HIPPA

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 H for Understanding HIPPA.

Before you or your loved one ever get to see a doctor before they’ll even bring you back to an appointment room, the receptionist is going to slide a bunch of forms across the desk and ask you to sign. Some of them are forms that record your health history. Among these is a form about who the clinic can talk to about your personal information. This is called HIPPA.

Sign Here Please

HIPPA is the law that protects patient privacy. Unless a patient signs these forms and gives permission for the doctor to tell you anything about the patient’s health, they can’t tell you anything. To understand why your loved one’s doctor’s office may sometimes get a little touchy about this, it’s important to understand HIPPA.

Why HIPPA Matters

Health care providers can’t share a patient’s information with anyone without permission from the patient. Not their insurance company, another health care provider, employer, neighbor, kids or spouse—no one. That’s why they make you sign a bunch of paperwork every year, giving them permission to share information with your insurance company so that your bills can get paid.

If your loved one wants you, as their caregiver, to be able to talk to their doctor about your health care (and they should) they will need to give written permission.HIPPA

What is HIPPA, anyway?

HIPPA is an acronym that stands for the Health Insurance Portability and Accountability Act. HIPPA established a generally accepted set of security standards or requirements for protecting health information which didn’t exist prior to 1996 in the healthcare industry. This became even more important as technology evolved and health care providers moved to computer-based systems.
While computers are an easy and efficient way to document, store and transmit your medical records, those records are also more vulnerable to a breach of privacy. While this was one of the things which drew attention to the importance of privacy in regards to our health care. HIPPA was enacted to protect patients’ healthcare information and privacy in any and all ways that information is shared, whether it be paper, digital, phone, or person to person.

This is a very brief overview of HIPPA. To learn more visit hhs.gov.

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 2018-04-09 07:00:11.


Robin : A Game about fatigue

How can a video game improve our understanding of what it is like to live with debilitating fatigue? I recently had the opportunity to find out. My daughter, Sam, recommended that I check out a game called Robin. Robin is free on the Steam platform. One of the things I love about video games on the Steam platform is that they are often more than just a game. They make a statement, and can even teach players what it’s like to live in circumstances they have never experienced before. In the case of Robin, players learn what it’s like to live with chronic fatigue syndrome.

Last week, I shared how cancer-related fatigue affects patients who are undergoing treatment for cancer, or who have had treatment in the past. Some cancers, themselves cause fatigue due to the burden they place on the patient’s physiological systems. This week I am going to share a game which allows players to get a taste of how that fatigue affects patients. While the game focuses on what it’s like to live with chronic fatigue syndrome, cancer patients (and all patients with chronic illness that contribute to debilitating fatigue) can relate to the experience the game, Robin, illustrates.

Robin’s sales page describes the game like this:

“Robin is a free short slice of life vignette that was made to give some visibility to an invisible illness – Chronic Fatigue Syndrome (or myalgic encephalopathy). Live out three days in the life of Robin, a CFS sufferer, and try to manage your time as best you can. What you decide to do in these days is up to you, but know that there is never such a thing as a perfect ending. Built around the concept of spoon theory, Robin is a quick, relatable insight into the struggles of living with CFS/ME.”

I could completely understand Robin’s life. I was diagnosed with rheumatoid arthritis and fibromyalgia in 2009. Three years later, my husband was diagnosed with stage IV lung cancer. Every day we have to make the kinds of choices Robin makes in this game. We have the same internal dialogue when we go to bed each night.

Two things really resonated with me

The pile of laundry on the floor. It never seems to disappear. Isn’t that the way it is with laundry? If it’s not dirty laundry, it’s a pile of clean laundry that’s waiting to be folded and put away.

Deciding whether or not to go to the movies. Fun things are just as tiring as not-fun things. Yet it’s important not to neglect your relationships.

Robin : The Game

It’s often difficult for people to understand energy management, yet many of the people you encounter each day decide how to allocate their time and energy and always end up coming up short at the end of the day.

When you are living with cancer

Depending on where you are at in your disease process, and your treatment, energy management could be as stringent as only doing one thing each day (or even none). There is often a feeling of embarrassment in this, especially when you see so many active people filling each day to the brim with work and play. They seem so efficient, so productive. And, you’re happy for them, but you might also feel a little jealous and a little ashamed.

