Caregiver Burnout

Most caretakers experience burnout at some point. When it occurs and isn’t addressed, they eventually become unable to provide quality care.

According to the 2015 National Alliance for Caregiving and AARP Public Policy Institute, an estimated 43.5 million American adults were unpaid caregivers and about 85 percent cared for someone related to them.

Taking care of a loved one with dementia, physical disabilities, or other age-related conditions makes demands on a person’s time, energy, and emotions — demands that, as the Cleveland Clinic warn, “can easily seem overwhelming."

In some cases, this feeling of being overwhelmed leads to caregiver stress syndrome. Caregiving stress syndrome is caused when caregivers neglect their own physical and emotional health to focus on caring for a loved one.

Numerous factors play a role in creating the stress; factors such as the constant demands of caring for a person and the changing relationship of being a loved one to that of being a caregiver.

Many place unrealistic expectations on themselves, thinking they can do it all and refusing to ask for help - often because they don’t want to burden anyone. Finally, caregivers can simply be beaten down by the emotional toll on them.

Caregiver stress syndrome is associated with numerous negative health outcomes. 40 to 70% of caregivers suffer from depression and many experience anxiety, anger and irritability. It can not only impact one's mood, but his or her long-term health and wellness. Chronic stress can lead to high blood pressure, diabetes, and a compromised immune system.

Symptoms of caregiver stress syndrome include changes in appetite, weight and sleep patterns; feelings of hopelessness, irritability and helplessness; withdrawal from friends and family; sickness; thoughts of self-harm; loss of interest in previously enjoyed activities; and emotional and physical exhaustion.

Feeling powerless is the number one contributor to burnout and depression. It’s an easy trap to fall into when you feel stuck in a role you didn’t want or that you can’t change. The good news is that you really aren’t powerless, though. While you don’t always have the extra time, money, or physical assistance you’d like, you can always focus on finding more happiness and hope. So, how can I do that, you ask?

Here are some ideas:

When faced with a loved one’s illness or the burden of caregiving, there’s often a need to make sense of the situation and ask “why me?” You can spend a large amount of energy dwelling on things you can’t change and for which there are no clear answers or you can focus on what you can do. The emotional traps of feeling sorry for yourself or searching for someone to blame is fruitless and gets you nowhere.

Acknowledge that, despite the resentments or burdens you feel, you are choosing to provide the care. Identify the positive reasons behind your choice; the deep, meaningful motivations that sustain you through difficult times.

Look for the silver lining. Think about ways that caregiving has made you stronger or how it’s brought you closer to the person you’re taking care of and to family members.

Don’t let caregiving take over your life, which can be a challenge in and of itself. Give yourself permission to invest time in things that give you meaning and purpose and make the commitment to take that time for you.

Focus on things you can control. You can’t make more hours in the day or force a relative to help. So, rather than stressing out over things you can’t control, focus on how you choose to react to problems.

Celebrate the small victories. If you feel discouraged, remind yourself that your efforts matter.

Reading about caregiver stress syndrome was an eye opener for me and explained that my feelings, as I provide care for my husband with dementia, are normal.

On one hand, I do feel resentment and I can feel sorry for myself. Caregiving is not something I ever wanted to do. It is taking over my life and I have little time and energy for me and my projects.

On the other hand, this experience has made me stronger, I do know that I am making a difference, and I do know that this is a choice I am making.

Steps to help prevent caregiver burnout include:
• Talk to someone about your feelings and frustrations.
• Set realistic goals. Accept that you may need help with caregiving, and turn to others for help with some tasks.
• Don't forget about yourself because you're too busy caring for someone else. Remember, taking care of yourself is not a luxury. It is an absolute necessity.
• Talk to a professional – a therapist, social worker or clergy member is trained to counsel individuals dealing with a wide range of physical and emotional issues.
• Know your limits and be honest about your situation. Recognize and accept your potential for burnout.
• Educate yourself. The more you know about the illness, the more effective you can be in caring for the person.
• Develop new tools for coping. Lighten up and accentuate the positive. Use humor to help deal with everyday stresses.
• Stay healthy; eat right and get plenty of exercise and sleep.
• Accept your feelings. Anger about your responsibilities or the person for whom you are caring is normal. It doesn’t mean you are a bad person or a bad caregiver.
• Join a caregiver support group. Share your feelings and experiences with others in the same situation can help you manage stress, locate helpful resources, and reduce feelings of frustration and isolation.

Self-compassion or extending compassion to yourself in instances of perceived inadequacy, failure, or general suffering is key. Kristen Neff, researcher and author, identified the following components of self-compassion as being composed of three main components – self-kindness, common humanity, and mindfulness.

