Category Archives: Caregivers


saying No

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 N for No: The Power of Saying No.

When you’re a caregiver, saying, no can be the difference between drowning in obligations and keeping your head above water. Even though it’s important, saying no might be a very difficult thing to do.

Saying No to Others

Saying no can often feel like you are disappointing someone. It’s especially difficult when you’ve been involved in the leadership of a group, or have been a committed member for a long time. It can be hard to find someone who’s willing to step up to the plate and take on your responsibility. And, it’s always a good cause, whether it’s being on the church bake sale committee or your son’s Cub Scout den leader. People will understand, though. And sometimes, other people need a chance to step into these roles. You taking a break might be just the opportunity they need to get out of their comfort zone and contribute.

The People You Love

Saying no to the people close to you can be even more difficult than taking a break from church and civic groups. Your best friend, who can’t find anyone else for to dog-sit for the weekend, might turn to you for help. How do you say, “no?”

“No. I wish I could help, but I can’t.”

And don’t add and apologetic, “sorry.” You have nothing to be sorry about. Once your friend remembers all that you are dealing with, she will completely understand.

Saying No to Your Kids

Most adults will be sensitive to why you are saying no. Kids aren’t always as understanding. They are giving up a lot during this time. Sit down as a family and decide what the priorities are. Look at your family calendar together (including medical appointments). Look at your resources. Ask your support system for help getting your kids to and from the activities that you decide to commit to. Using a tool such as CaringBridge’s Task Planner can be very helpful with this.

Saying No

Burnout Prevention

When you became a caregiver, you got a new full-time job. You can’t add that commitment of time and energy to your life without dropping some other obligations. This doesn’t mean that you quit everything, though. Find something that you really enjoy doing for yourself. It might be a weekly coffee date with your best friend or an occasional spa day to relax and rejuvenate. It should be something you look forward to; something that feeds you rather than drains you.

The power of No

It’s not terrible for people to ask you if you want to do “this” or participate in “that.” They don’t want to offend you by taking away your right to decide for yourself. In fact, saying no can be something that’s very therapeutic. You may not have control over a lot of things when you are dealing with cancer, but you can sure say no to heading up the church picnic planning committee. Saying no gives you some control over your calendar. So instead of feeling bad about it, feel powerful!

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

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 2018-04-16 07:00:17.


Office Visit

There’s a difference between a general physical and a regular office visit. Knowing the difference can save you a lot of frustration when dealing with your doctor.

What’s an office visit?

An office visit is when you will discuss a new or existing health problem. You may get additional tests run or a referral to a specialist who deals with this problem specifically. Your doctor may prescribe a medication to treat the problem or reassess an existing prescription. This is also the type of visit you have when you want to talk about several vague problems that you’re concerned might add up to something more serious.

Office Visit

What’s a general physical?

A physical is all about preventive healthcare. Regular screenings and a general review of your current medical problems and prescriptions will happen at an annual exam. This is the appointment when your doctor will assess things like how your diet and exercise are affecting your health and what you can do to improve these things. You will get any necessary immunizations at this visit. For this reason, patients often schedule their general physical in the fall so they can get the flu shot without scheduling a special appointment. The key thing here is that physicals deal with the well-being of a person who is generally healthy.

Where the confusion comes in

If you go to your doctor for an ear infection, you will be scheduled for an office visit. You can’t expect your doctor to discuss how your diet may be contributing to iron deficiency to any great length at this visit.

Likewise, don’t schedule a physical to save yourself a co-pay (often insurance companies don’t charge a co-pay for a physical) when you want to discuss your chronic headaches.

How often should I get a general physical?

  • Ages 19-21, once every 2-3 yearsPhysical
  • Ages 22-64, once every 1-3 years
  • Over age 65, once a year

Of course, if you have certain risk factors such as diabetes, depression, smoking etc., your doctor may recommend more frequent physicals.

Why can’t I just talk about what’s going on with my health?

You can, but you have to understand that you might need to schedule more than one appointment if you want your concerns to get the attention they deserve. That’s because of the way appointments are scheduled. The reason for this scheduling system is proper billing, and allotting enough time for each of the doctor’s patient’s needs.

An example:

If Mrs. X comes in for an appointment about her ear infection, she is given a 10-minute appointment. She may be in the office for 30 minutes, but she gets 10 minutes with the doctor. When the doctor gets into the room she springs on him that she is also dealing with chronic incontinence (inability to control her bladder). That’s an entirely different problem that probably requires a urologist. SO, the doctor doesn’t even talk to her about the incontinence other than to give her a referral to the urologist, and he gives her a prescription for an antibiotic for her ear infection. Mrs. X feels like he glossed over her problems. In fact, the doctor did the best thing he could do (albeit in a rushed manner) because he had to fit 2 problems into 1 appointment slot.

If your doctor refers you to a specialist

Sometimes patients feel like their doctor is pushing them off to another doctor because they don’t want to deal with them. Nothing could be farther from the truth. In fact, seeing a specialist is the best thing you can do if you have a specialized problem. For example, if you suffer from chronic headaches, a neurologist may be the best person to assess and treat the problem.

If you would like to get more information on how to get more out of your doctor appointments, sign up for the FREE Appointment 101 series!

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

The Erickson Family, Photo by Everbranch Photography

Originally posted 2017-12-16 15:55:06.


recurrence

The metaphor of a rollercoaster is often used to describe cancer, and for good reason. The ups and downs of your emotions, your schedule and the status of your health affect a patient and their family from the moment you suspect there’s a problem. This is especially hard for children, who have far less information than adults do, about what’s happening, They depend on their parents to help them know how to respond to these peaks and valleys. The first thing you can do to help your children through a recurrence of your cancer is to assess how you’re handling things.

