Preventing Eldercare Burnout: Setting Boundaries

 

It’s hard for caregivers to learn to say no.

We want to provide the bet care possible while balancing multiple roles, the demands of illness, our communities, and the countless responsibilities of life. We are often fatigued, overworked, and unrecognized. But it is important that early on we become experts in setting boundaries as caregivers. We will always have limitations and be faced with the trap of false guilt.

So what can we do? The following tips are recommended by caregiving experts.

Set boundaries early.

  • Make a realistic list. What do you think you can do, and what do you think can’t do–both now and in the longterm. Believe it or not, you can’t do everything, and you’re not good at everything. For instance, if you’re not good at your own finances, it wouldn’t be wise to try to manage your aging parent’s money. Delegate, and talk to a lawyer who handles eldercare issues. Assist Guide Information Services (AGIS) provides comprehensive guides for caregivers.
  • Assess what will you need.This will change as time goes on. You may not need in-home care services right now, but you likely will at some point in the future. Know what types of tasks will be beyond your ability physically, financially, and in other ways. Make sure your assessment is realistic and provides a plan for the future. AARP offers a free Prepare to Care: Caregiving Planning Guide.
  • Be realistic about what you can and cannot do. Assess your health, your finances, your living situation, the distance from your loved one’s home, their health needs and longterm prognosis. What challenges lie ahead? For instance, you may desire to have your loved one in your home, your home design may make it difficult for them to live with you

 

Commit to taking care of yourself.

  • Assess your current health needs. Do you have a chronic illness that requires attention? Are you working a full-time job? What other roles and responsibilities do you need to protect?
  • Be aware of depression and signs of burnout. According to the Cleveland Clinic, caregiver burnout is a state of physical, emotional, and mental exhaustion. Caregivers who are burned out may experience fatigue, stress, anxiety, and depression. Be aware of symptoms: withdrawing from friends, loss of interest in activities, irritability, fatigue, insomnia, weight loss or loss of appetite. Be aware that caregivers often try to meet unrealistic expectations and struggle to distinguish between their role as caregiver and spouse/child/parent, etc.
  • Be prepared to scale back if your needs begin to suffer.

 

Gather a support team.

  • If possible, find an advocate. This person assists in making connections for things you need and for gathering and distributing information on your behalf when necessary. It’s sometimes easier to have others ask on our behalf than to ask ourselves. And in times of crisis, it can be helpful to have someone serve as our contact person.
  • Ask for help. Consider family, neighbors, community services, church support, and other available assistance. Call the Area Agency on Aging in the county where you parent resides and ask for an in-home assessment and information on available resources.
  • Find a support group—online or face to face. If your loved one has been diagnosed with a chronic illness, disease-specific support groups can be helpful. Two respected general groups are the Caregivers Action Network (CAN) and the Caregiver Alliance.

For inspirational and practical reading, check out Precious Lord, Take My Hand: Meditations for Caregivers and Ambushed by Grace: Help and Hope on the Caregiving Journey.

 

A Theology of Suffering

Photo Credit: Pexels

 

I recently took much needed time for myself for a week of intensive trauma therapy. I’ll reserve this topic for another time, but while I was there, I spent time grieving losses, wounds, and putting a long list of trauma stories in the past.

No matter who you are, life is hard. And yes—God is good, no matter how hard our life has been.

As Christians, we’re called to suffer. We often fight against this idea, thinking a loving God would always want us to experience blessings and prosperity. “After all,” we ask, “how can a good God watch his children suffer?”

As parents, we would never willingly put our children through suffering, right?

Well, that’s really not true. One of our kids was born with a medical condition that required extensive testing. As much as we hated it, my husband and I had to subject our baby to torturous tests they were too tiny to comprehend. We even asked the doctors if these procedures could be processed by our child’s preverbal mind as abusive. He assured us that our baby would be okay, but I was still doubtful.

But in spite of the pain, we knew our child had to endure suffering in order for doctors to determine the appropriate medical protocol for treatment.

What was needed for our child’s long-term wellbeing surpassed the immediate discomfort of their pain.

Romans 5:3-5 states: “And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.”

I’d prefer not to live with chronic illness and pain. Pain is discouraging, debilitating, and isolating. But I do not lose hope in suffering, knowing that God’s strength can be seen in my weakness, that I am strongest when I find my strength in Him, and that perseverance builds my faith and hope through the power of the Holy Spirit.

A theology of suffering allows us to understand the reality of suffering around us within the context of a loving God.

