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.

 

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.

 

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

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 .

 

Tips for Alzheimer’s Caregivers

Tips for Easing the Life of Someone with Alzheimer’s

By Shelly Beach, Author and Caregiving Expert

 

Most people recognize that Alzheimer’s disease causes memory loss. However, it may be more difficult to understand that Alzheimer’s also deeply influences one’s emotions, mental processing, and physical capabilities. As our loved one progresses through the disease, we and other family members and caregivers must begin to focus on helping our loved one live in the moment, because they lose the capability to reason and live beyond the immediate.

Alzheimer’s experts offer a number of recommendations for how to ease the life of someone living with Alzheimer’s or other forms of dementia. These tips are intended to lower agitation, enhance focus and communication, and give your loved one a greater sense of peace and safety. Alzheimer’s can be a terrifying disease; patients live without an awareness of where they are, why they are in a strange place, and who the people around them are.

  • Keep people with Alzheimer’s active and engaged.   

Cognitive and sensory stimulation is important for them. Check to see if your community offers adult day care for
those with dementia programming. Involve them in simple family chores. Create a small indoor garden for them to
tend or set up a paint studio.

  • Focus on process and not results.   If your parent does something incorrectly, don’t correct them. If your father begins eating with his fingers, let him. People with dementia need to feel that they are accepted and loved without judgment and are part of a group. If Mom folded the laundry wrong, thank her and do it over later when she can’t see you. If Dad cleaned the bathroom poorly, thank him with a smile and sincere tone and finish the job later, when he’s not around.

  • Let your loved one feel useful.

    Depression often occurs in the early stages of Alzheimer’s. Experts estimate that up to 40% of those with Alzheimer’s struggle with depression. Your loved one is aware of their illness and feels as if they are no longer useful. Allow them to contribute—cooking, simple home repair jobs, helping with shopping or laundry, emptying the dishwasher, etc.

  • Never argue. Always agree and meet them where they are.

    Join them in the moment, in their reality, when you talk to them, especially when answering questions. For instance, “I haven’t seen Uncle George (who has been deceased for 7 years), but why don’t we get a snack and sit here and watch TV while we watch for him?” Rather than being a lie, this kind of answer diverts and redirects. It does not engage you and your loved one in an argument or you repeatedly answering that Uncle George is dead.  Adults with Alzheimer’s have lost adult reasoning and live in a hazy world, stripped of the ability to recognize and understand reality. Telling them the “truth” is often cruel and serves no purpose.

  • Give simple instructions.

    Offer no more than three options, and be sure than all of the options are appropriate. If you have a preferred option, list it last because the last option is the most likely to be chosen.

  • Never ask, “Do you remember?”   

    Always tell your loved one who you are and what your name is. If you reminisce with them, allow them to contribute information, but don’t ask them questions they may not have answers to. Asking questions only provides an opportunity for frustration. If you want to know what they’d like to have for lunch for instance, offer two or three options at a time.

  • Avoid things that could be upsetting.

    For many dementia patients, this means loud crowds, like basketball games, parties, or receptions. For my mother it also meant being in crowded waiting rooms. Many dementia patients also deal with Sundowning Syndrome, which means that agitation worsens in the late afternoon. My mom’s behavior quickly degraded after 4:00 in the afternoon, and she often became combative. When I took her to the doctor, we were taken directly to the exam room to wait (simple solution). And I scheduled appointments and activities for her before noon to minimize her frustration.

  • Learn what soothes.

    This might be music (hymns, vintage music, boogie, etc.), looking at pictures (children’s faces are often favorites), rocking or snuggling a life-like doll, old TV shows like I Love Lucy, or gardening. Sensory activities that calm your loved one should be a regular part of their routine. Learn what they enjoy: massage, foot rub, soft fabrics and blankets, a doll or stuffed animal, or something else.

It’s also helpful to learn about any events from your loved one’s past: Were they abused? Attacked by a pet or animal? Confined or incarcerated? Did they suffer prolonged illness? Lose a parent or sibling in childhood? Experience a near drowning? These events could become triggers for fear as their illness progresses.

Our goal as caregivers is to soothe the suffering of Alzheimer’s and dementia. This means doing all we can reasonably do to safeguard our loved ones’ physical, mental, and emotional well-being and to love them as we would want to be loved ourselves.

No More Tug-of-War: How to Get Dementia Sufferers to Cooperate

 

It was difficult to watch my mom progress through the various stages of Alzheimer’s disease. Sometimes she was quiet and sedate, and at others she was combative and uncooperative. It didn’t take me long to discover that certain actions, environments, and responses triggered Mom’s agitation. For instance, keeping my voice calm and my expression smiling, even when I felt tense, helped prevent Mom’s anxiety from escalating.

Dementia patients can seem stubborn, obstinate, or lazy. They may appear mean and ornery or like they don’t want to participate in life. But those actions require choice—choices those with dementia struggle to make.