In only a few minutes, Robin puts that feeling into words and moving pictures. It’s totally free to download Steam, as well as the game, Robin. I highly recommend playing it and sharing it, to raise awareness of chronic fatigue syndrome and energy management issues that affect a host of diseases, including cancer.

Have you ever played a game which helped you to become more empathetic toward others? Please share your thoughts in the comment section below.

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

 

 


Caregiver Guilt

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 G for Guilt Caregivers Feel.

Are you blaming yourself for things which are beyond your control? Most family caregivers feel some degree of guilt, regardless of how good a job they are doing caring for the responsibilities and relationships in their lives.

Caregivers often burden themselves with guilt.

Caregiver guilt is not only fruitless but caustic. Don’t beat yourself up for making mistakes that are human, making decisions that are unavoidable, and having faults that are imagined.
At a time when you need to be even stronger than you think you can be, you don’t need anyone knocking you down—including yourself!

Doing or saying the “wrong” thing.

I remember in the beginning, trying to balance hope and faith with what the doctors were saying about my husband’s prognosis. I was afraid of everything: What if Dan didn’t take what the doctors were saying seriously, and didn’t follow his treatment plan? Some people insinuated that trusting the doctors meant I didn’t have faith for him to be healed by God. Was my fear standing in the way of his healing?

Dysfunctional Relationships

Many of us deal, not only the potential loss of our loved ones but also with guilt because our relationship with them wasn’t what we wish it could have been. This intensifies our grief and our guilt.
Some rules of thumb about guilt: You can’t ignore this pesky emotion or will it away. Guilt simply is. There’s nothing inherently bad or wrong about feeling it.

There is good guilt and bad guilt.

Good guilt will prompt you to examine your behavior and make any needed changes. If you feel guilty, for example, because you were impatient with the patient you are caring for. The guilt is a reminder to try a little harder next time.

Unfortunately what eats most of us alive is bad guilt. There’s nothing constructive about bad guilt. Bad guilt pops up during circumstances that you can’t do anything about (your parent has to move into a hospice facility, for example). It can even show up when something happens that’s good for you, like hiring a home care nurse.

Caregiver guiltOughta-shoulda-coulda-woulda

For caregivers, this can sound like: “I just can’t put Dad in a nursing home. I should be able to care for him myself like Mom would’ve wanted.” Or, “Why didn’t I push him to go to the doctor sooner? Maybe we could’ve done something more if I had.” This kind of thinking is really common. It’s also not helpful. You can’t go back in time and change things. Even if you could, you might not be able to change any of this. The best thing you can do now is to live in the moment. What can you do, right now? That’s where your focus should be. Things (and feelings) are what they are; stewing in them wastes precious energy.

Don’t discount yourself

Selfless people often feel the most guilt because they work so hard for the benefit of others, even at a cost to themselves. When they finally get around to caring for their own needs, it feels like they’re doing something wrong. If you’ve ever experienced this, take it as a sign that you need to follow increase the amount of care you give yourself. Talk about these feelings of guilt with a friend you know you can trust to support you. Often, recognizing guilt for what it is, helps to drive the boogie man away.

Guilty feelings

You may discover some underlying feelings that have been lurking beneath the guilt. You may experience resentment toward the person you’re looking after. This is common and often is part of the grieving process. You are grieving the loss of things as they once were, and as you hoped they would be. This can result in feelings of anger and resentment. Even though you know that none of this is the fault of your loved one, you may struggle with these feelings. It’s a good idea to see a therapist who can help you work through these feelings, without making you feel more guilty than you already do, for having them. Putting these feelings into words may give you a new perspective.

Be gentle with yourself:

  • There’s no one way a caregiver should feel. Give yourself permission to have your feelings. Your feelings don’t control your actions (not if you don’t let them). Eventually, your guilt will subside.
  • Look for the cause of the guilt: Do you have an unmet need? Do you need to change your actions so that they align with your values?
  • Take action: Meet your needs. Needs are not bad or good; they just are. If you need some time alone, find someone to be with your loved one.

We will talk more about the biggest cause of caregiver guilt in the post, Ideal You vs. Real You.