The good times

After enduring the hard times of cancer treatment and finally being declared NED, in remission, or even “cancer-free,” you want to celebrate. At the very least, you want to breathe a sigh of relief and go back to life as normal. Thankfully, you are soon feeling like the old you. But still, it’s hard. Every twinge of pain makes you wonder if it’s back. Afterall, everyone responds differently to various forms of treatment.

Just as you rely on your care team, they rely on you to communicate with them in order to catch a recurrence of cancer. Just like the first time you go through treatment, early detection of disease activity is crucial. You dread your return appointments to the doctor. What if they find something?

Then, One day they do

The results of a scan come back and the doctor tells you it’s a recurrence. The rug is pulled out from under your feet. It feels very much like the first time the doctor told you it was cancer. You have the same fears and questions as you did when cancer first came in your life, except now, you’re more physically beaten up from various treatments. You may also be running out of treatment options. Your kids are older and very aware of the difficulties that come with each new treatment plan.

My Tip

We’ve always tried to have another treatment option waiting in the wings so that if the current treatment isn’t working, we know what the next step is. That’s helped us to feel less overwhelmed at scan time. This time, though, we have no idea what happens next.

Keeping in touch with your care team

It’s important that you have a good relationship with your medical team. If you feel you can trust them, it is much easier to walk into the unknown. They’ll help you to know whether side effects are temporary, how long they might last, and if a side effect warrants going off of a drug.

Knowing that you trust your medical team will help your children to feel better about things. It’s a good idea to periodically clarify your goals with your care team.

  • Is your cancer (still) curable?
  • What kind of life extension does your doctor think you can get from a given treatment?
  • What is the plan, if this treatment doesn’t work?
  • How can you relieve pain and other side effects?

All of these are things are important to know as you’re weighing your treatment options. Your children will also want to know about these things, especially if they are school age or older.

Only you can decide what is right for you and your family. Even when the medical options run out, or you choose not to pursue them, you can still have quality time with your family.

A Second opinion never hurts.

Whether you’ve just been diagnosed, or you are having a recurrence of your cancer, it’s your life on the line. That being said, it is very likely they will affirm what your doctor is doing. That affirmation can go a long way toward you feeling comfortable with your treatment and building trust with your medical team. Make sure that you let them know about your goals for treatment and bring a full set of medical records with you.

Be prepared

When starting a new course of treatment, make sure that you have the proper medications on hand to control potential side effects you may experience over the weekend, or in the middle of the night when it’s more difficult to reach your doctor. You don’t need to suffer. There are ways to alleviate the side effects of treatment as well as the symptoms of the disease. In order for your doctor or palliative care specialist to best help you, you need to tell them if you are having problems.

The effect of recurrence on your family

Our daughter, Emily described the feeling of recurrence from the viewpoint Emily Ericksonof a patient’s child. “Can’t he just be okay? I just want him to be okay. It really is a roller coaster of emotions for us [kids} as well. If you have your own issues that you’re dealing with, they become maximized with each recurrence.”

This is true. Examining the impact of recurrence on survivors of cancer and their family members, it has been observed that, “Cancer recurrence is described as one of the most stressful phases of cancer. Recurrence brings back many negative emotions, which are different and may be more intense than those after the first diagnosis of cancer. Survivors and their family members have to deal with new psychological distress.” (1)

Teach your children well

It’s hard to go back to the grind of treatment or change to a new one with uncertain side effects and results. Enduring another course of cancer treatment is quite a lesson in delayed gratification, for your children. It shows them what you are willing to do for a time (now), in the hope of having more quality time with them, later.

Recurrence doesn’t mean it’s the end: Our Story

My husband gets his treatment from the University of Minnesota. When he was first diagnosed, we went to the Mayo Clinic in Rochester, MN with the blessing of his oncologist. The Mayo, in turn, said he couldn’t possibly be getting better care. This helped us feel secure with his treatment plan. This made it worth getting a second opinion, even though it didn’t change his actual treatment.

We put on brave faces for our kids. Still, they were crushed when I told them about the scan results. They’d had four years on this roller coaster. During that time, they’d made many friends with parents who have cancer. They had seen some of those friends lose a parent to cancer.

We had a month to absorb the shock. Dan took a couple of short trips that needed to happen before he started treatment again. Melissa Turgeon from the Angel Foundation came to our home with an intern and a photographer and gave us some amazing memories. They made plaster molds of Dan’s hand and of our hands together. The photographer captured those moments as well as some very fun family pictures. We were preparing for the end of those kinds of good times.

Plaster Casts

When I told the girls, they were happy but hesitant to get too excited. One of our daughters said. “We’ve just seen this so many times; up and down, up and down.” The girls were now older and more experienced with this dreaded disease. They knew what was ahead. We had plaster casts made of Dan’s hands and one of his hand and mine together. The Angel Foundation arranged to have a photographer capture our family on film before things changed…again.

Melissa Turgeon from the Angel Foundation made plaster casts of Dan’s hands. Photo by Jim Bovine.

Surprise!

Then, Dan went back in for a pre-chemo CT scan, just to get a baseline of where he was. The cancer that was on the previous month’s scan was mostly gone! So, back on the Tagrisso Dan went.

After 2 years of Tagrisso, the cancer again progressed. Gemzar and Cisplatin were used for a while, but it’s no longer responding to treatment and the University of Minnesota has run out of options for him.

The end of the line?

Having nothing left with which to barricade the door to death is frightening. It can feel like the end of the line. Dan will return to the Mayo Clinic in the hope that they will have an experimental treatment that he can try. The treatment might work, but it might not.

It really is a roller coaster.

