Partnering in Suffering

  Photo Credit: Pixabay

 

I hung up the phone and cried. I wasn’t guilty of my friend’s accusations, and my heart was broken.

At one time or another, we’ve all been unjustly accused, betrayed, abandoned, blamed, rejected, or used. Sometimes the pain seems unbearable. The world seems unjust. Our suffering seems pointless. and we often feel alone.

At times the world seems unjust

and our suffering seems pointless.

We can’t understand others’ anger because we know our words and actions were motivated by love but somehow met by misinterpretation. The result is agonizing. “What’s the point?” we may think.

God’s word promises a purpose in our suffering: to partner in Jesus’ sufferings. In other words, when we suffer, we are also suffering with Jesus.  “But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed.” 1 Peter 4:13 ESV

When we suffer, we are also suffering with Jesus.

Think of it like running a marathon at the side of a friend as an encourager and co-participant. This is one of the greatest purposes of our suffering–standing with Jesus in His suffering. What a privilege!

Jesus experienced pain beyond comprehension and gave His life for me. My perspective as co-sufferer with Jesus changes my attitude when I understand I suffer out of love for and in partnership with Him.

What about you?

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.

 

 

Seven Signs Bitterness Has Become Boss

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The people I admire most don’t return anger with anger.

I recently watched a friend come under horrific false accusations. They calmly and respectfully laid down healthy boundaries, but they refused to retaliate in anger. The attacks continued for a long period of time and even increased in vitriol. Remarkably, my friend persisted in prayer for his attacker, refused to speak negatively about them, and successfully defeated bitterness.

The Bible is clear about how Christians are to handle bitterness. We’re to refuse to let it have power in our lives. And we don’t have to be rocket scientists to know when it has a stranglehold on our hearts.

 

  1. We talk negatively about the other person. We may try to hide our attitude with a false agenda, but people can see bitterness, even when we’re blind to it. We get annoyed just thinking something positive about the other person. We like it when other people make snide or critical remarks about people we hold bitterness toward. Take the time to be honest with yourself. You’re not hiding anything from God.
  2. We constantly compare ourselves to the other person and get jealous. We see what other people have or how other people are treated and we think, “Hey, I deserve that!”
  3. We avoid “them.” You know what I’m talking about. Moving to the other side of the church. Dodging down another aisle at the store. Not talking to that relative any more. Not going to that group any more. We find ourselves enjoying people less and less.
  4. We’re annoyed when something good happens to “them.” Something inside us wants them to suffer because we think they’ve gotten something we deserve.
  5. We take things personally that aren’t about us. We make assumptions about things without facts. People are against us. People are talking about us. Things aren’t fair. Someone is trying to irritate us.
  6. We complain a LOT about the same things and overgeneralize perceived or actual negative experiences. We develop “tunnel vision” about a person and can only see them from our single, bitter perspective. We hold on to negative perceptions because we’ve rationalized away the positives.
  7. We think the person (or the world) owes us. We feel like we’ve been wronged, we’re owed an apology, and life is unfair.

 

So what’s the answer to bitterness?

Hopefully, we will have the honesty and integrity to see when we’ve given in to sin, repent, and take action to change our heart. Sometimes we may need prompting from the Word or from a loving, brave friend. But left ignored, bitterness will destroy us from the inside out.

Jesus gives the simple (NOT easy) solution for bitterness.

1 Peter 2:23: “When he was reviled, he did not revile in return; when he suffered, he did not threaten, but continued entrusting himself to him who judges justly.”

Jesus didn’t see himself responsible for responding to abuse and attacks. The word revile is a strong word that literally means to “lambaste” in the manner of attacking and abusing someone. Jesus chose to trust God to make things right. He remained silent.

In the face of abuse, Jesus chose to react with peace, verbally and physically, while trusting God to judge.

Easy? Absolutely not.

Possible? Absolutely, through the power of the Holy Spirit and our conscious choice to lay down what we falsely believe are our so-called “rights.”

He left vengeance in God’s hands. He did not become bitter. He prayed for his enemies’ repentance and best interests (Luke 23:34).

 

“See to it that no one falls short of the grace of God and that no bitter root grows up to cause trouble and defile many.” (Hebrews 12:15 NIV)

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.

 

What Is MS: Multiple Sclerosis Awareness

Photo Credit: Pixabay

 

Many of you know that I was recently diagnosed with the relapsing-remitting form of multiple sclerosis (MS). My diagnosis came after a life-threatening appearance of a demylenating lesion in my brain stem (specifically the pons region of my brain stem) in 1999. This was followed by more than ten years where I experienced a number of bizarre, seemingly unrelated symptoms.

Although I visited a number of neurologists and other physicians, all but one seemed to find my symptoms unrelated. Several times I was told unequivocally by neurologists that I did NOT have MS. Over those years, my husband and I moved several times, and I couldn’t any establish continuity with any doctor long enough to make sense of my history of dizziness, falling down, headaches, choking, foot cramps, finger tremors, hearing loss, nausea, and a changing gait.