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 2018-04-07 07:00:44.


Funeral Home

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 F for Funeral Home – First Visit.

Even though My husband was diagnosed with terminal cancer in October 2012, we didn’t visit a funeral home until 2018. We knew that we needed to at least get some information. We also needed to make some decisions. Dan hadn’t even decided on cremation vs. burial. I think there’s something about planning a funeral that you want to put off as long as possible. It’s such a mental block to hurdle.

My first look at the Funeral Biz

Before we ever went to the funeral home, I read a book called, Does This Mean You’ll See Me Naked?: Field Notes from a Funeral Director by Robert Webster. Despite its funny title, this wonderful book by a lifelong funeral director handled the subject matter with sensitivity and care. He has encountered some humorous situations during his career. He was able to interject into the book. Along with his experiences, he also shared his opinions and advice concerning working with a funeral home. He had some very strong opinions at times. I appreciated his candor and his wealth of experience.

One of Robert Webster’s opinions was that a small, family-owned funeral home is a far better choice than the large chains that have been swallowing them up over the years. These chains often promote the image of a family-run funeral home, but they are in fact, a massive operation that doesn’t deliver the same personal service you need at such an important time. Knowing this, we still went to the big guys first.

The Funeral Home Seminar

I read about these in the book. The large-chain funeral home invites you and about 20 other prospective customers. They sell preplanned funeral packages over a boxed lunch. We got the postcard in the mail, and the timing seemed right. We ate our sandwiches and chips surrounded by demo caskets and urns in a strip mall storefront. I had checked into the reviews on this chain. It seemed that no matter which actual funeral home location the reviewer used, no one had a lot of good to say about this chain. Still, we were willing to hear them out.

Pre-planning

They espoused the values of pre-planning a funeral. They were right. It makes life a whole lot easier on the loved ones you leave behind if you make your funeral plans in advance (and make payment arrangements). Much like a healthcare directive, having everything planned out ensures that others know your wishes. It also gives you a starting place for a conversation about your plans.

The seminar explained some of the ins and outs of making your funeral plans. They talked about funeral insurance as well as payment plans. One important thing to know is that if you pay one funeral home for services and later change your mind about who you want to hire, they need to give your plans and the payments you’ve made to the funeral home you ultimately decide to use. Never let a funeral home hold you hostage.

funeral Home

The Appointment

Later, we visited with the lady who sells these pre-planned funeral packages. We wanted to get an idea of options and prices. This was very difficult for me. I didn’t want to discuss anything related to Dan’s future death. I would have far rather have been planning my own home-going party. Still, this was important.

The Money

We hadn’t set aside anything for Dan’s funeral. Our budget is pretty tight. She suggested buying funeral insurance, but that didn’t make sense for us since Dan was unlikely to survive the minimum length of time for the insurance to pay out. We would be better off getting a private loan and paying it off later. It’s interesting to note, funeral homes want the money upfront for their services. Too many people have put Uncle Leo in the ground on credit and decided to default. What recourse does the funeral home have? They aren’t going to dig him up. If you are counting on a life insurance policy to cover the funeral, keep in mind that it won’t pay out immediately. They need a death certificate (which can take a month or two) and time to cut the check.

The Price List

It’s a good idea to visit a few funeral homes. Get price lists from each of them to compare the cost of services and products. They will vary from one funeral home to the next. One might give a much better deal on the caskets than the rest. Another might have less expensive funeral services.

Reputation

Really look into a funeral home’s reputation. After reading reviews I decided there was no way we would use the funeral home we visited. One even said that when they arrived to pick up her husband, they asked if there was someone who could help get him into the hearse. That is extremely unprofessional and not something you want to have happen when your loved one dies.

When someone you love has cancer, making arrangements for a funeral is something you need to do. Consider your options before you feel backed into a corner or pressured by raw emotions of grief and constraints of time. You will make more level-headed, better-informed decisions in advance.

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 appreciaton, 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

Originally posted 2018-04-06 07:00:09.


Exercise lowers stress

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 E is for Exercise Lowers Stress.