It’s okay to grieve

While it is best if your kids see you as being in control of your emotions so that they aren’t afraid, it is still okay to grieve. In fact, it is very healthy. You may feel frustrated by the news of recurrence. You’ve done everything that you were supposed to do and now you are back in the chemo chair.

Often, everyone in the family is trying to be strong, leaving others in the family to wonder if they are the only one hurting and if it’s even okay to feel like they do. It’s helpful for families to take some time to talk together about their feelings. It can help each member to know that they aren’t the only one who is sad (or angry or frustrated, etc.) about the recurrence. Then, you can roll up your sleeves and move forward in the way that is best for you and your family.

More…

For more information about how to help your family through your cancer journey, check out my latest book, Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer. It’s available in paperback and Kindle!

Buy it TODAY!

 

 

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

The Erickson Family

Footnotes:

  1. ‘Again’: the impact of recurrence on survivors of cancer and family members.  2010 Jul;19(13-14):2048-56. doi: 10.1111/j.1365-2702.2009.03145.x. Vivar CGWhyte DAMcQueen A.

Originally posted 2018-08-06 07:00:01.


Making Memories

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 M for Memories & Terminal Cancer.

When someone you love is terminally ill, making memories becomes a priority. Recording memories is important, too. Often caregivers hesitate to say that memories are the thing they want to make most. There is often concern that by talking this way, you will hurt the patient you are caring for. Maybe they will think that you’ve given up. The truth is, everyone is thinking about memories, but few people talk about it. That’s okay, to a point. When you know that time is limited, it’s important to help the patient reach their end of life goals.

Final Wishes

To prevent family discord, it’s essential that the patient, express their desires regarding everything from medical decisions to who they want at their bedside when the end comes.

They should have an Advanced Care Directive as well as a proxy (probably you, their caregiver) who can make medical decisions should the patient be unable to do so. Even with these valuable tools, it’s often difficult for family members to believe that the patient’s desires could be what they are. Hearing them from the patient’s own lips will go a long way toward helping other members of the family understand that you, the proxy, and medical team are honoring the patient’s wishes.

There is Always Hope—Hope Changes

People who are terminally ill often go from big hopes to being disappointed. They go from hoping for a cure to hoping for “quality of life.”

There’s a difference between curing and healing. We can be healed, even at the end of life. Healing is wholeness. It’s reconciliation between estranged family members. It’s forgiveness. There comes a time when we need to switch from treatment for curing to healing. Sometimes healing involves leaving lasting memories for posterity. Are there people you need to make peace with? Are there unspoken things you need to say? Include these on your list of goals.

Hospice

Hospice, as an approach, can enable a patient to look outside of the box and find other ways to reach these goals. Figure out a way to meet those goals despite death. For example, the patient can prepare cards for events such as their children’s birthdays, graduations, weddings, and other big events. You, as a caregiver can help the patient with this. How does he or she want to be remembered? How can you ensure they won’t be forgotten?

Live until you Die

Everyone has certain goals they’re holding on to. What are the goals of the loved one you are caring for? They may include a wedding he or she wants to attend, the birth of a grandchild, or a trip they want to take. These goals can strengthen their resolve to survive.

A lot of people avoid setting goals out of fear of failure. You can really set your heart and mind on achieving them when you say those goals aloud and write them down. Goals often change. Reassess them often and decide whether or not they are still a priority, or if they need to be adjusted, or let go of.

You and your loved one can hang on to hope that you’ll get to the wedding, or visit Italy. But, if you can’t, have a plan in place that will enable you to experience a taste of it. As a caregiver, you can work with your loved one’s care team and family members to help your loved one achieve as many of their goals as possible, making memories in the process.

Memories: Our Story

In the time we have had, Dan has spent time writing letters and making both video and audio recordings for his children and grandchildren. We have been intentional about making memories. We’ve had family pictures taken and even had casts of his hands made.

 “When you were born you were crying and everyone else was smiling. Live your life so at the end, you’re the one who is smiling and everyone else is crying.”

― Ralph Waldo Emerson

One thing that has helped Dan share his stories is The Memory Maker’s Journal. The questions in the journal will bring to mind memories of your family, your youth, your early adulthood, and the family you raised. This is perfect for recording the memories you would like to pass on to future generations. It also makes a great family activity. Ask loved ones these questions and record the stories of their life. Your experiences and your memories are yours alone until you share them with others. By making a record of them, you leave a part of your life to live, even beyond your years. The treasure that is locked inside of you is a gift you can give future generations.

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

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 2018-04-14 07:00:12.


Interpreter

Have you ever thought about what it’s like to have limited English speaking skills? How would you handle things like a doctor’s appointment? There are things such as disabilities, and being a Limited-English speaking person (or LEP), which can affect your communication with your health care team and your access to support services.  Today, we’re going to learn why an interpreter is a crucial part of health care for people who aren’t fluent in English.

18%, or 47 million people in 2000, spoke a Language other than English at home. 8.1% of the population, age 5 and older spoke English less than “very well” (2000 US Census)

Check-in Downstairs

A few years ago, our local clinic was getting a major renovation. For 2 years they jostled departments around and several times, even moved where patients checked in. When they moved the check-in desk from the 2nd floor to the 1st floor, I witnessed something that made me see how hard something as basic as a doctor’s appointment can be for someone who doesn’t speak English well.

Use an interpreter if English is a second language, to get the best care

I saw a little old lady who I would guess was from Russia or the eastern bloc. She made it all the way up to the second floor, pushing her walker an inch at a time, only to discover they weren’t doing check-ins there anymore. She tried to get the attention of the woman at the desk. Finally, the woman noticed her and said, “There was a sign downstairs. You have to go back down.” There was little sign of understanding. After some exchange, the little old lady returned to the first floor with great effort. Fifteen minutes later, she returned. Her doctor was on the second floor. She looked completely exhausted from the up and down and up again.