Suffering is not evidence of absence of faith.

Suffering is not “bad” and something that should be avoided.

Suffering is not a good that should be embraced.

Suffering is a necessary aspect of spiritual growth.

God delivers us through suffering. He grows us within the context of community through suffering. He pulls us closer to Himself through suffering. God grows us spiritually through suffering, which is an insidious part of the world we live in. We gain authentic entry into the lives of others who suffer through our own experiences and knowledge of God’s unfailing mercy and grace in our time of need. Suffering is the battleground of our faith, where we face our fears, our pride, our idols, and learn to trust God for Who He Is.

Everything about this world has been broken by sin, including bodies that are born touched by the fall of humanity in the garden of Eden. As God’s children we can rejoice in suffering—not because we enjoy it, but because pain does not leave us in shame or diminish us; it draws us closer to our ever-faithful Savior and makes us more like Him.

Be blessed by Every Single Tear, produced by Music for the Soul. Click on Every Single Tear, then Preview.

The Isolation of Post-Traumatic Stress Disorder

One of the most frustrating aspects of living with trauma and PTSD is isolation.

It can be virtually impossible to explain how you feel or why you feel the way you do to other people. This is often a source of shame and embarrassment. People with PTSD often find themselves isolating. They may also give partial explanations to friends and loved ones because they know that the reality that they live will sound senseless to those who haven’t experienced it. Friends and family cannot understand how trauma alters the physical function of the brain because they have not experienced it.

People make judgments based on their experience.

We see a behavior that seems “odd,” and instead of wondering why or seeking out the story behind the behavior, we make assessments and draw conclusions. Trauma and PTSD are the why beneath many behaviors that are easy to judge: obsessive-compulsive disorders, self-abuse, anxiety and depression, addictions, self-harm and self-hatred, eating disorders, and many other negative coping mechanisms.

PTSD and social anxiety disorder (SAD) often occur together. 

A diagnosis of SAD requires frequent and unending fear of social situations or situations where you are expected to perform in some way. (My symptoms peaked after a brain surgery and neurological episode that also affected my brain function.) You may also feel fearful about appearing anxious or acting in a way that will cause embarrassment or humiliation. You avoid situations that cause fear.

This was my experience, and friends interpreted my behavior as rejection. I was chastised, spiritually scolded, judged, and ultimately I decided that my friends were unable to offer the support I needed.

In retrospect, I can see that my behavior looked like rejection. But fear, not rejection drove my behavior, and at that time I could not find effective therapy to help with my symptoms.

People with PTSD feel isolated because others can’t understand what they have never experienced.

I incurred my greatest traumas caring for others. I would never change that. However, I was unprepared for the trauma symptoms that eventually followed. Eventually, I found compassionate friends who understood. They came alongside me without judgment and listened. They asked what support looked like. They learned about PTSD and trauma. They let me cry and grieve. They did not give easy answers but still spoke the truth.

Eventually I found effective treatment through the Instinctual Trauma Response Method, a treatment approach that effectively rewires the disconnection that occurs between the right and left hemispheres of the brain during a traumatic event. The ITR Method gives the trauma story a beginning, middle, and an ending and recodes the event in a way that allows it to be filed in the brain as a completed memory–in the past. More information about this treatment is available at HelpforTrauma.com.

The cognitive distortions that accompany trauma and PTSD also contribute to isolation.

People who live with the symptoms of PTSD withdraw because their brain is controlled by fear caused by adrenaline and cortisol released during traumatic events. Their brains become “stuck” in a fear response. Unfortunately, friends and loved ones often believe that logic and rationality will provide a solution to fear, when in actuality, the brain needs to be recoded.

Cognitive distortions include filtering out the positive and magnifying the negative, black-and-white thinking, jumping to conclusions, overgeneralizing catastrophizing (disaster will strike at any time), blaming (other people are responsible for our problems), “shoulds” (rules about how others and we should act), emotional reasoning, and other reasoning fallacies. This makes it difficult for people with PTSD to make well-reasoned decisions and to trust people.

People with PTSD need medical assistance to first address the physical damage in the brain. PTSD is a physiological problem that causes mental health symptoms. Addressing the spiritual aspects of symptoms and behaviors should come after an individual receives effective trauma treatment that restores the ability to make reasoned choices, control emotions, and see one’s self from a healthy perspective. Just as a diabetic needs appropriate medical treatment for the pancreas, the individual with PTSD needs appropriate medical treatment for the brain. Both should come accompanied by prayer and reliance upon God, our Ultimate Healer.

