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Caregiving Wisdom

The following are 6 nuggets of caregiving wisdom that I have gained the hard way. I’m a caregiver for my husband who has been living with stage IV lung cancer since 2012.

Nugget of Caregiving Wisdom #1   Looks can be deceiving.

Both caregivers and patients can keep it together in public, only to fall into bed, exhausted, once they get home. One patient said that people often were amazed at how good she looked, considering she was undergoing treatment for breast cancer. She said, “I wish I felt as good on the inside as I look on the outside.” You can’t control how others see and respond to your situation. That’s okay. But make sure that you don’t compare yourself to how you think you should be doing. Things like housework, yard work, and hitting the gym will have to take a back seat, so ditch the guilt. Those things mean nothing when someone is dying.

Nugget of Caregiving Wisdom #2   Work as a team.

Friends, family, doctors, the caregivers, and the patient are a team. Don’t feel like you have to, or should be able, to do it all. No one was meant to take on that load. There will also be times when you are able to do more and times when you have to do less. During those times when you are getting worn down, rely on your team. Utilize the tools available to you like Caring Bridge. This can help you bridge to your community.

Nugget of Caregiving Wisdom #3   Relationships will change throughout the caregiving journey.

Some of the changes will be negative. Illness will change the life of the patient and the caregiver as well as those who love them. There’s a lot of grief over what once was, but is no more—even if you end up in a good place.

There are also positive changes. Often relationships are strengthened as people reassess their priorities. You find out who really cares by their response to what you are going through. Spousal relationships no longer sway to flippantly considering splitting up.

Nugget of Caregiving Wisdom #4   YOU will change throughout the caregiving journey.

A few of the great quotes I heard from caregivers on the panel were:

  • “Wisdom is healed pain.”
  • “The dying can teach us how to live.”
  • “It’s a tougher life, but it’s a bigger life.”

Nugget of Caregiving Wisdom #5   There’s no perfect picture of a caregiver.

There is no right or wrong way to do it. Age, diagnosis, prognosis, and support system, all make each case different. A caregiver isn’t just a warm body. They offer spiritual, emotional, financial and physical care. How this looks will be different for every patient.

There’s a lot you can’t do for the patient, but you can be present. Listen to hear, rather than to respond. Do this and you’ll get all the information you need.

Nugget of Caregiving Wisdom # 6   Anticipatory Grace

Fear is a very real, very intense part of caregiving. Fear of:

  • Not doing well enough
  • Scan results
  • Treatment side effects
  • Financial future
  • The kids’ well being
  • “Devastating information” we get from the doctor (or Dr. Google)
  • The death experience

You want to hold on tighter to what you could lose. Learn to release so that you don’t miss out on the beauty. Take life one minute at a time rather than going down the rat hole looking for the worst.

I have plenty more nuggets of caregiving wisdom to talk about in future posts. Until then…

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-04-26 07:00:14.


Tagrisso Video

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is V for Video. I will be sharing the videos we taped to share how Tagrisso helped my husband and I have more time together.

Background

In 2015, Dan began coughing frequently. Soon he was struggling to breathe. It soon became clear that the treatment he was on was no longer working. After being tested for genetic mutations, we learned that Tagrisso was a treatment option for Dan. Within a couple of weeks on the drug, he was breathing freely. The amazing thing was that unlike other treatments, he didn’t have a lot of side effects on Tagrisso. Soon, we were living life again!

Making a Video*

In November, 2017 we were invited to share our story in video form. I really appreciated the integrity of the videos. They really stayed true to our story and our experience with Tagrisso. It’s so important to be tested for genetic mutations to learn what treatments are a good fit for you.

Unfortunately, the video is no longer available on youtube

Video of Our Story and Tagrisso: A Promise KeptMaking a Video

We Flew out to Richmond Virginia to share our story of how Tagrisso helped us live life as close to normal as possible, despite Dan’s cancer. When Dan and I got married, he promised that we would go on a date every week. I said it would be okay if we couldn’t sometimes, but he was determined to keep the romance alive by having a weekly date night. Making a video about our experience with Tagrisso was no different. We went out for a night of music and ice cream. They made a video of it all, as well as our story, told from each of our perspectives. It was fun to have a behind the scenes look at making a video.