I imagined how hard it must be to immigrate as an old woman; a whole new country, a new language, and health problems, as well. She needed an interpreter.

Who has a right to a translator or interpreter*?

If you’re hearing impaired, under the Title III of the Americans with Disabilities Act (ADA), your health care provider must provide you with an interpreter, if you need one in order to clearly communicate with your healthcare provider.

Under Title VI of the Civil Rights Act of 1964, discrimination based on national origin is prohibited. Executive Order 13166 issued in 2000, says that people have a right to meaningful access to federally funded programs and activities. Many individual federal programs, states, and localities also have provisions requiring language services for LEP individuals. These provisions are valid, even in “English-only” states. For more information, check out the LEP.gov website.

*The difference between a translator and an interpreter is described well at Language Scientific’s website. Check it out.

What’s the process of getting a translator?

If you or a loved one needs these services, contact your health care provider prior to your appointment, to let them know. Don’t hire your own interpreter and expect to be reimbursed. Most medical facilities contract with a third-party company which provides translators and/or interpreters on an on-call, as needed basis, at no cost to the patient. Covering the cost of the interpreter is one of the normal costs of operating a business for your clinic or hospital.

Just say “NO”

Occasionally, a health care provider may try to encourage you to bring a family member or friend to your appointment as a way to “save costs.” Say no. It is difficult for family members and friends to be neutral and translate everything they hear. Using family and friends as interpreters can also have a negative effect on your patient confidentiality. Instead, if you are comfortable, bring a trusted friend with to your appointment to keep an ear out for anything that might be lost in translation.

Also, Medical Interpreters are qualified in ways which even someone who is bilingual can’t compare to. They have expert knowledge of proper medical terminology, enabling them to facilitate communication effectively. This saves time and prevents medical mistakes based on miscommunication. They are also available on-demand, night or day.

“But I don’t need an interpreter.”

You may be wondering how this pertains to you. First, I hope that I’ve opened your eyes to something that many of us know little about. It also illustrates a picture of health care for all of us. It is a specialized area that many people don’t fully understand. It’s like they are speaking one language and the doctors are speaking another. This causes confusion and miscommunication. These are the root of many frustrations in life. Never be afraid to ask for clarification when you don’t understand something your doctor says or does.

For more information on using an interpreter see:

Office of Inspector General, Guidance and Standards on Language Access Services: Medicare Providers (Department of Health & Human Services)

Also, if you would like to get more information on how to get more out of your doctor appointments, sign up for the FREE Appointment 101 series!

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

The Erickson Family, Photo by Everbranch Photography

Originally posted 2017-12-16 15:36:36.


Living with Cancer

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 L is for Living with Cancer.

What does a day in the life of a cancer patient look like? I’m asked this question a lot by people who want a better idea of how to support a loved one who’s living with cancer. A couple of years ago, I brought it up at the dinner table to see what our family thought.

Our 16 year old immediately said, “It depends on which day.”

My 19 year old said, “Which treatment.”

“And what he did the day before,” added our 12-year-old.”

Then they proceeded to list off all of the scenarios that we might happen to experience at any given time. I was surprised at their insights at such a young age. Kids who have a parent living with cancer quickly gain a keen understanding of its effects.

The past 5+ years of living with cancer, are divided up by treatment and side effect; hope and heartbreak.

Year One- A Year of Adjustment

In the beginning, living with cancer was overwhelming. It wasn’t just the physical, but also emotional well being that was in jeopardy.

Near the end of 2012, Dan began the targeted therapy called, Tarceva. He had a mouth so full of sores that he could no longer preach his sermons, so, in early 2013, we closed the church. He was heartbroken. We learned at that time how inundated patients and their families are with insensitive people. So many people think they know more about the patient’s cancer than the patient and their medical team.

After a few years of reflection, I wrote a book called, “Facing Cancer as A Friend: How to Support Someone who has Cancer.” The truth is, most people want to help, but they don’t know how. So my hope was to give people the knowledge they needed to help in a sensitive caring way, without being intimidated by the enormity of this disease.

Year Two- Fatigue and Weakness

By early 2014, Dan was still on the wonder drug that shrank his cancer to near-invisibility on scans. He’d become so fatigued and out of breath, that a walk around the neighborhood was difficult. Nothing excited him anymore because thinking about doing anything was overwhelming.

That was when embraced “one thing a day.” Each day, Dan could do one thing; a visit with a friend, do a real estate showing, attend a prayer meeting, Sunday morning church, etc. He had to decide what that day would allow, based on how he felt as well as what else was scheduled that week.

For example, if it was a big thing like a trip to the Minnesota State Fair (a must-not-miss), we would map out our day, making one strategic pass through the fair. The last portion of walking was taken care of by the SkyGlider, a chair lift type of ride that runs along a suspended cable over the fairgrounds. Dan would make sure to have plenty of pain medication on hand and drink a lot of caffeine. Big days like that meant also doing nothing the day before so he could rest, or the day after, so he could recuperate.

Resistance

If you had a sizable army, and you were waging a battle against an island–even a very large island, given the right weapons, you should be able to defeat it. This is what often happens when fighting cancer. Unfortunately, there are times when you are on the island. You realized too late that a rogue army was taking over all of the surrounding islands. By now, no matter how well you fight, and how strong your army is, you will eventually be overcome. The enemy has the advantage.

Can’t you just drop an atomic bomb?