You may not be able to change the things in your life that are causing you so much stress, but you can do things to improve your ability to handle it. There are several ways that exercise lowers stress. Don’t worry. I’m not advocating that you beat yourself up at the gym every day, but regular exercise lowers stress and can become an enjoyable part of your life.

Training gives us an outlet for suppressed energies created by stress and thus tones the spirit just as exercise conditions the body.
—Arnold Schwarzenegger

Physical Ways Exercise lowers stress

For starters, it improves sleep. A good night’s sleep is an important part of combating high-stress levels. Studies have shown that the less a person sleeps each night, the more stressed they feel. This becomes a cycle because people who are under a lot of stress have a harder time getting a good night’s sleep. This is where exercise comes into the picture. “People sleep significantly better and feel more alert during the day if they get at least 150 minutes of exercise a week.(1)” So, by exercising, you can improve the quality of your sleep. This, in turn, will lower your stress and improve your ability to cope with the stressful things that come up day to day.

Progressive muscle relaxation

Exercise reduces adrenaline and cortisol, the body’s stress hormones. It also stimulates the production of endorphins. These are chemicals in the brain that improve your mood and act as the body’s natural painkillers. They are also responsible for what is known as “runner’s high.” This is why you can feel good after a tough workout.

It keeps you healthy

Regular aerobic exercise lowers blood pressure and helps fight obesity. Having better overall health mean less time in the doctor’s office. You will have an improved immune system. The healthier you feel, the greater your ability to deal with stressful things that happen.

Exercise increases your endurance so you can keep up with the pace of caregiving. You will have more energy to get the things done that you need to every day. As your to-do list shrinks, you will have less hanging over your head. You’ll feel less stressed.

There are mental ways exercise lowers stress

With regular physical activity, over time, you become stronger and more disciplined. Toned muscles and improved confidence can even result in better posture. All of this contributes to a better self-image.

Exercise also gives you an opportunity to get away from the stress of caregiving for an hour. Exercising using large muscle groups in a rhythmic fashion, such as walking or rowing, is also known as muscular meditation. You can get lost in the tranquility of it, renewing your mind. It is a wonderful time to pray and think creatively. More problems would be solved if people took more walks.

Finding the time and energy to exercise

As a caregiver, your time is valuable. It may seem difficult to integrate exercise into your lifestyle. There are some things that you can do to add extra activity to your current schedule.

  • Exercise reduced stressInstead of looking for the parking spot nearest to the door, park further away giving you an extra amount of steps each day.
  • Take the stairs whenever possible. Even in your own home. You can go up and down your stairs to your favorite song. Do this a couple times each day to add an aerobic boost to your routine.
  • If the weather is nice, take a walk in your neighborhood a couple of times a day. You not only get physical activity, but the fresh air will lift your mood as well.
  • If you want more of a challenge but time and convenience are issues, try a DVD. There are many types of exercise routines you can try, walking, Qi Gong, kickboxing, stretches, aerobics, and more. You can even find these on streaming sites.
  • If you are moving from a sedentary lifestyle to an active one, you may want to start out slow. You can move to more challenging activities by either increasing the length of time you exercise or by looking for activities that use different muscles. You might alternate aerobic exercises with strength building ones.

However you integrate exercise into your lifestyle, you will find that exercise lowers stress in many ways. You’ll be glad you did it.

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

Footnotes:

(1) The Sleep Foundation,Study: Physical Activity Impacts Overall Quality of Sleep; https://sleepfoundation.org/sleep-news/study-physical-activity-impacts-overall-quality-sleep]

Originally posted 2018-04-05 07:00:15.


Depression

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 D for Depression in Caregivers.

When my husband was first diagnosed with cancer, all of my attention and energy was focused on finding out as much as we could about his disease and the potential treatments. With each new treatment, we adjusted to different side effects. We tried to help our daughters through the roller coaster of emotions they were experiencing. We dealt with the reactions of our family and friends. All of this kept me so busy that I didn’t have time to think about how I was doing. Then one day, caregiver depression set in.

Different Kinds of Depression

I’d felt the weight of depression a couple of times prior to that. Once was what they call “situational depression.” I was going through a massive life change which included financial insecurity and not knowing what the future held, or even where I would live. I also experienced postpartum depression after the birth of my second daughter,  She had some undiagnosed health problems which caused her to cry non-stop unless she was nursing. This lasted for more than a year. During that time I got very little sleep and became exhausted. Finally, when she was 2, she had a surgery which changed everything.

