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Recently by Phyddy Tacchi

Phyddy_Nov.jpgLast week we talked about the importance of learning to take care of yourself in the midst of your expanded caregiver role.

I asked you to take care of your body, with exercise and good food, feed your mind by controlling stress and negative thinking, and feed your soul through mediation and prayer.

Below are the next three steps you can take, starting today, that will make a difference for you.


4. Self-Care: Preserving Your Energy


"My whole life has changed. I have no time for myself."

When possible, learn to unplug yourself from your patient and replug into something that will energize you and bring a greater sense of peace and pleasure. It's important to get away from cancer to recharge your battery so that you can come back refreshed and fortified to tend to your patient. Sometimes, just carving out 10 minutes for yourself can help rejuvenate and restore.

You have a very hard job. You likely are doing everything you reasonably can to take care of your loved one. Begin to learn to run on "premium caregiver fuel" by feeding your mind, your body and your soul with thoughts and activities that build, nurture, comfort and strengthen. This will conserve your energy over the long run.

Be good to yourself. You have the right and the responsibility to take care of yourself. This is not selfish, it's self-care. Taking short breaks now will give you the energy and strength to stay in this for the long haul.

This is exceedingly important, but difficult for caregivers to give themselves permission to do. Many caregivers may feel guilty when they leave the patient's bedside, when medically appropriate, to go do something pleasurable for themselves. However, research studies show that caregiver self-care is medically necessary for you to stay mentally and physically healthy and strong.

5. Self-Care: Evaluating Your Priorities

"I started to become realistic. I didn't cause this cancer.
I can't cure it or control it."


Becoming realistic can be a mind-altering experience. Starting from there, consider letting go of the idea that you are Superman or Superwoman.

•     Practice being clear in your mind about what your job really is. Are you over-functioning for your patient? Are you doing things that your loved one is capable of doing for himself/herself? This is not unusual, especially in the beginning. Be clear in your own mind what's really happening right now, not what "might" happen. Set reasonable limits with your loved one. Determine what self-care tasks he/she can do. A gentle reminder may be: Don't do for your patient what he/she is capable of doing for himself/herself.

•     Take stock of the things that are really important that "must" be done, not what "should" be done. As one caregiver said: "I made a list of the things that I absolutely had to do, like organize medications, schedule appointments, etc. I made another list of things that I was doing that just didn't really matter in the big picture. I just let those things slide off my back."

•     If possible, delegate some responsibilities. Recruit others to help you.

•     Learn some practical problem-solving techniques, such as how to manage medication side effects, organize a medication sheet, and develop strategies for symptom control of pain, nausea or fatigue.

6. Self-Care: Finding Your Strengths

"I've been able to do things that I never in a million years thought I could do."

    •     Identify your strengths. Some caregivers have a hard time doing this. Your personality is unique and you bring talents and gifts to this demanding role of caregiving. What is it that you bring to the table that strengthens this situation that no one else can, or is willing, to do? What have you learned through this experience?    

Other caregivers have identified their strengths and you can, too. Focus on what you're good at doing.

If you're a caregiver, in the midst of your expanded role carrying intense emotions and challenges, it's vital that you learn to take care of yourself.


Many caregivers feel guilty taking time to do something for themselves while their loved one is ill. You may need to first give yourself permission to do so. In light of the approaching holidays, this may become even more important.

What can you do, starting today, that will make a difference for you? You have lived all your life to come to this day, to this moment. There may be different ways to travel this road that will help you maintain your physical and mental health over the long run.

Here are three steps to start with. We will cover three additional steps next week.


1. Self-Care: Feeding Your Body

"My body is literally my caregiving machine. I have to take
care of it."


•     Exercise -- pump up your body by walking at least 10 minutes a day.
•     Sleep -- rest your body for 6-8 hours a night.
•     Eat right -- feed your body, nutritionally and regularly, including breakfast. Eat lots of vegetables, fruit and whole grains.
•     Drink plenty of water.


2. Self-Care: Feeding Your Mind

"I was scared all the time until I learned that the definition of fear is "Future Events Appearing Real." As long as I focus on the present, I keep from getting scared."

In part, our energy and mood are direct products of what we think about. During this time of stress, it's vital to control your thoughts to focus on today. Otherwise, thoughts may spin out of control with worry about what tomorrow might bring, creating a sense of chaos, fear, anxiety and uncertainty. Our thoughts are like tools; they can be used for building up our confidence or tearing it down. Only you, not circumstances or other people, can control what you think about.