That’s what I wanted to do when Dan found out he had cancer. but, Dan had metastatic cancer that had run rampant throughout his body via his lymphatic system. Because his body is the soil that cancer lives on, dropping an atomic bomb (if there were one for his cancer) would have to completely decimate him to kill every bit of cancer down to the cellular level. We couldn’t cut it out or “blast” it out. So we are left with keeping it at bay until eventually cancer’s reinforcements come in and gain an advantage, again.

A New Drug

Eventually, the cancer in Dan’s body eventually became resistant to the Tarceva. The next drug he was on, Afatinib, was similar to Tarceva in the way it worked. The oncologist hoped that it would be different enough to get past the resistant cells. This drug messed with his digestive system, so he had to regulate that with more pills. Those problems only led to more painful issues that can accompany prolonged digestive problems.

His toenails were always inflamed, and soon his fingers were as well, making typing nearly impossible and always painful. Getting dressed was often accompanied by a pained, “Ow!” He had to soak his nails twice a day in Epsom salts. It was the only time I could see the virtue in him wearing flip-flops (even then, it was questionable).

Living With Cancer Means Waiting

Waiting for scan results often fills patients and their families with an anxiety termed in the cancer world, “scanxiety.” Would we be able to keep going like we were, or would life and treatment take another detour through some unknown territory in a dark forest filled with “lions, tigers, and bears—oh my?” For all the problems Afatinib caused him, it didn’t do its job. On my birthday that year (while out to dinner), we checked our e-mail and found out the cancer was worse than when he was diagnosed 2 years earlier.

 

Brain Mets

Not only was cancer back and worse than ever, but it had also metastasized to his brain. To treat it, Dan had to have something called, “Gamma Knife” surgery at the University of Minnesota. This was essentially 200 concentrated beams of radiation focused on the tumor. Thankfully, it worked. Once cancer hits the brain, you feel like you’ve entered a whole new part of the journey. You feel vulnerable, living with cancer in your brain.

Year Three- Hard Core Chemo

Next, they pulled out the big guns. Carbo/Taxol. Those treatment days were full days; We came to the cancer center in the morning and didn’t leave until the end of the day. He would sleep in the chair hooked up to the IV, and I would sit in a folding chair with my Kindle. At noon, I’d run to the Subway shop to bring back lunch.

After that, he spent at least 16 hours a day in bed. On bad days, he would only get up for meals, and even then, he had a hard time eating, so he didn’t stay up long.

Pain

Within a couple of days, he would be in so much pain. It was like torture; Stabbing, throbbing pain in his bones that no amount of pain medication could control. He turned to ibuprofen which is a big “no-no” while on chemo, since it’s a blood thinner. It helped, though.

Nausea

Nausea plagued him day and night, often leaving him with the feeling that the whole world was spinning. He lost his hair, including the mustache he had donned for over 30 years. We had a head shaving day when the missing clumps made him look patchy. I have always given him his haircuts. That one was a hard one to get through.

Chemo Brain

Dan got major “chemo-brain” (a term given to the mental fog that hinders cognitive thinking and memory). When it was at its worst, he once asked me the same question 3 times in five minutes. He not only forgot the answer but that he had already asked the question.

Immune System Down

The worst, though, was when his immunity would plunge and he would get a raging fever that was nearly impossible to bring down. We had plenty of time racked up in the emergency room during those months. He missed church most Sundays, which was hard on him. Living with cancer didn’t feel much like living at that point.

Small Reprieves

During that time, some amazing people came alongside us, blessing us with meals during the week of treatment, and helping to transport our daughter to and from school. The third week, the week before he would have another treatment was often fairly good. He could visit with people and spend less time in bed.

An Easier Treatment that Didn’t Work

It was time for an easier treatment. Alimta was an infusion that only had us at the cancer center for half of the day if we scheduled it right. There were very few side effects. We hoped he could stay on it for a good, long time, but that wasn’t to be. The Alimta didn’t work, and the cancer was coming back.

Immunotherapy

Next, we would try immunotherapy. It was (and is) all the rage in cancer circles. It would harness the power of his own immune system to fight cancer. The Opdivo infusions only took up half a day as well, and he tolerated them at first…

Then came a cough. He could hardly talk without having to suppress it (or at least try to). He was constantly using lozenges to ease his urge to cough.  A cough was a known, side effect of the drug, in as many as 30% of patients. Theoretically, it would go away, once he went off of the drug. But, the drug was so new, it was hard to know for sure.

His cough got worse, and Dan became more isolated, Now, he could attend church, but he couldn’t sing. Visiting with friends was difficult because every word he spoke seemed to instigate a cough.

Year Four- Life and Death and Life

For our anniversary in 2016, Dan took me to a bed and breakfast. It was in a tugboat in St. Paul on the Mississippi. He planned the most romantic weekend.

The day we returned home, he went to bed and didn’t get up for 3 days, except to eat. The cancer was back. It had been having a party in Dan’s lungs while he was on Opdivo.

The pulmonologist began to talk to us about preparing for the end. She was candid and caring. I was broken. I had been on Dan’s case since his diagnosis to get some things prepared. It was hard for him to do because he never felt very good, and when he did, he wanted to live—not think about dying.

But he was… Right before my eyes, I was watching the love of my life slip away.

Speaker

Our Kids Coping With their Dad at his Sickest

Children often suffer in the shadows of a parent living with cancer. They feel powerless to do anything about it, and the adults in their lives often don’t know how to help them. Our youngest began to fall into the abyss of depression. She is on the autism spectrum and struggles with her emotions, anyway. This was too much. I took a break from anything that wasn’t essential. I needed to cherish every moment that I had left with Dan, and I couldn’t leave our daughter alone.

A social worker visited to see how the kids were coping, and what she could do to help. She gave them coloring books to express their emotions. It sounds like a simple thing, but it meant a lot to them.

