Laudable Linkage

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I usually share these on Saturday, but I needed to wrap up the Laura Ingalls Wilder Reading Challenge yesterday. Here are some great reads if you have time:

Who Is the Holy Spirit? “If your ideas about the Spirit are divorced from the clear truths of Scripture, you will go astray into all kinds of error and ultimately damage the cause of Christ.”

The Benefit of Yielding to Jesus. Two different meanings of the word “yield,” and one leads to the other.

The Way He Should Go. “I heard the same proverb referenced by all sorts…What I didn’t frequent hear was what ‘the way they should go’ consists of.”

What’s To Be Done? Potentially, Nothing Else., HT to Challies. “In the end, there may not be anything more to do beyond the ongoing, slow Word-based ministry and giving the Spirit enough room to move without our insistence on more and more stuff to do.”

The Most Frightening Three Words, HT to Challies. A well-meaning “How are you?” can unsettle those suffering with a long-term illness or chronic pain. They don’t want to overload you, and they may not feel like going into it. Kimberly shares a better approach.

Cameraman, Lend a Hand,” HT to Challies. I’ve often wondered, when watching a video of a child crying or someone in distress, why the person filming doesn’t put down the phone and help.

Seven Questions to Ask in Evaluating Online Pundits, HT to Challies. “The digital revolution has made knowledge more accessible, the flow of information more diverse, and the ability to make your voice heard easier than ever before. The same revolution has also made invincible ignorance more sustainable, pervasive crankery more common, and the ability to discern what voices are worth listening to harder than ever before.”

Should “Broken” Genes Be Fixed? My daughter changed the way I think about that question, HT to Proclaim and Defend. “We believe the world is a better place for having kids like her in it, and we want the world to think hard about whether it really wants to go down a path of engineering a world where there are no Ruthies.”

Here’s What Iconic Historical Figures Would Look Like Today. This is strangely fascinating. An artist has rendered historical figures with modern hair styles and makeup to show what they would look like if they lived now.

I was reminded of the song, “See the Destined Day Arise” a couple of weeks ago and planned to share it during Easter week. Then I thought—why wait? As our church celebrated communion last week, as we look every Sunday, every day to the cross, we grieve at the cost of our salvation but rejoice that an able and willing Savior accomplished it. The first two stanzas were written by Venantius Fortunatus (c.530-600) and translated by Richard Mant (1837). The last stanza, chorus, and music were written by Matthew Merker. (I don’t know the church in the video: I just thought this was a nice, clear rendition.)

Remembering the loved one who has forgotten you

As a person ages, friends and loved ones often stop communicating as much.

Part of the problem is a busy schedule. When I worked in a nursing home ministry in college and then visited my mother-in-law in various facilities, I figured busyness was the primary reason so many residents seemed never to have a visitor.

But now I think perhaps people don’t visit elderly loved ones because they feel it’s futile since the person doesn’t even know them any more.

Dementia is one of the saddest afflictions. It’s heartbreaking when a loved one can’t remember who you are or how you are related.

But I can’t encourage you strongly enough to keep visiting. Why?

Because you remember.

Their biggest need is to know that they are loved and not forgotten. For the few minutes you spend with them, they are receiving personal attention.

We don’t know what they actually remember.

When a loved one can’t process thoughts well, we don’t really know what’s going through their minds. It could be there is a flicker of familiarity, but they can’t express it. Or they might remember, if just for a few moments, that you were there.

Assisted living and nursing home facilities can be lonely places.

Some residents are able-bodied and/or social butterflies, but many sit by themselves. Most of the activities involve bringing the group to the common area rather than doing anything with individuals  Most of these places are overworked and understaffed. We found a few gems in each facility my mother-in-law was in, but too many of the staff were burned out, uncaring, just punching a time card. We observed as they talked to each other over her without ever looking her in the eye or talking directly to her. One aide had eyes glued to the TV as she fed Jim’s mom rather than interacting with her. Can you imagine an existence where most people just handle you or do what’s necessary without a smile or a kind word?

Personal, focused, loving attention is the greatest gift you can give them.

You can’t assume they are well taken-care of.

When you visit a facility and arrange to place your loved one there, you assume the best. The administration sounds competent, the brochures look inviting. But we could tell you dozens of stories from our own experience, not to mention that of others. The residents often can’t speak for themselves. They need advocates to visit them frequently and bring any issues to the management’s attention.