Then in late 2014, I developed additional neurological symptoms and was ordered to undergo a brain biopsy of a new large lesion that had appeared in and around the area of my brain stem. The neurosurgeon was confident it was a glioma, considered to be an early form of cancer. The biopsy required a crainiotomy and resection (p. 8) , which was an additional challenge to my neurological system.

Why MS is Often Misdiagnosed
My situation is not unique. Many disorders share symptoms with MS, making diagnosis difficult. Those disorders include

Lupus: can cause muscle pain, joint swelling, fatigue, butterfly-shaped rash across the cheeks, and headaches
Lyme disease: fatigue, fever, headaches, and muscle and joint aches
Stroke: loss of vision; loss of feeling in the limbs, usually on one side of the body; difficulty walking; and difficulty speaking
Migraine: intense pain; throbbing; sensitivity to light, sounds, or smells; nausea and vomiting; blurred vision; and lightheadedness and fainting
Fibromyalgia: headaches, joint and muscle pain, numbness and tingling of extremities, memory problems, and fatigue
Conversion and psychogenic disorders: conditions in which psychological stress is converted into a physical problem — such as blindness or paralysis — for which no medical cause can be found
Sjogren’s disorder: dry eyes, dry mouth, fatigue, and musculoskeletal pain
Vasculitis: joint pain, blurred vision, and numbness, tingling, and weakness in the limbs
Myasthenia gravis: drooping eyelids, double vision, difficulty with walking, speaking, chewing, and swallowing
Sarcoidosis: including fatigue and decreased vision
Vitamin B-12 deficiency: fatigue, mental confusion, and numbness and tingling in the hands and feet
Acute disseminated encephalomyelitis (ADEM): fever, fatigue, headache, nausea, vomiting, vision loss, and difficulty walking
The National MS Society has created the following short video. It gives a simple explanation of what happens in a person’s body when they live with MS and helps us understand why the disease can be so difficult to diagnose, since MS influences every function of the brain, and therefore, the body.

The video helped me understand that because one of my largest lesions damaged the pons area of my brain, it makes sense that my breathing, swallowing, taste, sleeping, vision, hearing, balance, and walking have changed.

WHAT IS MS?

A Day in the Life of MS

dead-battery-1623377_960_720This morning my thermostat batteries died, so of course, I changed them.

No biggie, right? You’d think, but not for me. Not any more.

Ten steps from the living room couch to the thermostat to diagnose problem.
Eight steps to the drawer to get AA batteries.
Nine steps to the thermostat to try to put in new batteries.
Failed effort, due to blurred vision, weak fingers, and trembling legs.
Eight steps back to the drawer to retrieve a screwdriver for battery prying.
Eight hand-on-wall steps back to thermostat to pry with one end of the screwdriver and pound with the other as legs shake like my dryer on the spin cycle.
Eight wobbling steps back to drawer to return screwdriver, accompanied by muttered prayers.
Eight final wobbles back to couch, followed by plop-and-prayer for sleep.

At 8:30am, I’ve completed my first marathon for the day. There will be many more. A trip downstairs to do laundry, gripping the railing and leaning against the wall. Pulling myself back up the stairs carrying small loads of clothes I can manage.  Simple tasks I completed without thought by others exhaust me since being struck by multiple sclerosis (MS). Putting on pajamas or dressing  can seem insurmountable.

But not just for me–for many people who live with chronic illness.

Low Batteries: Fighting Fatigue

Medical experts report that it takes five times the effort for people with multiple sclerosis (MS) to accomplish the things healthy people can do. Put this into perspective by thinking how tired you’d be if you did five day’s work in one day every day for the rest of your life.

You can almost always assume someone with MS or other chronic illnesses are trying to beat back exhaustion. I’m in my pajamas by 6:00pm. I attend evening events very seldom. When I go to church on Sunday, I have a “down” day on Monday. I’m proud when I walk on the treadmill for five minutes. On “down” days I drive to my mailbox to conserve energy for more important things (hey, it’s a long driveway).

fatigue

The Pain of It All: Symptoms

MS symptoms vary widely. I people with MS can lose color in their vision. Their sight can also diminish in other ways. My vision has blurred, making it difficult for me to read and work on my computer, even with a 24″ monitor. Migraines can last for days and weeks. Debilitating neuropathy pain in legs, feet, and hands often escalates at night, along with  ongoing muscle spasms and cramping in legs, feet, and back.

About that Twitch: Neurological Problems

Many patients with MS find the path to diagnosis long and frustrating because symptoms can mimic so many other things: lupus, sarcoidosis, Lyme disease, stroke, and other illnesses. For this reason, other illnesses must be ruled out when making an MS diagnosis.

MS is a neurological disorder that causes the protective myelin covering over the nerves in the brain to deteriorate. The nerves become exposed, which causes lesions (tissue abnormalities), not tumors (cell clusters that grow). Brain lesions multiply over time, causing increasing disruption of brain and, therefore, body function.

My lesions attacked my brain stem. I’ve had two major attacks–the first in 1999 and a relapse in 2014. MS patients seldom return to the same threshold of health after a relapse. My relapses have affected my walking, balance, hearing, vision, swallowing, memory, resilience, and cognitive function.