Living with Cancer
Lung function tests

Home Health Care

We had home health care at that point. A nurse would visit each week, sometimes twice a week, to check his vitals. She talked to us about transitioning to hospice. The only hope we had of ending Dan’s cough was to get the cancer under control once again.

Iressa

We decided to try a new drug on the market.vIt was similar to the Tarceva that had helped him so much, in the beginning. Iressa helped him to breathe again for 2 weeks. During that time, they ran a new, genome test. The cancer in Dan’s body originally had a mutation called EGFR. Those cells, being smart, eventually turned themselves into a new mutation, known as T790M. A drug, fresh on the market called Tagrisso could treat both EGFR and T790M mutations. Tagrisso had just been fast-tracked and put on the market 3 months early–just in time to save Dan’s life. There was hope!

Gemzar/Cisplatin

It could take a couple of weeks for the Tagrisso to work, and Dan’s oncologist worried that he didn’t have enough time. He started receiving an infusion of a very old, harsh, (but effective) mix of Cisplatin and Gemzar chemo-once a week for 2 weeks, and then a week off. Dan’s immunity plummeted to a dangerously low level and after the 2nd treatment, they stopped.

Tagrisso

It was time to rely on the Tagrisso, alone. Soon, he was breathing again. His scans were looking remarkably better. In the beginning, he had lingering pneumonia which he caught when his immunities were so low. But, soon he was better and we were able to fly to California where we spent time with our daughter, son-in-law, and our beautiful twin grandsons.

We began taking walks again. We made lots more memories as a family. Dan started getting things in order for me in case things changed. Our experience has shown us that they do.

One day, we were having our morning coffee on the deck and he remarked that he has never been as aware of the amazing beauty of the world as he is now. I asked him why he thought that was. After thinking for a minute, he said,

“I think it’s from having a near death experience. Before, I had cancer, but my problems were the side effects of the drugs. It was more theoretical. But, not being able to breathe because of the cancer—that did something.”

Year Five- The Easiest Year

Last year, living with cancer was pretty much auto-pilot. Dan continued to have monthly appointments with his oncologist, monthly labs, and scans every three months. Aside from that, we tried to put the reality of living with cancer on the back burner as often as we could, Dan still suffered fatigue, pain, and weakness. He takes pain medication 24/7 to try to keep it under control.

To see a video of us talking about our experience with Tagrisso, check out my (future) post about making a video.

A Disturbing Scan

After five years living with cancer, using the best drugs available, things have again changed. Eventually, even the best drug stops working. Dan has had 3 rounds of Gemzar and Cisplatin. We recently got new scan results, ones we’ve been dreading. There has been some improvement, and just as much progression in his lungs as well, as a new metastasis on his T11 vertebra. This will mean more change. Our oncologist has nothing more to pull out of her bag of tricks, so she is sending us to the Mayo Clinic, in the hope that they might have an experimental treatment option.

So, what is a day like, living with cancer? Dan says, ”No matter how the day goes, one thing is consistent. It isn’t how it was before.”

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

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

The Erickson Family, Photo by Everbranch Photography

 

 

 

Originally posted 2018-04-13 07:00:55.


Advance Care Directive

What is an Advance Care Directive?

People often think of an advance care directive in the context of a terminal illness, such as cancer. But, this legal document should be in place for unexpected emergencies, such as car accidents, as well. It is also known as a healthcare declaration, a directive to physicians, a medical directive, a health care directive, and a living will. The exact terminology often depends on where you live.

Planning Ahead: Yes, You Do Need One!

Advance care directives are a powerful tool. They take away guilt and resentment that survivors may have regarding how someone has died. You’re able to be very specific about your feelings regarding end-of-life care, removing any doubts that various family members may have. This is what most people associate with an advance care directive (A.K.A. Living Will).

You should create one as soon as possible, ideally, before you are ever faced with a life-threatening accident or illness. Once you are ill, the process of putting together your advance care directive can seem emotionally overwhelming. It’ll make you acutely aware of the fact that you will, in fact, die long before you want to. It’s real, rather than theoretical, as I would be if you weren’t facing death. It doesn’t matter whether you’ve just been diagnosed or you’ve been fighting your cancer for a long time and can feel death knocking on the door of your life.

Advance Care Directive

Our Story

In the beginning of Dan’s cancer journey, he had a very hard time approaching the advance care directive. So, I got a booklet[1] and went through 2-3 questions each day with him. I asked him the questions and he answered. When I needed some things to be clarified I asked further questions so that there was no doubt in my mind as to what his wishes were. I wrote all of his answers down as he gave them.

This process took the logistical burden off of him and it made the process less overwhelming. We always stopped after 2 or 3 questions so it didn’t feel so awful. The other benefit to this was that he and I were communicating about his wishes. This is essential since I will need to ensure they were carried out as he wished. I was listed as his proxy, giving me the final say about his health care.

Power of Attorney*

Power of attorney gives someone you choose, the right to act on your behalf in financial or real estate issues. This sometimes scares people. Handing over that kind of legal power is a big deal. It’s actually not as concerning as it sounds. For one thing, you will choose someone who you really trust.

Secondly, there are different types of power of attorney. In real estate, we often have clients who are unable to be at closing. They give someone they trust, a limited, or “specific,” power of attorney. This allows the proxy to sign legal documents on their behalf in that instance only, or in all legal matters that are defined, for a limited period of time.

In most cases, power of attorney will end if it expires during the time the person granting it becomes incapacitated. So how does this help you in a medical emergency? You will want to make sure that you have a durable power of attorney in place. This is done by adding additional language to reflect your wishes.