Some caregivers find writing in a journal a good way to sort thoughts and feelings. It can serve as a soothing process to empty the mind of stress. Support groups also are useful as they provide a safe place to sort things out and to balance one's perception of reality. Others use reading, music or meditation for thought control.


3. Self-Care: Feeding Your Soul


"Where is God in all of this?"

Living a life with cancer at the forefront carries three dimensions: physical, emotional and spiritual. Searching for spiritual sustenance is one of the exercises that many caregivers experience in their quest to make sense of this time in their lives. As their spiritual life begins to broaden in searching for meaning and deeper understanding, many find that their priorities become rearranged. What was thought to be important before cancer -- such as striving for material goods or worldly success -- may now seem trivial and unimportant. What may emerge is the growing awareness and appreciation of the importance of faith and relationships with loved ones.

Pray and meditate -- feed your soul. Seek spiritual sustenance. Learn from one caregiver who prays, this prayer.

"Even though my loved one has this cancer, help me to learn to live, really live, this day


Basic Steps for Caregiver Self Care Part 2


tacchi0909.jpgToday, let's discuss the fluctuating emotional aspects of caregiving. Below are a few examples of typical things that I hear from caregivers.

"My loved one is so irritable with me and I'm working as hard as I can to help. All I want to do is go home."

"I don't have time to take care of myself. Even if I did, I don't know where to go or what to do."

"I just want things to return to normal, to the way things used to be."

"Sometimes, I just have to get away."

Sound familiar? Sometimes caregivers feel as if their mood changes in relationship to managing the fluctuating nature of day-to-day medical circumstances.

"Help! I'm on an emotional roller coaster and I can't get off."

"Sometimes at night, I just lay there waiting for the next earthquake."

"If I don't sleep at night, I end up crying the next day."

Caregivers often work overtime to provide care to their loved ones. This has its pitfalls and blessings. It's often a job requiring 24/7 attention with many physical and emotional demands, filled with highs and lows. The most common complaints of caregivers are emotional and physical fatigue, exhaustion and sleep deprivation. The time and effort it takes to care for your loved one each day can, over time, become very stressful with a gradual wearing down of energy.

There's a high correlation between fatigue and depression in caregivers. When you're under such tremendous chronic stress, you can experience many emotional ups and downs on any given day. One minute you feel as if you have it all together and the next minute it seems like you're falling apart. Not only is physical fatigue a factor, but emotional overload is as well.

The Volcanic Feelings of Caregivers: Emotions to the Max

"My feelings bounce around all over the place. Sometimes they are positive and sometimes they are so painful I don't think I can stand it."

Sometimes you may feel like a virtual volcano when pressure builds without relief. Today may seem too difficult and tomorrow too uncertain. Where are you today on this spectrum of feelings?

Calm............................................................Scared
Happy..........................................................Sad
Relieved.......................................................Nervous
Contented.....................................................Angry
Confident......................................................Worried


The "Forbidden" Feelings of Caregivers

"Sometimes, I can't talk to anyone about how I feel. I don't want to burden them or take away the hope of my loved one. No one understands what this is really like unless they've been through it."

It's not unusual for caregivers to have intense feelings that they're hesitant to talk about, especially to their patient as caregivers may wish to protect their loved one from hearing about their distress. These feelings can be strong and seemingly in conflict with what you're trying to do. Although others may tell you to "think positive or be optimistic," there are times when this just doesn't seem possible.

Which of these "forbidden" feelings can you identify with?

•    Yearning for "normal"
•    Doubt
•    Resentment
•    Anger
•    Guilt, feeling trapped
•    Fear
•    Hopelessness
•    Helplessness
•    Worry
•    Sorrow
•    Grief
•    Loneliness


Phyddy_reading.jpg"I work all the time, but still feel like I'm behind."

One of the chief concerns of caregivers is fatigue, both physical and emotional. Many caregivers complain of sleep deprivation. Because of the all-encompassing duties that caregivers must absorb, fatigue and self-doubt may set in. The more tired caregivers begin to feel, the more they may question their ability and self-confidence.

If this fluctuating sense of physical and emotional fatigue has happened with you, don't lose heart. This has been the experience of many caregivers. It's important to take care of yourself during these difficult times, even for small blocks of time.  


Which of the following thoughts of self-doubt can you most identify with?