Recognizing the Problem

So, when I began to experience symptoms of depression, several months into my husband’s cancer battle, I recognized them immediately. It felt like a combination of situational depression (after all my husband did have cancer), and exhaustion and hopelessness, much like I felt during my daughter’s first couple years of life. This was made worse by the serious, life-threatening illness of another family member. The pressure I felt was unbearable. Many days I was afraid to get out of bed, for fear of what would happen that day.

Seeking help

I felt a desperation along with the depression. I tried to seek help from our cancer center. I wanted to talk to someone specifically about the stress related to my husband’s cancer. In my situation, I didn’t need medication, but I did need some serious support. I needed to talk to someone outside of the situation. At the time, the cancer center didn’t have anyone who worked with caregivers. They gave me the phone numbers of some recommended therapists, but none of them were accepting new patients.

depression

A Therapist in Clinic

After a few weeks of limping through, I made an appointment with a therapist at a nearby in-network clinic. There was a 3-week wait for the soonest opening. By the time the day of the appointment arrived, I’d already applied some emotional band-aids and no longer felt the level of stress I had felt when I made the appointment. I tried to see the therapist monthly, but we just didn’t “click.”

So, What Helped?

To be honest, my husband’s health improving, and our family member’s health stabilizing, were the 2 things that helped the most. The pressure was alleviated. That’s not very encouraging news. What is encouraging is that I learned some things since then to help prevent full-blown depression in the future.

Other Caregivers

I found a group of cancer caregivers called Jack’s Caregiver Coalition that meets monthly to talk about what’s happening in their lives. Because it’s just for caregivers, we can be completely open and honest. We can talk about the thing that’s most pressing on our minds, or we can just listen. There’s something encouraging about knowing there are people out there that get what you’re going through. Even better, you can encourage someone else.

Support

I have a couple of people in my life who I can get together with to talk and to pray with. These are people who go the extra mile and want to be there to help if I start to sink under the pressure of it all. It’s important to think about who you can count on during this time to support your needs. Often people are there for the patient but don’t realize the extent of what caregivers go through. Finding a few friends who are there for you is important.

Balancing Your Schedule

I have things on my schedule that get me out of the house when I need a break. I’ve also learned that sometimes you need to drop all obligations, even if they are things you enjoy doing. Finding the balance between the two is important. Sometimes it may take a bit of trial and error. You are the only person who knows where you need to be on the scale. I tend to become easily overwhelmed under pressure. So, I do better when I don’t have actual obligations and yet have the ability to take a break and go out for coffee when the opportunity arises. When my husband is sick, I don’t feel comfortable leaving him. Some people need to get out to just breathe a while. We are all wired differently. This is when you need to advocate for yourself.

Find professional help BEFORE you need it

Waiting until you feel desperate isn’t a good idea. You may need to try a few therapists before you find one you feel comfortable with. Shop around. Let the therapist know what you are dealing with. Find out how hard it is to get a last minute appointment if something comes up and you need to talk to someone right away. If they don’t seem like a good fit, ask for a recommendation. They are professional and won’t take it personally. They may know of someone who is just right for you.

Clinical depression

If you are dealing with clinical depression that won’t get better with time and talk, you may need medication. In the past, stigma was attached to mental illness and its treatment. Mental illness isn’t a moral issue. It’s a health issue. Just like people with diabetes need medication, people suffering from depression or any other mental illness shouldn’t feel ashamed of seeking the treatment they so urgently need.

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 2018-04-04 07:00:04.


Critical Family Members

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 C for Critical Family Members.

I am fortunate to have a close family who is very supportive, but critical family members are a common source of stress for caregivers.

Critical Family Members

As a caregiver, you are likely stressed and at times feel underappreciated and unsupported. You may also be dealing with caregiver guilt. Having critical, family members can be especially difficult. What can you do when someone disrespects, discounts or just plain aggravates you?

Don’t respond immediately

Your gut reaction will likely only add fuel to the fire. Instead, consider what was said. Was there any truth to it? Often the most hurtful things have an ounce of truth in them. Check your pride at the door.