Advance Directive

Medical Power of Attorney*

Power of attorney documents ensure your financial and legal issues will be handled if you are unable to, but what about medical decisions that need to be made? This is where the medical power of attorney comes into play. This is also known as durable power of attorney for healthcare, healthcare proxy, or healthcare agent. Just as in a power of attorney, you’ll want to make sure the proxy you choose is someone you trust to carry out your medical decisions if you are unable to.

Make it Legal*

No matter what, you should get in touch with an attorney who can give you the specific legal information that fits your situation. Laws vary from state to state, so you always want to make sure you are following your local laws. National Cancer Legal Services Network offers referrals to free legal services programs so that people affected by cancer may focus on medical care and their quality of life.

Your Proxy and Other Loved Ones

“Because I love you, I need to know what you want. Because you love me, you need to let me know, so I can know what to do.” -Dr. Vic Sandler

When looking for a proxy (which you’ll need), a spouse is ideal. Whoever you choose, they will need to be someone whom you can count on to carry out your wishes. They may need to be strong in the midst of other loved ones who don’t understand the decisions you’ve made.

Often, a patient decides that there is a point at which they no longer wish to keep fighting. This may be at the point when they are no longer able to express their wishes and must count on a proxy to carry them out. This may mean not opting for ventilation machines or feeding tubes.

The thought of losing the patient can be unbearable to family and friends. They may get angry with the proxy for making decisions that the patient would have wanted. The best prevention for this is to make it very clear to everyone in your family and close circle of friends what your wishes are. Also, tell your loved ones and your proxy, that you’re so grateful to have a proxy you can count on to carry your wishes out. Hearing these things from your lips will go a long way toward giving all of your loved one’s peace of mind.

It’s important that you talk to your children about this. Explain to them, in an age-appropriate way, why you’re making the decisions you’re making. They need to know that you’d rather be with them, but that your time is becoming short. You want the time you have together to be good time.

Family Care Conference

Your Advance Care Directive is More than Medical

After you’ve written or filled out your Advance care directive you’ll need to have it notarized. You then give it to your clinic to keep on file in the event there is a question of how to proceed near the end of your life.

The advance care directive addresses your specific health care desires as you near the end of life, but it isn’t limited to medical decisions. As part of this process, you can also express what you’d like done in your last days and hours.

  • Who’s going to be at your bedside?
  • Do you want everyone you know, there? Do you want time reserved for your closest family members?
  • Is there anyone you don’t want there?
  • Would you like music played?
  • Is there a special pet you’d like to hold?
  • How would you like to be dressed?
  • Do you wish to have a member of the clergy there? Anyone in particular?

The more, well thought out the process of death is, the better the death can be. The better your death is, the easier it is for your family to cope after you’re gone.

Footnotes:

[1] Advance care directive paperwork (or booklets) are usually available from your doctor’s office. While not essential, a pre-designed booklet made specifically for planning your advance care directive can be extremely helpful in this process. It will ensure that you have covered all of the bases and guide you through the process.

*Note: Please see our Legal Disclaimer.

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

The Erickson Family, Photo by Everbranch Photography

Originally posted 2017-12-14 02:52:41.


Understand Death

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 K for How Kids Understand Death. This post is an excerpt from my upcoming book, Facing Cancer as a Parent: Helping your Child Cope with Your Cancer.

In a recent post, we looked at Grief in Children from the viewpoint that grieving begins with a loss. It’s important to understand death isn’t the only thing reason we grieve. Unfortunately, for many families, the cancer journey does end in death. What you see in your child as they cope with death will depend largely on their age and how they understand death.

Infants, up to 2 years old

Infants won’t understand death at all, but that doesn’t mean that they aren’t affected by it. They know that the parent they loved is no longer there. You may even see an older infant looking for their “missing” parent. Even more than the absence of their parent, infants are affected by the sadness of their surviving parent.

What you can expect to see from your child as they cope with death as an infant up to 2 years old:

  • increased crying
  • irritability
  • changes in sleeping habits.
  • changes in eating habits

Preschool-age children (3 to 6 years)

Children ages 3-6 are curious about death, but they don’t understand death as a permanent condition. It’s common for them to think that someone who’s died is in a state similar to sleep. They may believe it’s reversible and that their parent will wake up. They might even think that if they’re good enough, they can make the person who died come back.

Children tend to center the death (like everything else) on themselves. If they have ever wished their parent would go away or had been “bad,” they may feel guilty and responsible for their parent’s death. It’s very difficult for children this age to put their feelings into words.

As you would expect, children who lose a parent are apt to worry about who will take care of them. They may question whether their other family members are safe, or if one day, they too will die, leaving the child behind. And, like children younger than them, they’re very affected by the sadness of surviving family members.

What you can expect to see from your child as they cope with death as a preschooler:

  • symptoms of regression
  • bed-wetting
  • thumb-sucking
  • acting out in aggression
  • irritability
  • difficulty sleeping

Our Story

I met, fell in love with, and married Dan when my daughters were young. before that, I was married to my children’s biological father. He left us, After that, for weeks, one of my daughters kept saying he had been shot. No matter what I said to try to convince her otherwise, she thought he had died. I took them to our pastor who began to talk to them and asked them questions. He asked her why she thought that he was dead. She said, “It’s like in Narnia. The dad went to war and was shot. The children were sad and the mom cried all the time.” My daughters didn’t understand what divorce was but they had seen in a movie, something that resonated with how they were feeling. They drew their own conclusions from that. This taught me a big lesson about children’s perceptions. This taught me a big lesson about children’s perceptions.

Be aware that your young child may not understand death accurately. Asking gentle questions can be very illuminating.

School-age children (6 to 12 years)

By the time your child reaches the ages of 6-12, they understand death is final. As they get older, they’ll understand death is unavoidable and happens to everyone at some point. Death itself is often perceived by children this age, symbolically, such as a skeleton, the Grim Reaper, or a more religious manifestation, such as an angel or spirit. Children this age will still struggle to talk about their feelings.