• Why can't I keep up?
• Why can't I do everything that needs to be done?
• Why can't I get him/her to eat? To drink? To walk?
• Is there something wrong with me because I can't get him/her better?
• Why doesn't he/she talk with me?
• Why can't I control things?
• I'm working as hard as I can and he/she still feels bad.
• I don't have time for anything.
• I feel defeated and burned out.
• My loved one is so irritable with me, I just don't know how to handle it.
• My loved one doesn't want anyone else to care for him/her other than me. I'm getting worn out.
• My loved one won't follow my advice.
• I let picky things get to me.

In my next post, I'll discuss the emotions of caregiving.

If you're visiting M. D. Anderson and you have time, I invite you to join me for our weekly "Caregivers, I've Got Feelings, Too!" support group. It's held on Thursdays, noon-1 p.m., at Place ... of wellness, Main Building. Call 713-794-4700 to reserve a spot. Oh, and we serve lunch.

"I feel responsible for absolutely everything. I always think I should be leading the patient to do the right thing. I feel I'm becoming such a nag."

Life can change with just one phone call. When the words "your loved one has cancer" are heard, life changes forever for the caregiver. That moment of first hearing the news will likely live on in your memory. Suddenly, life as you knew it is gone. A whole new expansive set of responsibilities appears seemingly overnight and invades every facet of daily life, as you can see from the list below.

What new responsibilities do you now have?

Practical Responsibilities
__Handling finances, working with insurance company, handling legal matters
__Providing for child care, meals
__Taking care of the home, often from a distance, such as paying bills, cleaning, yard, mail, etc.
__Time management

Physical
__Patient symptom management
__Fatigue
__Dealing with your own health concerns

Social
__Managing family relationships
__Managing other relationships, including friends, church, etc.
__Continuing with school and work tasks

Spiritual
__Coming to an understanding of the meaning of your life and death issues
__Tolerating suffering while yearning for control
__Maintaining hope in the face of uncertainty

Emotional
__Becoming aware of and managing anxiety, depression, sleeplessness and loneliness
__Learning new communication skills, including with the treatment team and your patient, who may be irritable
__Learning a different skill set of listening and coping skills

Administrative
__Becoming organized as the record keeper, including research on disease facts
__Tracking and organizing medications
__Scheduling for tests and treatments
__Working with the medical staff, other services, and coordinating appointments and schedules
__Seeking and finding help from others
__Providing transportation to and from appointments, errands, etc.
__Receiving medical training for at-home procedures

Self-concept
__Keeping up a feeling of confidence
__Maintaining a sense of self-worth during a time of great demands and stress
__Establishing and maintaining an overall feeling of competence

How many did you check? Are there additional things that you do that aren't on this list? Given that there are only 24 hours in a day, this scope of things to do can feel overwhelming and at times, exhausting. How do you handle this level of stress?

As I'll continue to mention in future caregiver posts, it's vital that you keep a toe in the water of the so-called normal, healthy world. It's so important to take care of yourself, but we'll discuss that at another time.

Caring for the caregiver

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Are you caring for a loved one with cancer? Feeling overwhelmed? You're not alone.

When I was a cancer caregiver, it would have been so helpful to have resources to help me and my family through a very difficult time in life. I'm hoping that this blog may now provide you with information and support as you go about your day as a caregiver.

Phyddy_reading.jpgMy series on caregivers will reflect the observations of other caregivers who have been part of a similar journey. It's intended to serve as a practical guide and an emotional survival kit to help you take care of yourself while taking care of someone else.

A caregiver has special needs, which often are quite different from those of a patient. As you probably know, caregiving brings a sudden set of new responsibilities that demand an enormous amount of time and energy. While the caregiving experience may provide opportunities for growth with positive experiences, it also can take an emotional and physical toll, at times leaving you frightened, lonely, burdened and drained.

Many people travel from near and far to receive the world-class treatment that M. D. Anderson offers. While this carries distinct medical advantages, the adjustments that are needed can bring unique challenges. There are many new things to learn, including navigating a large and unfamiliar setting; gaining understanding of medical terminology; building trust with a new staff; managing medications, side effects and schedules; keeping the home fires burning from a distance ... well, the list goes on and on.  

Over the next several months, we'll cover many topics, including thoughts, feelings and actions that caregivers experience. I'll share with you how others have faced these challenges and the methods they used to help them get through this stressful time. I hope the guidance provided here will strengthen, soothe and energize you -- the caregiver -- a pivotal member of the treatment team.

Watch for my next post, which will address the responsibilities and feelings of caregivers. A bit later, we'll talk about identifying your strengths and ways to take care of yourself.

In the meantime, I'd like to hear about your experiences as a caregiver or questions you may have on the topic. Post your comments and I'll do my best to address them.

Caregiver Support at M. D. Anderson




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