If you know someone who lives with PTSD and trauma, they also struggle with feelings of isolation. They need compassionate friends who are willing to listen and learn about trauma and PTSD. More than anything, they need the relentless love of Jesus, who never leaves us or forsakes us.

 

Walk in Love

Our kitchen window and back yard look out over a beautiful field edged by woods and orchards. Its beauty has often called me to an evening or morning stroll, but I must admit that I’ve never ventured beyond my fence.

You see, this idyllic expanse of acreage holds unseen “treasures.” Neighbors frequently use it for exercising their horses or pasturing their cows. The property must be maneuvered with one’s eyes as much as one’s feet.

Ephesians 5:2 tells us to “walk in love, just as Christ also loved you and gave Himself up for us, an offering and a sacrifice to God as a fragrant aroma.” Walking in love toward others is more than just a warm, fuzzy feeling.

But what does walking in love look like?

Walking indicates steady forward momentum.

Love isn’t a one-time act, or something we turn on and off with our emotions. “Walk” indicates continued motion. We don’t get to sit down on the job because we grow weary with someone’s attitude or behavior.

Walking isn’t running.

We set a deliberate pace that will carry us for the required distance. This requires wisdom, refreshing ourselves, and building spiritual resiliency.

Walking through a messy world requires me to keep my eyes on where I place my next step.

It’s easy to lash out in self-defense, use conversation to slice and dice others in our hurt, or abandon people when we feel hurt. But loving others means every word and action should move us forward to glorify God and honor others.

Walking in love requires sacrifice (Ephesians 5:2).

Do I demonstrate love in the way I respond to people in stressful situations—the person who cuts me off in traffic, the snippy mom of the kid who got our child in trouble, our unreasonable and unscrupulous boss, or our irritating neighbor? Our love for others often shows up in small moments of irritation.

The key to loving others is loving God with all our heart, soul, and strength.

Worship Him in Spirit and truth with other believers (John 4:24). Grow under the teaching of the Word of God, and allow it to speak to your heart (Hebrews 10:25). Talk to God personally in intimate prayer. He wants to spend time with you. The more you know Him, the more a genuine love for others will pour from your life.

Repetition and Alzheimer’s

Alzheimers-pixabayPeople with Alzheimer’s or dementia often say things over and over.  They may repeat a word, question or activity. For instance, when a relative of mine advanced in his illness, he called family members with the same question six or seven times a day with the same question. It would have helped him and us better cope with his illness if we had better understood the underlying causes of his repetition.

But what causes this behavior? In most cases, the person’s memory and thinking ability has deteriorated because of the disease process. They are confused, disoriented, and looking for comfort, security, familiarity, and reassurance.

Causes

The main cause of behavioral symptoms in Alzheimer’s and other progressive dementias is the deterioration of brain cells. This causes a decline in the individual’s ability to make sense of their world. In these situations, most people don’t remember that they just asked a question or made a phone call.

People with dementia might ask repeated questions for other reasons. They may be expressing anxiety, asking for help or experiencing frustration or insecurity. For this reason, it’s important for caregivers to look beyond the question to the root cause. This task can be difficult, but our loved ones often provide clues with facial expressions and body language.

Because people with Alzheimer’s gradually lose the ability to communicate, it’s important to regularly monitor their comfort and anticipate their needs.

How to Respond

  • Look for a reason.
    Repetition may be a symptom of an underlying concern. Does your loved one repeat themselves more often at a certain time of day or in certain environmental surroundings? Could any external factor be triggering fear or anxiety?
  • Focus on their emotion, not their behavior.
    Take note of their tone of voice and facial expressions. Do you sense fear? Anxiety? Pain or discomfort?
  • Turn the action or behavior into an activity.
    Ask for help—sweeping the floor, dusting, folding towels, helping with a simple recipe, making a sandwich, and raking leaves.
  • Stay calm, and be patient.
    Reassure the person with a calm voice and gentle touch. Don’t argue or use logic, which will only frustrate your loved one.
  • Give an answer.
    Provide an answer each and every time you are asked. If the person with dementia is able to read and understand, consider writing down the answer and place it in a location where it is easy for them to see. But do not express frustration with your tone or body language, no matter how many times they ask. For them, every time is the first time, and they are asking with the innocence of a child.
  • Engage the person in an activity.
    Diversion can be helpful. Keep a list of simple chores, games, puzzles, and activities on hand, and try to redirect in a task that they enjoy doing.
  • Use memory aids.
    If the person asks the same questions over and over again, create reminders by using notes, clocks, calendars or photographs.
  • Accept the behavior, and work with it.
    Repetitive questions can be intensely annoying, but given the context of life, try to place the behavior in perspective. Repeating is part of the disease. It is not harmful. It is not personal. As much as you are able, be thankful for engagement with your loved one.