They will experience many emotions including guilt and shame, since they may worry that they’re to blame for their loved one’s death. They may also feel anger and sadness. And, most likely, they’ll experience anxiety and fear about their future and even their own death. They’re still likely to worry about who will take care of them. This can bring about feelings of insecurity, clingy behavior.

Children this age are often interested in the specific details of death and what happens to the body after death. This can even be seen when a pet dies. Far from being gruesome, the child may want to see the dead pet and know more clearly what has happened. While adults may feel uncomfortable with this, it’s quite natural, and a part of coming to terms with the death. For this reason, you shouldn’t be overly concerned if the child wants to see or touch their deceased parent.

What you can expect to see from your child as they cope with death as a school-aged child, 6-12 years old:

  • symptoms that their younger counterparts experience
  • trouble in school
  • withdrawal from friends and/or family

Our Story

When our kids were younger, they had a pet betta fish. After about 6 months, Huckleberry did what all fish eventually do, and died. I was concerned that it would upset the kids, so I tossed the fish into the brush outside of our home.

Our daughter became frantic at seeing the empty fish bowl. She cried and cried, demanding to see her little Huckleberry. Finally, I relented and told her where he was. She rushed out in her bare feet, searching through the leaves and branches. Finally, she found him. She looked at him for a few minutes in silence and then returned as calm as could be. She wiped her eyes and returned to playing.

Teenagers (13 to 18 years)

While most teenagers understand death in like adults do, when it comes to death, they don’t behave like an adult. They’ll experience a range of emotions, and don’t have the depth of experience or the coping skills needed to handle them. Teens don’t tend to ask for help. Instead, you’ll need to recognize that they’re struggling.

Signs to watch for in your child as they cope with death as a teenager, include:

  • Lashing out at family members or friends.
  • Reckless and/or impulsive behavior
  • Substance use/abuse
  • Promiscuity.
  • Questioning God, their faith, and/or their understanding of the world
  • Withdrawing from the family to be alone
  • Spending more time with friends (not always a bad thing, but can be an indicator that they are having difficulty dealing with what’s happening)

Because they want to feel independent, teens sometimes want to emotionally and physically separate from their family. They may not be receptive to support from adult family members. It can be helpful to enlist the help of other adults who can help identify when a problem is occurring. Communicate regularly with their teachers, coaches, and pastors who can help during this time.

College Age

Despite being considered legal adults, college-aged children are still developing emotionally. Their brain isn’t fully formed until they are 25 years old. To make matters even more complicated, these are the years when many of them are in college or starting their career. Whether they live on campus, commute, or have decided to work full time, they have a lot that they are juggling.

Thankfully, many colleges have academic and crisis counselors on staff. Students should contact them early on to see what options they have regarding their classes, should a crisis such as the death of a parent, arise. Some schools even offer tuition insurance for a medical crisis. Check with the school to find out details, including any potential issues with their scholarships. Make sure any insurance you purchase will cover the any needed time off from school for your child as they cope with death.

Our daughter, Summer

Summer and Dan August 2016
Photo by Jim Bovin

Our oldest daughter, Summer had already completed 2 years of college by the time she was 18 through a

program the State of Minnesota has known as Post Secondary Options (PSEO). She then transferred to the University of St. Thomas where she would get her 4-year degree.

We knew that during her time there, it was likely her dad would die. How would she cope with that? It’s one thing to deal with the pressures of college when you have a sick parent. It’s a whole other matter to try to focus on an intensive time of studies when your parent dies.

Summer spoke with her academic counselor as well as the student counselor who deals with issues such as grief. She began to assemble her support system at school.

School can be a welcome escape for your child as they cope with death. Or, it can add to the overwhelming feelings they may be experiencing. How your child deals with the loss of a parent will be as individual as he or she is.

Helping your child cope with and understand death

It’s common for surviving parents, family members and friends to worry about how their grief will affect the kids. They worry that their children will be damaged by their own intense feelings about the loss. Because of this, some adults will try to hide their emotions while around children. This is unnecessary and can be harmful in the long run—for everyone.

Children look for cues from adults for how to react to what’s happening around them. There’s nothing wrong with crying or other expressions of intense feelings after a loved one’s death. These are normal expressions of how people feel when they lose someone important to them.

The way you, and others, react to your child as they cope with death through the mourning process, will send a message to them, whether you intend to or not. For example. Telling a child not to cry, can cause them to feel like their feelings are wrong. This denies them the opportunity to work through the variety of emotions they are feeling, related to the loss.

Don’t try to hide your feelings

If family members and friends try too hard to hide their feelings, the child may think it’s wrong to be open about their own feelings. Instead of being able to share their feelings and get the needed support, the child keeps it inside and doubts the validity of their feelings.

Genuine feelings of sadness, tears, and anger are normal reactions for anyone who’s grieving. While acting hysterical may frighten a child, as long as their security needs are being met, seeing your grief being expressed won’t damage them.

In the same way, telling them that they should be more upset can cause him or her to feel guilty. It implies they are a bad person for not responding to the loss “appropriately.” Sometimes, outward displays of grief are delayed, or even suppressed due to mixed signals they’ve gotten in the past about whether or not it’s okay to cry. It’s important that your children understand death is a painful loss and it’s okay to respond to it in a way that feels authentic.

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

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 2018-04-12 07:00:34.

A to Z Challenge Survivor

Newsletter

Find out when I post a new blog.

Archives

Categories

Grab a copy of Facing Cancer as a Friend!

Get the Memory Maker’s Journal

%d bloggers like this: