bill for a 28-day stay of $249,190.38. I wondered if someone offered financial aid for cancer.

6 tips for finding financial aid for #cancer treatment http://wp.me/p2UZoK-4i via @blestbutstrest #caregiver

At the time, Rituximab was an new drug.

(more…)

Feeling Dismal? You Are Not Alone

Jesus felt your painDear Friend,

I know the day seems dismal and dreary despite the summer sun shining brightly outside your window. I know that each breath requires a herculean effort and retreat into a dark hole seems like the only option.

I know how difficult you find it to text, to call, to reach out through your fog and find a friend (after all, you think you don’t deserve friendship). I understand your resistance when friends try to force themselves and their opinions on you and what you should do.  You think you are unworthy and unhelpable and no one has ever felt like you feel right now.

The crisis you find yourself in is deeper than a spiritual crisis (although we pray daily that the Shepherd will guide you towards the help you need). Do not feel guilty because your ‘faith isn’t strong enough.’

Do not attempt to heal yourself—that’s like telling a cancer patient to cut out his own tumor or just pray it away. Don’t let embarrassment keep you from seeking the professional help that could start you on your journey to wholeness.

Depression manifests itself in many ways—physical illness, impulsive eating, emotional outburst or lack of feeling. Cancer manifests itself in many ways, too. You can’t cure either one on your own.

There is no shame in admitting that you need help. There is no shame in taking medication or participating in counseling or even going to a hospital. Do whatever it takes to discover the causes of your condition. Explore the treatments and the healing and embrace them wholeheartedly.

And just as I pray for my friends that face cancer, know that I hold you up in prayer as well. I have a friend who felt just like you do.

Jesus suffered the same darkness that you experience. “Jesus told his disciples, “Sit here while I pray.” He took Peter, James, and John with him. He plunged into a sinkhole of dreadful agony. He told them, “I feel bad enough right now to die. Stay here and keep vigil with me.” (Mark 14:32-34, The Message).

And so I will keep vigil with you.  You do not suffer alone. Jesus knows your burden. (tweet this)

He will guide you to the help that you need. Embrace the help that he offers.

You are not alone. Ever.

 

Linking up with Kaitlyn Bouchillon and other encouragers.

The Messenger (Dr. Doom) Takes a Seat

One month later, the doctors let Pedro leave the hospital to wait for his stem-cell transplant procedure to begin.  The girls come for another visit.

One month later, the doctors let Pedro leave the hospital to wait for his stem-cell transplant procedure to begin. The girls come for another visit.

I’m joining Lisa-Jo Baker and other writers for another Five-Minute Friday—where Lisa-Jo gives us a prompt and we all write for five minutes—no holds barred. This week’s prompt: Messenger

Dr. Doom* came into the room and sat on Pedro’s hospital bed. He sighed and held his hands together. He leaned over and fiddled with the IV lines and shook his head. Pedro didn’t look good.

“He doesn’t have any white blood cells,” Dr. Doom stated.

His news didn’t surprise me. After all, Pedro had just gone through a round of ‘salvage chemo’ (another term I never bothered to investigate too closely).

A plastic eye patch covered his right eye—which no longer closed due to the paralysis in his facial muscles caused by the lymphoma cells in his brain fluids. I watched the blood in his vessels flow through the skin in the sunken spots to the sides of his eyes.

“It’s a race between the yeast infection in his blood and his white blood cells,” Dr. Doom said. He looked at me for the first time.

I nodded and smiled. “What options do we have?” I chirped.

Dr. Doom looked a little startled. “There’s always a white-blood cell transplant,” he mused.

I nodded again. I probably looked like a bobble-head doll. “Where do we get the white blood cells?” (more…)

No Room in the Nave (Would You Want YOUR Friend to go Through THIS?)

Insurance doesn't pay for caregivers who travel with an ill family member.

Insurance doesn’t pay for caregivers who travel with an ill family member.

 

 

I stood on the busy street corner, staring at the imposing edifice rising from the concrete jungle in the shadows of nightfall. Churches in inner cities sure looked different from the ones back home in Montana.

Glancing nervously about, I checked the directions jotted on my suddenly cold palm. MUNI to route five, route five to 10th Street stop. Two blocks from bus stop. I stepped to the left, then the right, shifting the overnight bag that dug into my shoulder, hoping to find comfort and cell service. The phone started to ring. At last!

“Hello, Pastor Bob speaking.”

“Yes, um, my name is Anita and my husband has cancer and is at UCSF and a friend told me that your church has a guest room and I was wondering if I could spend the night there.” No point in beating around the bush. My exhaustion demanded a place to stay.

The silence on the other end made me check my phone once again for service. “Hello? Can you hear me now?” (more…)