Behavioral changes occur in those with dementia
because the disease process causes brain damage.

People with dementia can’t process information (seeing, hearing, speaking) quickly or the same way they did when they were younger and healthy. They have a desire to express themselves and be engaged, as all humans do. They retain the desire to be productive and relate meaningfully far longer than they have the ability.

It’s important to keep people with dementia engaged and active. There are many reasons to keep loved ones with dementia participating in activities:

  • It gives caregivers a break
  • It can decrease agitation and fear
  • It can decrease wandering, rummaging, and asking repetitive questions
  • It helps those with dementia feel productive

The brain damage from dementia can make it difficult for people

  • to initiate activity.
  • to understand directions.
  • to make choices.

This is because it can take people with dementia up to 60 seconds to process information. This fact is important to remember when gauging simple speech with a loved one living with dementia.

While we can’t changed out loved one’s diagnosis, we can alter the way we relate to them.

Changing how we approach an elder with
dementia can improve their quality of life.

Consider some of the following steps to help make your loved one’s life easier:

  1. Think of the easiest way to explain directions or a process. Break it down into individual steps.
  2. If someone is being uncooperative, try to think from their perspective about what the problem might be.
  3. When possible, modify activities to be easier.
  4. Don’t ask when you can tell. For instance, don’t say, “Do you remember who I am, Dad?” Instead, say, “Hi, Dad. It’s me, Sharon.”
  5. Be sensitive to your tone and facial expression. It’s more important HOW you say something than what you are saying.
  6. If a word upsets them, don’t use it. My mother hated the shower, so I would say, “Come with me, Mom, I need some help,” which I needed. I needed her cooperation.
  7. If someone is frightened, don’t tell them not to be, which doesn’t help. Acknowledge their fear and tell them you will keep them safe and protect them.
  8. DON’T argue and defer to logic. Acknowledge what concerns them (“I know you miss your mother.”) and try to redirect them Let’s wait for her over here. Can you help me fold towels while we wait?”).
  9. People with dementia often respond to the question “Can you help me?”.
  10. Find or create tasks that your elder can help with: sorting laundry, folding towels, vacuuming, dusting, straightening the pantry, setting the table, etc.When possible, have your loved one do tasks with If you’re cooking, as them to chop the eggs (maybe not with a knife) mix the salad ingredients, or snap the green beans.
  11. Give instructions only one step or two at a time.
  12. Set out any items that are needed for a task.
  13. If you are asking your elder to do something, do it with them to demonstrate.
  14. Get them games, puzzles, cards, books, etc. with enlarged and simplified print and visuals. People with dementia seem to be particularly fascinated with children—books with children’s faces, TV shows featuring children, etc.

Recommended activities:

  • sorting silverware
  • dusting
  • looking through photographs
  • coloring
  • walking
  • petting a dog or cat
  • listening to music yard
  • work sorting coins or nuts and bolts
  • washing windows
  • gardening

What have you found helpful? Share it with us here.

 

 

MS Awareness: What You Need to Know about MS Symptoms

Many of you know that I was diagnosed with relapsing-remitting multiple sclerosis (MS) in 2016. However, I’d struggled with demylenating brain lesions since 1999–nearly 15 years.

One of the greatest frustrations with MS is how hard it can be to diagnose it correctly. It often mimics other diseases, and people can become frustrated with a series of well-intended but wrong diagnoses (lupus, stroke, inner ear problems, other neurological diseases, Lyme disease, etc.).

The following videos are helpful in identifying common and lesser known symptoms of MS.

What to Do If You Think You or Someone You Love May Have MS

If you or someone you love is experiencing symptoms of MS, see a doctor who can assess your symptoms and recommend a neurologist if he or she believes you need further evaluation. If symptoms persist, bring it to the doctor’s attention again.

It’s important to understand that it may take time and numerous tests to get a clear diagnosis of multiple sclerosis. Doctors often use a tem called clinically isolated syndrome when someone has an experience or doctors discover a finding that indicates multiple sclerosis but does not yet meet diagnostic criteria. Doctors may also use the term possible multiple sclerosis.

Track any symptoms you may be having. Be sure to include dates. Keep a journal of the onset of any new symptoms that may have a neurological cause. With MS, everyone is different, but early MS symptoms included dizziness, vomiting, hearing problems, vision problems, a facial droop, and difficulty walking. I also had neuropathic pain in my legs and feet. The first doctors who saw me thought I had inner ear problems and Bell’s palsy or had had a slight stroke. Also, keep a record of test results.

Take someone with you to important appointments for support. Important appointments may be different for you than for me. Any appointment when I thought my doctor might confirm a diagnosis was an important appointment for me. I couldn’t trust myself to absorb information clearly and objectively. People respond to crucial information differently. It’s helpful to have someone else listening if we need a moment to absorb the idea of medication or injections or a change in diet or lifestyle.

Share your MS story with us. We love to hear from you.

For more information and support, visit the National MS Society.