But what if you are already experiencing caregiver stress, as I was. What worked for me was admitting I needed help, focusing on what I can provide, setting realistic goals, joining a support group, and self-compassion. It was important to acknowledge my need for time off and equally important to give myself permission to take it.

Yet, there are no easy answers, sometimes my ideas work and sometimes they don't. What ideas have worked for you?

 

Inner Critic or Inner Coach

 

 

Do you ever have conversations with yourself; ones that take place in your head?

As Dr. Jessica Nicolosi, a clinical psychologist based in New York says, “Talking to ourselves is completely within the norm. In fact, we talk to ourselves constantly.”

This inner voice might “talk” throughout the day or be unrecognizable; a critic or a coach. An inner critic is negative and may arise when you’ve made a mistake or are working on something difficult. This critic demands perfection or surrender. You may be very familiar with the voice nagging you into believing that anything other than perfect is not worth trying. It points out previous failures and warns of things that stand in the way of getting what you want.

An inner coach is positive and more likely to arise when you are succeeding. The inner coach supports your efforts, motivates you to keep trying even when you aren’t totally successful, encourages you to work toward improvement, and helps you figure out what might be standing in the way of your performance - like a personal trainer for your attitude!

As a young child, you were like a sponge, absorbing information. Your values and perceptions developed based on how you felt and interpreted experiences with family, religion, society, friends, and the media. From those sources, your inner critic or inner coach was born. In most cases, the critic speaks louder than the coach.

There are several ways to overcome the inner critic; let’s look at two of them: The first way is to ask yourself the following six questions to quiet your inner critic:

1. Do I have an “all-or-nothing” point of view?
2. Am I demanding perfection instead of rewarding progress?
3. Am I exaggerating the challenges or making excuses for why I can’t possibly succeed?
4. Am I hungry, angry, lonely or tired? Is this interfering in my ability to make sound decisions?
5. Is this line of thinking going to help me or discourage me?
6. If I wanted to be more positive, what would I say to myself?

Seven steps for dealing with the inner critic:

First, listen to your inner voice for a week without judging or interacting with it; the longer you can listen the better. You may even want to record what the voice says in a journal.

After listening and observing for a while, you’ll be able to figure out your inner critic’s personality and habitual ways of talking to you.

Then, study your inner critic: now that you have your notes & observations ask yourself, “where did you hear these critic voices before?” “Whose voices are you really hearing?” Was it a well-meaning teacher/relative who reprimanded you in the past?

Perhaps, your parents’ judgment and point of views are coming through; however, now, they show up as self-created negative comments sabotaging your personal well being.

Ask your inner critic: How true is this? For example, if your thought is “I’m a failure,” then ask yourself “how is it that I have financial success and enjoy a balanced family life? By doing a reality check, you empower yourself instead of believing what your inner critic says. A question that can be helpful is “Does it really matter if I am - or not?”

Next, name your inner critic – choose a name that is not attached to anyone close to you and has a non-favorable, gloomy or even a cynical meaning for you. Have fun and use your imagination!

Then, create an imaginary persona for your inner critic. Is it male or female? How does it dress? What does it sound like? How does it smell? Is it old or young? The clearer your picture, the better; by giving a name and an image to your inner critic you equip yourself to effectively manage it.

Talk to your inner-critic. It is highly unlikely that this voice will disappear from your life, but you can quiet it. The inner critic is not used to being challenged, and it really wants to protect you from harm. So, create reasoned, positive arguments to reply to negative comments.

For example, if the critic said “You never do anything right.” Acknowledge the statement, and answer by saying that everything is OK, and you are in control of the situation. Ignoring, talking back to, and telling your inner critic to be quiet for a while can also be temporary ways to deal with it. You can order it to sit out of a conversation, or even wait in the car.

Finally, since the voice is here to stay, how about transforming it from a critic into the coach?

Your Inner Coach won’t say you are a failure or aren’t good enough. Instead, it will say: “This can work, and if it doesn’t you can make adjustments and try again. It isn’t the end of the world.” This Inner Coach recognizes that the journey to success has failure along the way, and that no failure is final and counsels “You’ve got this. Go!” rather than saying “Stop. Be safe.”

The following is a four step process for enhancing your inner coach.

The first step is to figure out what you want to accomplish. Sometimes the reason you don’t notice your success is because you don’t have clear goals. For example, saying, “I want to lose weight” is a big task! Telling yourself, “I want to stick to the diet I choose for one month” or “I want to lose 5 pounds” provides a more attainable, specific finish-line.

The second step is to set yourself up to accomplish a goal by determining what you need to do and breaking the goal into small steps – steps leading in the right direction. That way you know you’re on the right track.

For example, you might want to find a new job. The steps might include updating your resume, registering with an online classified service like Indeed, researching the industry in your area, and contacting prospective employers. Along the way, you can see your progress and redirect yourself from getting off-track.

The third step is to remove obstacles and problem solve. Identify things that stand in the way. Most of the time, with planning and problem-solving, an obstacle can be removed or, at least, set aside for a while.

Things to watch for include making excuses for why you don’t follow through, scheduling too many things for the same time, and making choices that bring you further from your goal.

Finally, give yourself a well-deserved pat on the back for progress you have made. Remember you are shooting for progress, not perfection! The bigger the success, the bigger the reward.

The inner critic reigned in my life for years and as I took on the role of care-provider for my husband who has dementia it became even louder. As a child, I was expected to be perfect, anything else was unacceptable and therefore I was unacceptable – not good enough. I internalized that message; so, the ideas that progress rather than perfection could be the goal and that success is fraught with failure were foreign to me.

Providing care for a loved one was a difficult, stressful undertaking for me – particularly because it was a role I never wanted or was prepared for. Then the virus showed and the critic’s voice became even stronger. It was unrelenting with messages such as “you should be helping him more,” “you shouldn’t have yelled,” “it’s not his fault, why aren’t you more patient?” “you should keep trying to fix it for him.” The ranting went on and on.

The name I gave the inner critic was Judge Judy. She stands there in her black gown pointing a finger at me yelling “you should have.”

I have been using the above guidelines. . . and am working to turn my life-long inner critic into an inner coach. My inner coach is more compassionate and reminds me of what I have done and am doing. She reminds me of my mentor, Alice, who had only kind words and thoughtful suggestions for me about how best to move forward. But it is a work in progress, changing old ways of being into more helpful ones. What might you recommend?

I Can’t Do This Any Longer

My husband has dementia and my goal is for him is to stay home as long as possible. Yet, after four years of living with the behaviors and chaos involved, there are days when it seems as if I just can’t be his care giver or provider one minute longer. The quick answer is “don’t take it personally, it’s the disease” but that’s easier said than done – this is a wearing, discouraging, and overwhelming journey many days. But yes, I could answer the same questions, remind him over and over, and listen to the same stories thirty and forty times.

Then, the coronavirus arrived and the stresses tripled. He doesn’t understand the virus, he is home with nothing to do, he can’t go anywhere, and he is unable to have company. He asks even more questions and doesn’t remember what is said from moment to moment. I am more fortunate than many caregivers, though. My family is supportive, money is not an issue, we have a lovely home, we are physically healthy, he takes care of his personal needs, and he is with me.

I was allowing the discouraged feelings to be; not trying to get rid of or manage them, and that was fairly effective. When I was particularly discouraged it helped to ask “what do I need right now?” and then meet that need be it taking a walk, talking to a friend, or playing the piano. The bottom line was to do something for me. However, after eight weeks of sheltering in place with no breaks, those strategies were no longer effective.The truth is:
1. My values won’t let me place him in a care facility.
2. Neither of us want to live in a retirement community.
3. Neither of us want a home care provider coming in to provide respite care.
4. I don’t want to be a caregiver; yet, I am choosing to do so for various reasons.
5. Having him home is overwhelming at times and yet he is doing okay. His short and long term memory are poor, but he tries and does his best at all times.
6. My coping skills are no longer enough.

Obviously, then, if I am to continue keeping him home, my personal care plan has to be adjusted. With this in mind, I am making six changes.

The first change is to ask family members to do things with him to give me a break as we did prior to the shelter in place order.
The second change is to do more things that make me happy: shopping online, having my nails done, and getting the carpet cleaned.

The third change is to let go of certain expectations about his capabilities and what he can accomplish.

The fourth change is to take charge – tell him what to do and how to do it rather than give him choices and let him figure out how to do something because he does better with that structure.

The fifth change is to give myself permission to work on my projects for periods of time.

Finally, I am researching helpful tips on line, challenging my perceptions, monitoring my self-talk, and improving my attitude.

I am experimenting with this new plan and will alter it as needed. Because despite the frustration and discouragement, my goal remains the same: having him stay home as long as he is safe and hurting no one

The person you care for may not have dementia but a chronic, debilitating or fatal illness. However, the issues remain the same – how to live well while caring for another. What suggestions might you have?