Then, consider the source. It’s often nothing personal. They might be insecure, so they criticize others as a way of feeling better about themselves. Does these critical family members have a reputation as someone who loves a quarrel? Do they start an argument with everyone? Then that’s just his or her way. So, even though it’s irritating, don’t take it to heart. Think about the fact that they are probably pretty lonely since people avoid them. That will help you see them in a more sympathetic light.

The Direct Approach

Rather than waiting for things to get even more uncomfortable, talk to critical family members about their concerns. This is best done privately so that they don’t get defensive and/or put a false face on things. It’s important to approach this from a place of empathy, rather than confrontation. Make it your goal to find out what their concern is. Think about what they must be going through in this cancer journey, as well. Hopefully, you will be able to share your feelings with them, too. Who knows, you may just walk away from the table as friends.

Listen with EmpathyCritical Family Members

This is especially important to do if the criticism is delivered in a respectful way. No one is perfect, including you. Maybe you can learn something by hearing your family members out. Perhaps you will gain new insight into what they are going through. This will require empathy. Consider the fact that most criticism is born out of fear. What does this family member fear? Even if your mother-in-law is difficult to deal with, in general, her son’s cancer diagnosis might make her act more critical or hostile. She might be afraid of losing her son and of being pushed out of the remaining time he has left as well as the decision-making process. There may not even be any basis for these feelings, but they are still very real to her. By becoming more understanding of these things, you may not change the behavior of the family member, but you can reduce the negative impact it has on you. You can begin to be more sensitive to the things family members are feeling at this time.

What if they don’t sound respectful?

Then, it’s important to hear the words that they are saying? We often become very sensitive to the way people say things. Sometimes we come to expect that someone is critical of us when they aren’t. Try giving someone the benefit of the doubt by listening to the words they say rather than for any underlying tone. “Tone” is highly subjective and easily misinterpreted. The next time you think your cousin is being sarcastic when she says, “I love your new curtains,” say, “Thank you,” with a smile and leave it at that. This becomes even more important when it comes to matters of caregiving. You may need to politely respond while trying your best not to let things escalate. Let comments made by critical family members run off of you without sticking like water off a duck’s back. Life is too short to stew in the stuff others toss at you. It’s not worth it. Still, there is no denying that words can really hurt.

Walk away

When all else fails, avoid critical family members. This is especially easy to pull off when you are at a large gathering, but not so easy when they start calling, or worse—start calling everyone else to try to turn them against you. If you haven’t already, this is the point at which it is imperative that the patient speaks their mind. There should be no doubt in family members’ minds as to the patient’s approval of the way you are doing as his or her caregiver. The sooner it is cleared up the better. If the patient becomes too ill to deal with this, you are on your own. That’s not a good position to find yourself in.

Note:

Always make sure the patient has a health care directive and has shared its contents with the rest of the family. Make sure it is notarized and on file with the patient’s health care provider in case the patient is ever unable to communicate their needs and there a conflict over medical decisions. At that point, if you are the proxy, it will be up to you to ensure your loved one’s wishes are honored.

It’s stressful when a loved one has cancer. It’s common for family members to at times disagree with one another. Thankfully, it rarely becomes a serious issue that can’t be worked out by sitting down for a heart to heart.

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 2018-04-03 07:00:12.


Boundaries

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 B is for Boundaries & Caregiving.

Sometimes as a caregiver, you can get so focused on taking care of your loved one that the boundaries between you and the patient can get blurred. Setting boundaries in your caregiving relationship can ease both caregiver burnout as well as the guilt that both the caregiver and patient often feel as a result.

“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Former First Lady, and caregiver advocate, Rosalynn Carter

Blurred boundary lines can manifest themselves in many ways:

You might find it difficult to make decisions.Boundaries

You don’t want to hurt your loved one’s feelings. Maybe you’re even worried about how others will perceive the way you are handling things. You can hear the whispers already, “Can you believe she is still going bowling once a week while her husband is going through cancer?” But, when you are able to set clear boundaries, you don’t worry about the whispers, because you know that you’ve made the right decision for yourself. Your bowling night might be the one thing that keeps you from losing it during the most stressful time of your life.