 

 

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

 

Originally posted 2018-04-25 07:00:26.


Breathing Technique

This is part 3 of our Breathless Series. In Part 1, we looked at some of the reasons for breathlessness in cancer patients. I also shared my husband’s experience with shortness of breath to the point he nearly died. In Part 2, we looked at medical approaches to breathlessness. This post will be about non-medical approaches to breathlessness, including breathing technique and ways of controlling your environment to alleviate symptoms of breathlessness.

Non-medical approaches, including specific breathing technique, can be very effective ways to breathe easier.

On January 25, 2017, the Lung Cancer Alliance, kicked off their Coping Series with a webinar called “Breathing Easier.” The Coping Series is designed to educate and provide practical ways to manage the most common symptoms and side effects experienced by lung cancer patients and survivors. If you would like to see the full webinar, click here.

I would like to thank the Lung Cancer Alliance and the webinar presenters. They’ve kindly allowed me to share (originally on Heather Erickson Author/Writer/Speaker) the information they taught, along with some slides from the webinar. I especially thank Dr. Lynn Reinke, a nurse practitioner, recognized nationally and internationally as a dyspnea crisis management expert (1). She spoke about breathing technique and other non-medical interventions to improve breathing.

Breathing Technique: Pursed-Lip Breathing

There are many advantages to the pursed lip breathing technique. It is simple to do. In fact, many people intuitively use this method of breathing when they are breathless. It can be used when you are at rest, as well as when you are active. This breathing technique is perfect for when you are climbing stair since it increases your blood oxygen levels.

Here’s how you do it:

  1. Relax
  2. With your mouth closed, inhale through your nose. Count 2-4 seconds as you breathe in.
  3. Now, purse your lips (as if you’re going to drink from a straw).
  4. Exhale slowly through your pursed lips. Count 6-8 seconds as you breathe out.
  5. Repeat as often as you need.
Breathing Technique
Courtesy of the Lung Cancer Alliance

Breathing Technique: Diaphragmatic Breathing

Most people breathe wrong. When they take in a breath, their stomach contracts as they fill their lungs. That’s not the way we were created to breathe. The next time you get to see a baby lying on its back, watch him or her breathe. What do you notice? Their tummy rises as they inhale and sinks as they exhale. That’s because their diaphragm is doing its job the way it was meant to. Check out the diagram below to see what I mean.

By using the diagrammatic breathing technique, you will strengthen your diaphragm and reduce breathlessness, long term.

Bonus: This not only helps with breathing but also with pain control. Because of chronic pain, I go to a pain clinic. In physical therapy, this was the first thing they taught me. Pain perception and pain threshold are both affected by relaxation and the use of the diaphragmatic breathing technique.

Breathing Technique
Courtesy of The Lung Cancer Alliance
Breathing Technique
By John Pierce (Own work) , via Wikimedia Commons

Positioning: Leaning Over

Leaning over helps you to relax your shoulders and upper chest so that your diaphragm can expand opening up your lungs. There are several ways you can do this.

  • Leaning over a grocery cart while shopping
  • Lean over the back of a stable chair.
  • Rest your head on a pillow while seated at a table.

Don’t bend over too far, or you will make it harder for your diaphragm to do its job.

Breathing Technique
Courtesy of The Lung Cancer Alliance

Tricking Your Brain:

One interesting intervention involves using a hand-held battery-operated fan.

  • Aim the fan at your nose/face.
  • Hold the fan 6 inches away.
  • Continue to have the fan blowing on your face for 5 minutes.

It’s believed that the effect of the air stimulates your facial nerves, changes the perception of breathlessness in their brain.

Here is a highly recommended fan on Amazon:
VersionTech Multipurpose Collapsible Portable Fan Outdoor Fan Clip Fan Desktop Fan(3 Speed, Black)

Relaxation technique: Progressive Muscle Relaxation

This can be used in conjunction with the diaphragmatic breathing technique.

Progressive muscle relaxation is just that—you progress through your body, relaxing your muscles one at a time until you are completely relaxed. This reduces anxiety, helping you to breathe better. This has the same pain relieving bonus as the diaphragmatic breathing technique.

Often this is done by listening to a recording which prompts you to imagine… After you’ve done this a few times, you will be familiar with it and will be able to do it at any time you need to even if you don’t have a recording to listen to.

Here are the basics of PMR:

  • Either lie down or sit in a comfortable chair and relax.
  • Take a few deep breaths by using the diaphragmatic breathing technique.
  • Focus on your toes. Scrunch them up, and then release.
  • Next, tense your ankles and release.
  • As you move through the body, you will repeat this. After releasing, you will keep that part of the body relaxed as you progress through the rest of your muscles. Take a deep breath between each muscle group.
  • Tighten and then release your calf muscles, thigh muscles, your buttocks, and pelvic area.
  • Now, breathe deeply in, and as you breathe out, slowly relax and release any tension you may have in your back.
  • Lift your shoulders and then release completely.
  • Now relax your neck. Gently move your head from side to side.
  • Tighten and release your jaw muscles.
  • Finally, the top of your head. Imagine all the tension in your body has floated out of the top of your head, leaving you relaxed and refreshed.
  • Finish with some more deep breaths. If you are able, stay in this position for a few more minutes of calm and relaxation.

One of my favorite PMR scripts is called “Anesthesia.”  It uses the same concept as the one above, except instead of tensing the muscles, you imagine each part of the body is dipped into a bowl of anesthesia, causing it to fall asleep. It’s so relaxing you just might fall asleep afterward. I once relaxed this way while getting a tooth pulled!

Other techniques include meditation, guided imagery, and acupressure/acupuncture etc.

Check out this post I wrote for the A to Z Blogging Challenge on Progressive Muscle Relaxation.

Planning: Energy Conservation

One thing cancer patients learn quickly is the importance of conserving their energy. This involves scrutinizing your schedule to ensure it isn’t too full.

  1. Plan your week so that you don’t have more obligations than you can handle each day.
  2. Plan your day according to your priorities. What:
    • do you need to accomplish?
    • would you like to accomplish?
    • can wait until another time if you can’t get to everything?
  1. Pace yourself.
    • Think about the big picture.
    • How will a morning appointment affect the rest of your day?
  2. Plan Your Position.
    • Consider where and when you will be able to sit throughout the day.
    • Getting a shower seat can be helpful when just taking a shower wears you out.
    • Some people get a walker, to always have a seat when they need one. Standing in line can be particularly difficult because there is nowhere to sit.
    • For things like vacations and state fairs, nothing beats a scooter. There are scooter rentals available everywhere. They will even deliver and pick up at hotels.

Your Environment

Avoid environmental triggers which lead to shortness of breath.

  • Smoking
  • Air pollutants
  • Allergens
  • extreme temperatures (Humidity, Cold)

A scarf or face mask can be helpful for reducing the impact of these triggers. In Minnesota, the cold winter air was very hard on my husband’s breathing. It sent him into terrible coughing fits. He began to use a face mask like doctors use. This made a big difference.

Many Tools for Many Factors

Learn multiple approaches to managing breathlessness and what learns best for you. You will have a variety of ways for dealing with the various things that contribute to shortness of breath.

Next time…

We will look at exercises that can reduce the impact of breathlessness on your life.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

Dr. Lynn Reinke, Ph.D., ARNP, FAAN (University of Washington) is a nurse practitioner, recognized nationally and internationally as a dyspnea crisis management expert.

 

 


fatigue is why cancer patients are so tired all the time

This is a picture of my husband, Dan, during a 2-hour visit to the American Swedish Institute in Minneapolis. He became so tired on this trip, that he had to lay down. Most people experience fatigue at some point in their lives, but it usually doesn’t last long. Once you sleep or even just quietly rest for a while, the fatigue goes away and you feel refreshed. Have you ever wondered why cancer patients are always so tired?

Healing takes energy

I remember the fatigue of early pregnancy. When I asked my doctor about it, he said that building a human being within my body was the equivalent of climbing a mountain. I had never thought of it that way. It takes that same energy to fight off a deadly disease! Cells are the building blocks of life, and apparently, they are heavy to hoist! That’s why cancer patients are always so tired.

Treatment is a major reason why cancer patients are so tired

The first cancer treatment that doctors prescribed for Dan was a targeted treatment called, Tarceva. It’s considered an easier treatment than traditional chemotherapies. Yet, within a week, Dan felt completely drained.  “It’s like you’re a car that isn’t running on all cylinders,” he says. “It always feels like bedtime. You fool yourself into thinking, ‘I’ll just go to bed and rest up and then I’ll get up and do it.’” Dan chuckled. “Sure you will.”

Then, two years into his cancer journey, Dan’s doctor put him on a traditional chemotherapy, and things went from bad to worse. Taking a shower, using the bathroom, even eating, were exhausting. After a chemotherapy appointment, he would spend days in bed, only getting up when he absolutely needed to.

It became a cycle

He had no strength and no endurance.

It only got worse over time because he didn’t exercise much.

His muscles atrophied.

He had no strength and no endurance.

It only got worse over time because he didn’t exercise much.

His muscles atrophied.

With fatigue comes a lack of drive and desire to do anything

“You have stuff to do, but you don’t want to do anything,” he says. “If you try to push through anyway, you pay for it and end up in bed for a few days, so you live within the boundaries of the fatigue.”

This can lead to frustration, irritability, and depression. It can be hard at times to know whether what you’re experiencing is fatigue or depression since they share many of the same symptoms. This is one of the reasons it’s so important to discuss what you’re feeling with your doctor. While fatigue is one of the most common symptoms in cancer patients, it’s also one of the least discussed.

Mental Fatigue

Along with the physical fatigue, Dan also experienced mental fatigue. It was often hard to concentrate for any length of time. He describes it as having a cloudy mind. “It’s like your mind is yawning,” he said.

Talking to people was also difficult. Dan would push himself through a conversation in order to stay engaged, But, by the end of the conversation, he would realize that he was wiped out.

He knows he’s crossed the line when he can no longer think of the words he wants to say. He recalls a visit with a friend. “Twice during that conversation, I was convinced that nothing I said made any sense at all.’’

Over time, the fatigue got worse.

Dan used to enjoy going for walks and biking. After a year of treatment, Dan would walk to the end of the cul-de-sac in our neighborhood and had to rest. He just couldn’t keep going. walking up steps was hard. He was breathless all the time.

There are a lot of possible reasons why cancer patients are so tired. Doctors were especially concerned about Dan’s breathlessness and fatigue because he has lung cancer. They needed to know whether it was cancer or the treatment that was causing his shortness of breath and fatigue.

Dan’s doctor ordered lab work to make sure Dan didn’t have another underlying problem that needed to be addressed such as low blood counts or anemia. She checked his lung function and ran a CT scan to ensure that his cancer wasn’t progressing. After the doctor ruled out several possible reasons for fatigue, she said that his fatigue was due to his treatment.

Getting Some Pep

Dan asked for the drug, Ritalin. Ritalin is best known as an ADHD drug given to children. Ironically, it can give adults more energy. Ritalin is a controlled substance, and it certainly isn’t the answer for all fatigue. Only you and your doctor can decide on the best way to address you fatigue. For Dan, the fatigue was so debilitating that this was worth trying. And, it worked! It didn’t completely fix the problem, but it made a noticeable difference in his energy levels.

Dan also drinks a caffeinated beverage each evening with dinner. For most of us, this would cause disturbed sleep patterns. But it gave Dan a boost, just long enough to get through until bedtime.

Know your best time of day.

Dan learned that he functioned best an hour after waking up in the morning. By that time, he’s slept all night and then had a cup of coffee. This is the best time for him to do anything that requires a lot of energy or a clear head.

Dan also listens to what his body is saying. It’s not worth the consequences of ignoring it. When he plans his schedule, he knows that he can only do one thing each day. It might be visiting with a friend, a real estate appointment, or going to church. Dan has learned that if the day will involve expending more energy than normal, it will need to come from somewhere. To prepare, he rests both the day before and the day after.

Every treatment is different

They will all have one thing in common—fatigue. Dan isn’t on any treatment at this time, yet after over 5 years of various targeted treatments and chemotherapies, he still struggles with fatigue. Once you have cancer, and especially after years of treatment, you are never the same again. Finding ways of coping with cancer-related fatigue will go a long way toward enjoying life a lot more.

Now Available!!

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-07-23 07:00:18.

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