When you do visit, here are a few things to keep in mind:

  • Don’t ask, “Do you remember . . .” people or situations. John Zeisel calls this “testing” in his book I’m Still Here: A New Philosophy of Alzheimer’s Care. He says such questions just set them up for a test they are sure to fail and can increase anxiety, agitation, and feelings of incompetence.. Sometimes they can remember the distant past more than the recent occurrences, but don’t assume. Just start talking about the person or situation you have in mind. If your loved one remembers, they’ll chime in. Instead of asking, “Do you remember me?” just say who you are. “Hi, Mom! It’s me, Jim, and your grandson son, Jason, and great-grandson, Timothy.” Mention the names but don’t make a big deal about them.
  • “Don’t alter their reality” was the cardinal rule at the nursing home my mother-in-law was in. In our college nursing home ministry, one blind lady spoke as if she lived on a plantation, even encouraging us to pick some flowers. We didn’t know whether to go along or try to bring her back to reality. Now I would know: either go with the flow or try to bring up a different topic of conversation. If they think they are in another state, or their husband is waiting for them at home, or whatever, it only agitates them to say otherwise. When my mother-in-law was in a memory-care unit, we often saw residents get quite upset if they stopped to ask us to take them somewhere, and we said we couldn’t. We learned to say, “I’m just here visiting my mom, but maybe this lady could help you,” and point them to an aide. That was better than saying, “No, I’m sorry, I can’t take you,” and having them get upset, and an aide having to come over and calm them down.
  • Divert or distract rather than arguing. If your loved one starts asking about someone who died, or asks to be taken somewhere they can’t go, or says something that doesn’t make sense, don’t try to “talk sense into them.” Jim’s mom sometimes asked to be taken to her daughter’s house 2,000 miles away. I used to remind her that she had moved to TN. But later on, I’d just say, “We can talk about it when Jim gets home.” She was mostly silent her last two years, but she would still sometimes ask about her sister, who had died long ago. Our caregiver would say something like, “I think she’s still asleep” and then start talking about something else. We tried never to lie to her, but we did redirect the conversation.
  • Have some topics of conversation in mind before you go. Sometimes it’s hard to know what to talk about. Family news is always good. But conversation can sputter after that. This is something I wish I had done better with my mother-in-law. I saw her almost every day, so when she would ask what’s new, sometimes all I could come up with was, “Well . . . I got the laundry done.” She loved news or little interesting tidbits or real-life stories. I wished I had looked for things like that to share with her when I visited. I also wished I had asked her more about her past.
  • Some might be able to play games, put together puzzles, do small crafts. If you have old family photos of people you can’t identity, this is a great time to bring them and ask about them.
  • Be cautious about gifts. Most times, they don’t really need or have room for anything. But if it’s a special occasion and you want to bring something, be aware of their situation. Don’t bring food unless you know they aren’t on any kind of dietary restrictions. And then bring food in a form they can eat (someone sent my mother-in-law a fruit basket, but she had no way to slice or peel any of it. She couldn’t have a knife in her room.) Cut flowers in a vase might be better than a plant no one has time to care for. Some other ideas:

All-occasion greeting cards (if they still send them)
Stationery and stamps (if they can still write)
Pens and pencils
Lotions (some might have skin sensitivities)
Bath items: nice-smelling shampoo, body wash, powder. Avoid bath oils – too slippery
Large-print books, magazines, crossword or word search puzzle books (if   they can still read)
Small individually wrapped chewable candies (if they can have them)
Small packages of cookies (ditto)
Pudding cups
Small throw blankets
Socks (slip-proof, if they are still mobile) and slippers
Magnifying glass
Tissues
Nice nightgowns or pajamas. (or hospital gowns if they are bedridden. We used this place often.)
Small photo albums with pictures of your family. (Big ones are too heavy.)
Pictures colored by a child

If you have a project-based ministry to the elderly in your congregation, please take the items to the person rather than sending them home with a loved one or dropping them off on the porch. The visit means more than the things.

What if you don’t live near your loved one?

Don’t stop communicating because you don’t think it will do any good. One lady who used to write to my mother-in-law would check with me occasionally to ask if I thought it was still worthwhile. I told her I honestly didn’t know if Jim’s mom would know who she was or would remember the note I read five minutes later, but for those few moments, she knew someone cared enough to communicate with her. We’re more inclined to send texts or Facebook greetings, but it’s worth the time to send a personal note to an elderly person who doesn’t have access to those other venues. Sometimes a FaceTime or Skype call can be set up. One of Jim’s brothers used to do this even after Jim’s mom no longer spoke. She could at least see him and his family and would sometimes wave a finger.

What if your loved one is being cared for by a family member?

It still helps to visit or at least communicate for a number of reasons. Your loved one needs to know you still remember and care for them. And it greatly encourages the one caring for them to have the rest of the family still participating. Caregiving can be weighty and lonely, and the interest and care of the rest of the family can be greatly encouraging. By contrast, it’s immensely saddening to have birthdays and Mother’s Days go by without hearing from anyone, even if the loved one doesn’t know what day it is.

It can be hard to visit an elderly loved one.

It takes time and slowing down. It’s hard to acknowledge the effect of years and to know they’re only going to keep declining. Their might be messy or smelly. My mother-in-law was easy to get along with, but some dementia patients are angry or combative. It might be easier to remember them as they were than see them as they are. Most people’s main regret when a loved one dies is that they didn’t spend more time with them. Do all you can while you can to avoid that regret. Even if they don’t remember you, you remember them. I’m not trying to heap guilt on you; I’m trying to lessen it.

Godly love is about giving and isn’t dependent on what the other can do for us.

They don’t have to remember you in order for you to minister to them. Our blessing them comes from:

1) The example of our Lord, who blesses us every day of our lives even though we can never repay Him.

2) Gratefulness because of all our loved ones did for us.

3) Doing unto others as we would want them to do to us. (Matthew 7:12)

It can be especially hard when the relationship has not been good, when issues have never been resolved and there’s no hope of dealing with them now. Some of my friends have exemplified 2 Corinthians 12:15 with their parents: “ And I will very gladly spend and be spent for you; though the more abundantly I love you, the less I be loved.Loving like Jesus means loving people even when they don’t “deserve” it. Love costs a great deal sometimes. As we pray to love more, we can ask that our “love may abound more and more, with knowledge and all discernment” (Philippians 1:9) and ask God to “make [us] increase and abound in love for one another and for all” (2 Thessalonians 3:12).

I’d love to hear from you about this topic. What have you found helpful when visiting elderly family members?

(I wrote a series of posts from our experience caring for my mother-in-law called Adventures in Elder Care. If you are in a caregiving season of life, you might find something helpful there. A couple of the posts there most related to this one are Am I Doing Any Good? and It’s Not for Nothing.)

(Sharing with Inspire Me Monday, Global Blogging, Senior Salon, Hearth and Home, Purposeful Faith, Happy Now, InstaEncouragment, Recharge Wednesday,
Worth Beyond Rubies, Share a Link Wednesday, Let’s Have Coffee,
Heart Encouragement, Grace and Truth, Faith on Fire)

Laudable Linkage

It’s been another good week for online reading! Here are posts I have learned from lately – maybe some of them will interest you as well.

Routine Bible Reading Can Change Your Life, HT to Challies. “But the way the Bible does its work on our hearts is often not through the lightning bolt, but through the gentle and quiet rhythms of daily submission, of opening up our lives before this open Book and asking God to change us. Change doesn’t always happen overnight. Growth doesn’t happen in an instant. Instead, it happens over time, as we eat and drink and exercise. The same is true of Scripture reading.”

Advent Reading Plans. Several doable, workable plans for reading from the Christmas-related passages of Scripture during December.

Don’t Downplay Your Suffering, HT to Challies. “One of the biggest mistakes believers can make when facing a tragedy is to minimize it. I think so many of us do it because we are lacking a robust theology of suffering.

The Most Difficult Time of the Year: How to Love Grieving Parents at Christmas.

How Long Does It Takes to Read Each Book of the Bible? HT to Lisa.

Should We Stop Publicly Shaming People?  HT to Lisa. Yes, indeed. Sometimes a public outcry helps, like the reaction to the Dove commercial a while back. But often instead of letting people learn from their mistakes, they are run into the ground and ruined for the rest of their lives.

Beyond Truth and Fiction: Loving Our Neighbors With Dementia, HT to Out of the Ordinary. The Christian alternative to lying to someone with dementia so as not to upset them.

My Husband Was Hurt by an I.E.D. The Lasting Injury Was to Our Family, HT to Challies. Sometimes devastating injuries don’t “show” on the outside and affect the whole family.

Join Me on a Ride to Malvern, HT to Challies. A favorite childhood memory, a reminder that “all of these ‘small moments’ have the potential of eternal significance for your child.”

Stop Hand Washing Your Dishes, HT to Lisa. Nice to have my preferences justified. 🙂

And a smile for the day, found on Pinterest:

Happy Saturday!

Book Review: 30 Days of Hope When Caring for Aging Parents

Hope in caregiving30 Days of Hope When Caring for Aging Parents  by Kathy Howard caught my eye both because of our own caregiving journey and because Kathy used to write for Do Not Depart, a group blog I follow.

Kathy opens with a brief introduction sharing caregiving experiences of her husband’s parents and her own. Then each of the 30 chapters begins with a Scripture passage, progresses through two pages of content relating the passage to caregiving, and ends with a short prayer.

Topics include how to still honor your parents when you’ve switched roles, “ugly emotions,” “losing them before they’re gone,” keeping peace with family members in the midst of differing opinions, forgiveness, perseverance, guilt, God’s grace in our weakness, and many others.

One point Kathy made that impacted me was that when we experience regret (over anger, impatience, or whatever), after we confess it to the Lord and receive forgiveness, we can release feelings of guilt and shame. God’s goal for those feeling is “repentance, restoration, and renewed usefulness (2 Corinthians 7:8-11). God never uses our past mistakes as a weapon against us. Instead, He desires to use them as a catalyst for our personal growth and change” (p. 65).

Another point I wish I had thought of was helping our parents deal with what they’re going through: loss of independence, failing bodies, upheaval in their living situation, death of plans and dreams, inability to participate in activities that have always brought them pleasure before, adjustments to new situations. By sharing God’s Word and truth with them, in a sympathetic rather than a preachy way, we can encourage their faith and help them renew their hope. There are aspects of this I just didn’t consider, and Jim’s mom was not one to complain or even say, “You know, I am really struggling with such and such.”

The format of this book is not an exhaustive treatise, but rather a friend sharing help, support, and information.

When you’re in the midst of caregiving, there is nothing quite like talking to or hearing from another caregiver who understands by experience all that’s involved. Kathy’s book provides that fellowship and encouragement and always points to the God of grace.

(Sharing with Semicolon‘s Saturday Review of Books, Literary Musing Monday, Carole’s Books You Loved)

 

Caregiver Resentment

Even though my mother-in-law is sweet and easy to get along with, I sometimes battle resentment over the circumstances of caregiving: feeling tied down, having strangers coming in my home at irregular times, etc. I’m guest posting today at The Perennial Gen about ways God is helping me deal with caregiver resentment.

(Sharing with Inspire Me Monday, Literary Musing Monday)

Book Review: Ghost Boy

Ghost BoyMartin Pistorius was a fairly normal boy living a fairly normal childhood in South Africa. But in 1988, at age 12, he came home from school with a sore throat. Over the next few days he lost interest in eating and only wanted to sleep. He ended up in a wheelchair, silent and unresponsive. The doctors explored psychological causes and then ran every physical test they could.

It took about a year for the doctors to confess that they had run out of treatment options. All they could say was that I was suffering from a degenerative neurological disorder, cause and prognosis unknown, and advise my parents to put me into an institution to let my illness run its course. Politely but firmly the medical profession washed its hands of me as my mother and father effectively were told to wait until my death released us all.

But at about age 16, he started “waking up,” or becoming aware, for short periods of time. By age 19, he was fully conscious. But he couldn’t let anyone know. He couldn’t speak, he couldn’t control his limbs. Even when he did begin to regain movement and could lift his head up and down and smile, people didn’t recognize that the movements or expressions were purposeful. So he was trapped in his body for six more years. At times he was frustrated and angry. Other times he used his imagination to escape into fantasy.

I resembled a potted plant: something to be given water and left in a corner.

He lived at home, but spent his days at a care center while both parents worked. One of his caregivers, who used to give him massages to work his stiff muscles, thought he might be more aware than previously thought and arranged to have him assessed.

We come to rest in front of a large sheet of acrylic glass suspended on a metal stand directly in front of me. Red lines criss-cross the screen, dividing it into boxes with small black and white pictures stuck in some of them. These line drawings show simple things—a ball, a running tap, a dog—and Shakila stands on the other side of the screen watching me intently as I stare at them.

“I want you to look at the picture of the ball, Martin,” Shakila says.

And…he did. After a series of tests, both to test his responses and different kinds of communication devices, Martin was equipped with pictures of symbols he could stare at in answer to questions and eventually outfitted with a computer which gave him a “voice.” Learning to communicate was a long, painstaking process, but it was worth it.

“If someone does not expect or is not expected to achieve, then they never will.” (Dr. Diane Bryen)

Eventually he regained more motor control, went to classes, held down several jobs, and even married! He wrote Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped in His Own Body to share his story.

One of the hardest adjustments for him was making decisions. He could remember nothing from before his illness, and life had been structured around him for so long, he didn’t know how to make decisions at first. He was glad to be able to let people know his food was too hot or cold, he was thirsty, he’d like salt, etc. But even years later, when his girlfriend too him to buy some shoes, he was overwhelmed. He had only ever had the same kind that someone else had bought him, and there were so many choices, as well as the overstimulating atmosphere of so many people and loud music, that he broke down.

Some people caring for him were excellent. Some were thoughtless or just doing a job without care for the person inside the unresponsive body. “Do they really think that a limited intellect means a child can’t feel viciousness in a person’s touch or hear anger in the tone of their voice?” Something else that came to light after Martin began to express himself more extensively was that he had been horribly abused, especially in a longer term care facility that he had been placed in if his parents went on overnight or longer trips. He had been called names, slapped, pinched, handled roughly (thrown into a chair so hard he fell face first), neglected, and sexually abused.

He had a faith that sustained him:

The only person who knew there was a boy within the useless shell was God, and I had no idea why I felt His presence so strongly. I wasn’t exposed to the rituals and traditions of worshiping Him at church and knew that I hadn’t been before my illness because my family, although they believed in God, didn’t attend. Yet somehow I instinctively knew that He was with me as my mind knitted itself back together. At times it felt confusing to be surrounded by people, utterly alone and yet aware that God was my companion. Yet my faith didn’t waver. He was as present to me as air, as constant as breathing.
___

The one person I talked to was God, but He wasn’t part of my fantasy world. He was real to me, a presence inside and around that calmed and reassured me…I spoke to God as I tried to make sense of what had happened to me and asked Him to protect me from harm. God and I didn’t talk about the big things in life—we didn’t engage in philosophical debates or argue about religion—but I talked to Him endlessly because I knew we shared something important. I didn’t have proof that He existed, but I believed in Him anyway because I knew He was real. God did the same for me. Unlike people, He didn’t need proof that I existed—He knew I did.

One unsung hero in the book is Martin’s father. In Martin’s silent years, he heard arguments between his parents about his care. His father wanted to keep him at home. His mother wanted to put him in a full-time care facility, as the strain of his care was affecting their marriage and the rest of the family. But his father insisted Martin was still part of the family and needed to remain. His mother, for a time, distanced herself from Martin, so at home all his care fell to his father, who would get up early to feed and dress him and take him to the care facility, work long hours, bring him home and feed, bathe, and put him to bed. Basically, he didn’t have a life beyond work and caregiving for years, and he did it without complaint. Martin appreciated his “quiet and steady presence,” and eventually his mother came around as well, helping him tirelessly to increase his “vocabulary.”

This book is sad and horrifying on one level, considering all that Martin endured. But it’s inspiring on another that he triumphed over it. I particularly loved what he said as he was falling in love with the girl who would become his wife: “I’ve lived my whole life as a burden. She makes me feel weightless.”

It encourages me as my mother-in-law has become less and less responsive that perhaps she does hear and perceive more than she can express, and even if not, the way she is handled will make her feel secure and loved even if words aren’t getting through.

It also angers and saddens me that such abuses and inhumane treatment goes on in care facilities. We’ve come across our share of both good and bad caregivers in the various facilities my mother-in-law has been in. That Martin should have suffered such abuse is atrocious, but that in some cases, other caregivers observed and laughed is just infuriating. And the fact that more than one could wheel him away long enough to privately sexually abuse him without anyone questioning what was going on, where they were, why they were gone so long shows up the need for better monitoring. Unfortunately, in our experiences and I am sure all over the world, those places are woefully understaffed.

But it inspires me that some caregivers went the second mile in their concern and care. The one who first noticed that Martin seemed aware and responsive used to talk to him while she worked, and that’s one thing that caused his responsiveness. After trying to make a connection with others and failing, Martin essentially shut down inside himself. As this caregiver talked with him, he would look at her and follow her with his eyes. That she would notice this and then act on it speaks so well of her. That should be the norm, but too often facility caregivers slog through the everyday thankless monotonous tasks on autopilot. We have had our share of excellent caregivers as well who take time to interact with the patient as a person and notice the details that make a difference in their care and comfort.

Some readers would want to know that there are a couple of bad words in the book, and the section on Martin’s sexual abuse is graphic but not titillating and is mostly contained in one chapter. There is a video of a TED talk with Martin here, and a sweet interview with his wife here. They made this video and submitted it along with the manuscript when they were seeking a publisher for the book:

(Sharing with Semicolon‘s Saturday Review of Books, Carol’s Books You Loved)

It’s not for nothing

Joni Eareckson Tada recently passed the 50 year mark in her wheelchair as a result of a diving accident in her teens. I so appreciate her sharing God’s grace in her life. I read a number of articles about this milestone, especially her testimony here, but this one had me thinking for a long while afterward, not just about Joni, but about her helpers.

The article mentions a wake-up crew who helps Joni get out of bed and ready for the day every morning. I can empathize with how hard that would be, even with joyful and willing helpers. We so easily take for granted the ability to use the bathroom on our own or brush our own teeth and hair.

But I thought of these helpers from this angle: many of us aren’t comfortable or don’t feel qualified to be the out-front people. We prefer to be behind the scenes, enabling someone else in their ministry. We can’t have the unique ministry Joni does, but we’d be overjoyed to have a minuscule part in helping her.

But what about those who need that kind of care and don’t have any kind of public ministry? Who don’t speak and seem less and less present every day? Like the thousands of contracted, shriveled, seemingly vacant forms in nursing homes. Like my own mother-in-law.

I’ve written before that I am not a “natural” caregiver like many people I know. I don’t think I could ever have been a nurse. But every angle we have looked at it over the years comes back to the conviction that this is the best place for her at this time. And, like Moses, Gideon, Jeremiah, and others who didn’t feel qualified to do what God was calling them to do, we trust Him for His grace to do it. And He provides, not in one fell swoop of “feeling” qualified, but in the day-by-day ministrations from Him through us.

Sometimes it seems like it’s all for nothing, this trying to encourage food into someone, cleaning up the results of eating, changing position, showering, keeping comfortable, watching out for skin breakage, etc., when there is less and less response or even recognition from the person who sleeps maybe 20-22 hours day for years now, only to do it all again the next day and the next. My aunt called it “the long good-bye.” My husband describes it as watching someone die one brain cell at a time. Sometimes we can’t help but wonder why God still has her here and when He’ll release her from this crumpled, silent body to her new glorious one in heaven.

I’ve shared before what one friend who cared for a mother-in-law with Alzheimer’s said, that sometimes God leaves them here not so much for what He is doing in their lives, but what He is doing through them in ours, showing us our innate selfishness, teaching us to love unconditionally. And I have found that to be true in my own life as well.

As I remind myself of the truths I know, I thought I’d share them with others who are caregivers now or will be someday, who labor behind the scenes, doing the same thing day after day during a long decline. The care you provide is not for nothing, because:

God has made everyone in His image and that imbues them with value.

Jesus said when we minister to others, we minister to Him.

We should treat others as we want to be treated.

God wants us to honor our parents and care for them. They cared for us and deserve our care in return.

“Pure religion and undefiled before God and the Father is this, To visit the fatherless and widows in their affliction, and to keep himself unspotted from the world.” James 1:27

“God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister. Hebrews 6:10

Godly love is about giving and isn’t dependent on what the other can do for us.

“To do good and to communicate forget not: for with such sacrifices God is well pleased.” Hebrews. 13:16

“With good will doing service, as to the Lord, and not to men.” Ephesians 6:7

When our children were little, my husband and I often lamented that they wouldn’t remember the youngest stage of their lives and the fun things we did with them, but those years were the foundation of and a major part of the overall relationship. A baby can’t articulate what he needs or thank you for responding to him (at least until he can smile). But how you care for him matters. He can tell a difference between loving touch and care or harsh treatment. I believe the same is true of the elderly. They may not be able to understand, acknowledge, or define it, but loving care contributes to their overall well-being.

There may be little to no response from the person in our care: some of my friends have even experienced a negative response. There may not be any obvious results from your ministry. But it’s not for nothing. Your loved one or patient would probably tell you how much he or she appreciates your care if they could think right about it and express it. And God knows right where He has you for now and sees your loving care.

(Sharing with Inspire Me Monday, Literary Musing Monday, Glimpses, Mondays @ Soul Survival, Wise Woman, Tell His Story, Faith on Fire)

 

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Laudable Linkage

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Once again, here are some of the reads I found thought-provoking this week:

How to Read the Bible For Yourself.

Walking in the Spirit. Probably the most helpful explanation I have seen of this. I had long ago noticed the similarities between being filled with the Spirit in Ephesians 5:18-33 and letting the Word of Christ dwell in us richly in Colossians 3, and wondered how that worked together. This is the first time I have seen it explained.

How Can I Forgive Myself, HT to Challies. “You do not need to supplement divine forgiveness with any self-forgiveness. Your forgiveness in Christ is complete. Receive it. Remember it. And rejoice in it. If your testimony is, ‘God has forgiven me,’ that is enough!”

For the mom who doesn’t have time to read her Bible. Love this. “Bible time is not only an hour at the crack of dawn, or an intense evening devotion, or a dedicated small group meeting.”

Michelangelo’s David and the Gift of Limitations, HT to The Story Warren.

Do Visitors From Your Church Really Feel Welcome? HT to Challies.

No Time For Widows, HT to Challies. The best part: “Every widow is an individual person. No one likes being lumped into a group and having assumptions made about them based on demographics. The only way to truly help a widow is to get to know her.”

Some questions I’m asking while off to my white evangelical church, HT to Challies.

An Open Letter to the Person Caring for a Loved One With Dementia, HT to True Woman. My own m-i-l was not one to “explode” in anger as is mentioned here, but I know some of you have dealt with that.

It’s Never a Good Time to Invite Kids In.

27 Things People Don’t Realize You’re Doing Because You’re a Highly Sensitive Person, HT to Lisa. I could easily identify with about half of these, and somewhat identify with more.

And a few words of wisdom from Pinterest:

Happy Saturday!

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12 Things You Should Know About Caring For the Elderly

Every now and then I come across articles like “Ten Things Your Plumber Won’t Tell You” or “12 Things Your Doctor Would Like You to Know.” Often they are pretty enlightening.

I’ve written extensively before about our experiences caring for my mother-in-law, almost four years in our home and five years before that in assisting living facilities and a nursing home, and shared some hopefully helpful tips for people in the same situation. But I got to thinking, if I ever had an opportunity to speak to a group or write one article on this topic, what are the top few truths or principles I would share? Probably among them would be these:

1. Preserve as much of their independence for as long as possible. It seems like often family members will see an elderly loved one’s need of assistance before that person does. Sometimes denial causes the elderly to think they can carry on as they always have: I think more often it’s fear of loss of independence. I’ve heard more than one person express dismay or impatience that their loved one won’t just go along with the program and make it easier on everybody and move into a facility already. But have you ever thought about what that involves? Depending on the facility and how much money is available, it means much smaller living space, selling the family home, departing with long-loved objects in order to downsize, communal meals, not being able to control your own medication or, to a certain degree, your schedule.  The first time we moved my mother-in-law into a facility, I thought it was something like a cross between a dorm room and a hospital. I liked the dorms in college: I wouldn’t want to go back to them in my later years. Think about having had your own personal space for 50-odd years and suddenly moving into one room that anyone in the facility can come into at any time. Granted, that accessibility, having the staff control medications, etc., is for one’s safety: but that doesn’t make it any easier or make one look forward to it.

2. If/when you do have to go against their wishes, be as gracious as possible about it. My mother-in-law is very much a “stay with the status quo” type of person, at least since she has been here. She has had hearing aids for as long as I remember, but when she first moved here, she couldn’t hear much at all even with the aids, even if we were sitting next to her and nearly shouting. She’d just smile and say, “You’ll just have to speak up!” Frustrating! My husband took her to an audiologist, and all along the way until she actually got the new hearing aids, she kept saying, “I’m doing all right with what I have: I don’t think we need to get new ones.” Jim just kept quietly insisting that we needed to explore the possibility, and once she got the new ones, she was pleased. She wanted to keep baking soda in her room because she used it as an antacid: Jim didn’t think the extra sodium would be good for her health. Once when I visited she just kept bringing it up and insisting it was fine. I had an “out” in saying Jim didn’t think she should have it, but we kept going over the same points of conversation. He finally compromised in letting her keep a pack of Rolaids in her drawer (which technically we weren’t supposed to do: all medication was supposed to be handed out by the nurse). I don’t think she ever used them, but it must have eased her mind just to have them. It’s hard to know sometimes when to insist and when to let something go. You have to choose your battles. But don’t make it a battle, if possible: don’t be confrontational or argumentative. Thankfully his mom was never combative, but I have friends whose parents are. It’s hard to bathe an 85-year-old adult who doesn’t want a bath and even resists it. You can let it go for a while, but eventually it has to happen. Distraction or diversion works for many things, so perhaps discussing something else while getting set up for the bath will get their minds on another track. (If any of you have tips along this line, feel free to share them!)

3. Convey to them that they are still important and useful. When we moved my mother-in-law into an assisted living facility, my husband told her she would never have to cook or clean again, and after having done those things for most of her life, she was glad to hear it! She loved having time to enjoy reading, her favorite activity. One day when she was visiting our home for a family gathering, and an old family story came up concerning something funny she had said years ago, we all laughed, including her. Then she said, “Well, at least I’m still good for something” (meaning, good for a laugh). I was stunned. I hadn’t realized that she hadn’t felt “good for something,” that she had kind of lost her purpose. One of my regrets is that I didn’t do more on visits with her, like ask her about her life and history and write the answers down to share with other loved ones, or go through a box of very old photos and arrange them in an album with her.

4. Treat them with dignity: don’t treat them like children. Very old age does have some things in common with childhood, but it is not the same. In I’m Still Here: A New Philosophy of Alzheimer’s Care, John Zeisel writes, “It’s not right to think of Alzheimer patients as entering their ‘second childhood.’ They have knowledge and life experience children don’t have.” That’s true of any elderly person. Once when my husband came to pick up his mom at her facility, the aide with her said, “It’s almost like you’ve switched places, isn’t it?” and then turned to his mom and said, “Your daddy is here, honey.” No, it is NOT like that. He had to ask her not to say things like that. Yes, the son or daughter will have to make major decisions and handle things the parent used to, and the parent may be incapable of doing many things any more, but that’s not the same thing as reverting to childhood. Especially fingernails-on-the-chalkboard grating is talking baby talk to them.