You feel exhausted when you don’t have clear boundaries.

Whether this is in other relationships such as work and church, or in your relationship with the loved one you are caring for, boundaries help to bring a sense of peace and order to your life. All of the things you agree to do eventually will wear you out. Even if you were able to take on the same schedule before you became a caregiver, it’s much more difficult to maintain when you are also living with the emotional strain cancer puts on patients, their families, and their caregivers.

You’re just trying to be helpful.

Maybe you’re just doing what you’ve always done (before you became a caregiver). Some caregivers find serving others to be therapeutic. It takes their mind off of their worries and gives them something to feel in control of. Even if you fall into this category of people, keep in mind that you can get too much of a good thing. Use caution when agreeing or volunteering to do things, especially if they are things that require a long-term commitment.

It’s common for your role as a caregiver to change over time. It may become more intense and time-consuming, requiring you to cut back on the things you’ve always done in the past. Letting go of those things, especially things you really love doing, is hard. Remind yourself that this isn’t permanent. At some point, you will be able to say “yes,” again to responsibilities you enjoy, outside of your caregiving role.

For now, it’s a good idea to allow yourself an “out.” Say, “I would love to help, but there is the possibility that my caregiving responsibilities will interfere with this at some point. This lets the people in your life know that at some point you may need to pull out of a commitment.

Sometimes this lack of boundaries develops out of habit.

You start saying yes. More “opportunities” arise, and before you know it, your calendar is ready to fall off of the fridge, it’s so heavy with ink.

Some people lack the assertiveness it takes to say, “no.” Have you ever had someone ask you to can do something for them, and because you are afraid of letting them down, you agree, even though you really don’t want to? It can happen to anyone, but if it happens too often, it can contribute to burnout. As a caregiver, you already have a lot of responsibilities.

Blurry boundaries create chaos, which isn’t good for anyone. That chaos can show up in your schedule and in your relationships. You may wonder where your boundaries are (or even if you should have them at all). When you add too much to your list of things to do, you are bound to drop the ball at some point. This can lead to feelings of guilt and anxiety. Even worse, you can end up resenting the people you are serving, including the patient you are caring for.  By setting clear boundaries, everyone knows where they stand and what they can and shouldn’t expect of you. This includes you!

Boundaries

Sometimes patients expect more than what is reasonable and healthy.

Being ill can cause a patient to feel afraid and alone. It’s natural for them to rely on you, heavily to help them through these times. Sometimes this can become unhealthy. They may make you feel guilty for going out with friends or having another commitment that keeps you from doing what they would like you to do for them. The longer you allow this to continue, the more difficult it will be for them to understand that they are being unreasonable.

“You’ve always spent Friday nights with me in the past.

Why do you need to go to your quilting group now?”

As a caregiver, you’re already one demand away from burnout. Trying to live up to the expectations of a patient without boundaries can slide a caregiver over the edge. Even if it’s difficult at first, your loved one will eventually understand and get accustomed to your boundaries.

Do you as a caregiver demand too much from yourself?

With these responsibilities, you might feel like you fall short of your own expectations. This not only contributes to caregiver guilt but patient guilt, as well. Most patients can see when you are neglecting other relationships and responsibilities in favor of caring for them. They’re also aware of how tired you are and the effects it is having on your overall health.

Boundaries are an expression of respect.

Boundaries help you and the person you are caring for determine what your role and responsibilities are. Sometimes caregivers are the ones crossing the boundaries of their loved one. They might hover, “mothering” their loved one. It’s easy to see why this happens, especially when a patient is lax in their self-care. Unfortunately, this can leave a patient feeling more like a child than an adult, capable of making decisions for themselves. Worse yet, they may feel disrespected. Often the patient was once the provider and a source of strength in the family. Now, they’re in the most vulnerable position they have ever been in. They have lost control over so many things in their lives. A caregiver who unintentionally crosses a patient’s boundaries only exacerbates this feeling.

Many patients say they feel like a burden to their loved ones.

By allowing yourself to do other things you enjoy, apart from your normal caregiving routine, you not only refresh yourself but reassure the patient that your life isn’t consumed by taking care of them. You can also reassure them directly when you encourage family members to talk about feelings. Be committed to honesty when you talk together. This shows your loved one respect. It says, “I trust that you can handle the truth. You deserve the truth.” Setting boundaries benefit both patients and caregivers.