For more information and great resources on Alzheimer’s, visit the Alzheimer’s Association. You can also check out my books on caregiving:

Precious Lord, Take My Hand: Meditations for Caregivers

Ambushed by Grace: Help and Hope on the Caregiving Journey

It Is Well with My Soul: Meditations for Those Living with Illness, Pain, and the Challenges of Aging

Taste and See that the Lord Is Good

by Shelly Beach
© 2017

strangelemons-Pixabay

When I was a kid, my dad used to bring home unusual food for our family to try: cherimoyas, dandelion greens, sassafras, fiddleheads, jackfruit, jicama, grasshoppers, various assorted animal meats and organs, smelt, lutefisk, and I’ll end the list there.

Taking that first taste took a bit of courage for me. Often the food looked distasteful and  unpalatable. My dad seemed to think it a mark of moral character to force us to try something new that would expand our palate and our experience. And he also wanted us to understand that judging by what we see can often be misleading.

The Bible tells us to “taste and see that the Lord is good.”

Life serves up both the bitter and the sweet. We’ve all faced distasteful, horrible experiences. You know, things that make us want to cover our mouths and cry “No!” like toddlers being asked to eat parsnips. Something unwanted stares back at us from the table, when we’d much rather down  our favorite foods.

bread-Pixabay

When something unwanted is placed before us, God asks us to trust Him, and like children we often clamp our mouths shut.

We don’t want to.

It’s too hard, too terrible, too painful, too frightening.

And the truth is that terrible, hard, painful, and frightening things are often unsavory and hard.

But the greatest truth is that nothing is sweeter than God’s goodness and love for us.

When we trust God in the terrible and the hard, we “taste” His goodness, His faithfulness, His perfect peace, His incomparable presence.

But tasting God’s love and care for us requires several things of us:

  • Trusting God implicitly because of who He is. This requires acting on our will and commitment to God’s Word, not our emotions. Trusting God is also a learning process.
  • Looking at life from God’s perspective. Circumstances are temporal realities with eternal implications. Conversely, God is an eternal being who works for our good in our temporal circumstances. What we see now is superficial. God is at work in the whole of eternity to work out even dire temporary circumstances for our good.

Are you facing the terrible, the hard, the frightening, the disastrous, the overwhelming? Taste God’s goodness. Trust who He is. Look at life from His perspective, and trust Him to be at work for your good.

“I will bless the Lord at all times;
    his praise shall continually be in my mouth.
My soul makes its boast in the Lord;
    let the humble hear and be glad.
Oh, magnify the Lord with me,
    and let us exalt his name together!”  Psalm 34:1-3 ESV

Caregiving: Tips to Help Prevent Wandering

© 2017 Shelly Beach

Caregiving Journey

Wandering is a common behavior among those with dementia. People with dementia wander for a variety of reasons, which include

  • Pain
  • Discomfort
  • Agitation
  • Emotional anxiety/fear
  • Memory loss
  • Confusion

 Addressing the root causes of each of the above issues will reduce your loved one’s urge to flee

When someone is uncomfortable, they try to escape cause of their discomfort. When someone doesn’t recognize where they are, they go in search of a place they remember or that feels familiar

If a person is confused and disoriented about where they are, they will search for answers.

 

Ways to Keep Your Loved One Safe:

  • Educate your neighbors and people who are around your loved one.

Let your neighbors that your parent or loved one may wander and to gently stop them, call you to get them, and lead them to safety. Show them a recent picture so that they can identify your loved one.

  • Educate family members and caregivers in a similar fashion.
  • Create a strategy for finding your loved one. Circulate it among family, friends, and close neighbors. For instance, search your home, yard, and call close neighbors and ask them to look in their area. Request a Silver Alert from law enforcement.
  • Use technology, such as GPS watches and other tracking systems.
  • Prepare your home. Consider door alarms and door camouflage (large “stickies” thatlook like bookshelves or other disguise to cover doors). Contact Scott Silknitter at R.O.S. Therapy Systems http://www.rostherapysystems.com .