For instance, I now work use a 24″ computer monitor. I must take breaks every hour to “rest” my brain.  I walk on the treadmill in 5 minute increments, which is my usual max time. I no longer work at my computer beyond lunchtime because of fatigue. I experience frequent and prolonged migraines. My legs and feet cramp continually. I take medication for neuropathy pain in my legs and feet. And like most MS patients, I’m always cold.

Takeaway: Eyes Wide Open

Suffering can bless us with a perspective on others’ pain. It can either bring us into community or isolate us; drive us to bitterness or build our awareness of the sorrow that surrounds us. Chronic illness can gift us with unique sensitivity to those who quietly suffer–not necessarily with illness.

Jesus saw the needs of those who stood at the edge of the crowd, who were unable to push to the front, who could only catch the edge of His robe, or who climbed into trees to see Him. They were all looking for someone who cared enough about them enough to reach out and help, maybe even love them.

Jesus touched unclean bodies. He used the power of His words, His hands, His presence, the hope in His eyes, His wisdom. You may be sick–but you can use your pain to touch someone else. A day in the life of your pain may have given you the gift of words, experiences, the touch of a hand on an arm, of prayers, quiet presence, hope, or encouragement needed by someone else. Are you willing to live with eyes wide open to give to others, even in your illness or pain?

Caring for a Sick Spouse

sick-partner

 

 

For the past forty plus years of our marriage, my husband and I have taken turns being sick and having surgeries. Not long after I married, I came to the realization that my husband would be undergoing knee, ankle, and foot surgeries for the remainder of his life. Dan’s walking abilities would gradually become more and more impaired. This created a hope for us to fulfill certain dreams sooner than later.

This thought intensified when I became critically ill with an undiagnosed neurological disorder in my early forties. Dan became lovingly protective of my health in the ensuing years, especially after my symptoms progressed and I underwent brain surgery. I also became increasingly concerned about Dan’s walking. We often competed over household tasks–who would do which chores so the other wouldn’t have to, both of us secretly doing laundry or shopping before the other had the chance.

I’m not sure who’s done the most caregiving in our marriage, but I can tell you Dan’s done a great job caring for me. I know that when one spouse is caring for the other, it’s easy for caregiving to overtake other priorities in the marriage. Spousal caregiving is tough, and I think that success if found in the small things.

Jimmyand CarolOwensPromo

 

 

  1. Find ways to enjoy each other. Focus on the things your loved one has always been interested in and loved. Read or listen to books about those things. Watch a TV show, movie, or series about them. Research a prominent person in that field. Or you might consider taking a fun online class. Complete a project (genealogy, writing, birdwatching, creating an e-book, or organizing family pictures, etc.
  2. Listen to music and recorded books. This doesn’t take time from your daily route and can also be enjoyable for your loved one. Check your local library for books on CD. Be sure to ask your loved one about their interests so you can come up with mutually chosen titles.
  3. Do things you like separately. Find a favorite spot in a local park, library, museum, or space nearby where you can slip away for refreshment. Spend time with friends at least once a week. Ask some from your family, church, support group, or community to give you the opportunity for respite.
  4. Create “islands” of respite each day. Step out of the house and look at the sky. Keep books in the bathroom and take short reading breaks. Ask friends to stop by and visit for an hour or two so you can walk around the black or take a drive, visit the park or library, a movie, or time to drive some place quiet and enjoy the solitude. Spend ten minutes in your garden (or your neighbor’s).  What refreshes you? Find ways to inject mini-burst of these things into your day.
  5. Find someone to confide in. This may be someone who has cared for their ill spouse or a compassionate, affirming friend. Caring for a spouse can stir feelings of anger and frustration, and husbands and wives can feel like they’re betraying their loved ones by sharing confidences and circumstances that can naturally result from the stress of caregiving.
  6. Call a friend or family member every day. You need connection to the world beyond the walls of your home. Take time to stay connected to close friends and family members. Ask about their lives, interests, and prayer needs. Whenever possible, use Skype or FaceTime. You need to see faces, and people need to lay their eyes on you.
  7. teamwork-294584_960_720Ask for help. You need help–regular breaks, physical, and emotional support. If your spouse has adult siblings, ask for their physical help or financial assistance to hire aides, respite workers, or to secure a respite facility on a scheduled basis. If they refuse, look for someone to assist in mediation–a pastor, counselor, or senior care specialist, or possibly even a lawyer. If you have adult children, ask them to help. Include your church or parish when you ask for assistance. Many churches are able to offer considerable help. And always consult county social workers and the Area Agency on Aging to see what services you qualify for. We were grateful to discover free respite care for our loved ones that allowed us getaway breaks a few times a year.

As much as possible (and it isn’t easy), try to compartmentalize spousal care from your personal time together. Try to preserve time for the two of you to simply enjoy one another. One of my most treasured memories is of watching the light in my mother’s eyes as my dad read his diaries to my mom during the years she lived with Alzheimer’s. Even in the debilitating shadow of Alzheimer’s, couples can share meaningful moments together.

PHOTO CREDIT: 9jaFlave