Boundaries and Respite Time

These boundaries should include setting aside time for yourself to refresh and nurture the other relationships in your life. Sometimes this can cause some anxiety on the part of both the patient and the caregiver, especially if the level of caregiving is intense. They may worry about how they will get along when you aren’t there. If their concern is merited, have a friend or family member come to spend some time with them so they can feel safe while you have some time to yourself to relax.

When a Patient’s Cancer is Terminal

Boundaries can be especially difficult to establish and maintain if the patient has a terminal illness. The caregiver may think, “What if Mom dies tonight while I’m on a date with my girlfriend?” Kelly Grosklags, who specializes in oncology-related counseling says about this, “people die when they are ready. Don’t feel guilty if you do happen to miss the death, itself. You have to make decisions, in the moment, with the information you have at the time. You have to say no in order to say yes.”

“Love many things, for therein lies the true strength, and whosoever loves much performs much and can accomplish much, and what is done in love is done well.” –Vincent Van Gough

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 2018-04-02 07:00:45.


Anger and Grief

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 A is for Anger & the Grief Process.

When someone you love has cancer…

You grieve. Anger is very often one of the early manifestations of that grief.You may think of grief with the death of a loved one, but grief is a response to loss. This could be the loss of your health, your job, a relationship, or a lifelong dream.

For patients, caregivers and family members, grieving begins the moment you realize that you or a loved one has cancer. There is a big shift in the story you pictured for yourself. The outcome may not look anything like you had hoped or imagined. Even if your cancer isn’t terminal, there is a lot to grieve when you or someone you love has cancer. It often brings a laundry list of losses with it.

Common losses:

  • Time: Sometimes a caregiver has to devote all of their time to caring for the patient.
  • Anticipated Grief: As you are caring for your loved one, you’re acutely aware that you may lose them.
  • Activities: A health crisis can mean no longer living as you once did. This is true for caregivers as much as for patients.
  • Lost Dreams: After a cancer diagnosis, life no longer looks like the one you had planned. It will never be the same again.
  • That, in itself, is a tremendous loss.
  • Finances: Often the patient and/or the caregiver have to stop working. This loss of income means fewer opportunities and
  • more financial stress.
  • Stability: Each family member is experiencing grief in their own way. While the patient is usually shielded from this, caregivers frequently have to help everyone manage this experience.

What’s behind the Anger?

Anger is one of the most common reactions to intense stress, such as the kind experienced in the face of a serious illness. It helps to consider what is behind this emotions and how to express it in a healthier way.
Feeling angry is a normal reaction to cancer. It feels unfair. People get angry when something is unfair. You may even be angry with the person who is sick. This can lead to feelings of guilt. Often, anger is covering up deep-seated sadness. Talk with someone about the things you feel cancer has taken from you and your family. Sharing these things with someone else can be an act of empowerment.

Grief and AngerIt’s Okay to Feel Angry

It is a valid response during the grieving process. Feeling anger doesn’t make you a bad daughter, husband, sister, etc. or that you’re not coping well. It makes you human. Unfortunately, the expression of anger can often be destructive with shouting, cruel words, or even physical violence. Most people lose any feeling of security and safety when someone is showing out-of-control anger.

Express your feelings rather than act them out.

Yet, it’s important to fight the instinct to stifle your feelings. They need to be recognized. Not only is hiding your feelings exhausting, but it also sends a signal to your family members that they should do the same thing. That’s why it is important to express these feelings in a constructive, healthy way. It’s important that you don’t take these feelings out on the people around you. They are hurting too.

How to release your anger

Find healthy ways to release the anger. This could be something physical, like walking or some other sport. It could be something symbolic, like writing down the things about cancer that make you angry and then burning the list (in a safe, controlled way). Immerse yourself in a hobby. Pray.

You can be angry without falling apart.

These feelings won’t last long. There are many other emotions you will experience as you grieve. They are all ways of fine-tuning your feelings. Be gentle with yourself and your loved ones and you will get through this a stronger person in the end.

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 2018-04-01 07:00:33.


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

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