5. Do NOT put them in a facility without checking on the regularly and frequently. You would assume that everyone who works in assisted living or a nursing home is kind, professional, skilled, and will take the best possible care of each resident. We learned, sadly, that that’s not the case. I could tell you stories…my husband has said often that he’s going to write a book about this some day. Each place had some jewels in their workers, but each place also had some who were neglectful, who handled her roughly, who paid no attention to her posture, who talked over her to their coworkers and didn’t even look her in the eye while handling her in some way, who didn’t clean her face well after a meal so that she got red, rough irritated spots on her face, etc. Once I walked in to a facility, and they had her in her wheelchair in the common room with the other residents, she was bent over the side of her wheelchair at a 90 degree angle, even though there were several aides in the room, even though we bought some small pillows to help keep her upright in the chair. Plus the employees are overworked and underpaid and the facilities understaffed. On top of that, the residents might not be able to verbalize what’s wrong, either due to dementia or possibly even fear. My mother-in-law had a “don’t rock the boat” personality, and the more she declined, the more help she needed, the more her care declined. “The squeaky wheel gets the grease” is as true here as everywhere else. There were some residents who really needed a staff member with them almost 24/7 for various reasons, and that left the quiet ones like my mother-in-law unattended for too long too often.

6. Don’t forget them. Whereas #5 was more concerned about their safety and well-being, here I mean don’t forget them on a personal level. Continue to interact even if they don’t remember who you are. A lady in our church who writes notes once or twice a month to my mother-in-law checks in with me from time to time to see if she still enjoys them or gets anything out of them. I tell her, honestly, I don’t know if she remembers who the writer is, and I don’t know if she remembers anything the note said five minutes after it’s read to her, but for those few minutes, she knows someone thought about her and cared enough to jot a few lines to her. It’s incredibly sad to us when holidays or her birthday go by (and the days in-between as well) and she hears from almost no one.

7. The best thing you can give them is your time and attention. When my mother-in-law was in a facility, we tried to visit her every day. We usually sat and visited, but I’d run out of things to talk about after a while. I felt more “useful” when I could pick up or straighten her room or do something physical, but that tended to embarrass her. Likewise, gift bags, flowers, etc., are nice, but don’t feel you have to bring anything. What’s most valuable is for someone to face them, look them in the eye, talk directly to them and focus on them, or, if you live away from your loved one, a personal note, perhaps an new photo, or Face Time or Skype if possible.

8. All eating problems do not mean the end is in sight. Whenever I have mentioned eating problems with my mother-in-law to almost any health care professional, they’ll say, “Well, you know, when they get near the end, they’re just not as interested in food.” That may be true, but that doesn’t mean other factors might not be involved. When we moved my mother-in-law to our home from the nursing home, she was around 90 lbs., and we thought we were bringing her home to die. That was four years ago. I think a combination of food prepared and seasoned well, warm and not cold from sitting on a cart while food is distributed, and, most important, someone to feed her who takes time with her, all contributed to her eating well again and gaining weight. We learned that eating tires her out, so sometimes you have to give her a few bites, give her a drink, wait a bit, then try a few more bites. Even now she’ll have certain meals, or even certain days, where she’s just not interesting in eating. Since she doesn’t speak much any more, we don’t know if the food is too hot, too cold, doesn’t taste good, or if she’s just tired or doesn’t feel well. Sometimes I think she’s just not going to open her mouth because eating is the one thing she can control in her life. But that usually lasts just a day or so, sometimes a few days, and then she’s back to eating normally.

9. It is probably going to get worse. My mother-in-law has been on a something of a plateau for a couple of years now, but for a long while, if anyone asked us how she was doing, the response would be that she wasn’t doing very well. Sometimes people were taken aback that we didn’t have a positive cheery answer, like when people say, “How are you?” and expect no other answer except, “Fine, how are you?” in return, and they’re jarred a bit at any other answer, especially a negative one. Once we said, “Well, she’s declining,” and the person responded, “Well, we’re all declining.” (Sigh.) I’ve wondered what people expect when they ask that question in the waning years of a person’s life. The person may have many wonderful days, but in the long run, they are either losing abilities (in my mother-in-law’s case) or multiplying health issues, and things are steadily going downhill.

10. The caregiver needs care. Even if the loved one is in a facility rather than the home, often one of the adult children is primarily in charge of seeing to her care and needs. And of course, if she is being cared for at home, obviously that person or family is taking on the bulk of her care. The caregivers need to know they’re not alone, that everyone else cares. They may need advice, emotional support, financial support, respite. I’ve known some cases where one is the primary caregiver, but the other siblings take the parent home for a weekend or a few days. Distance or the parent’s condition may prevent that, but it’s nice if it can happen. Thankfully we’ve had friends both in church and online who have cared for parents in their home, and they’ve been highly valuable and helpful to confer with, even just to have that fellowship of someone understanding exactly what’s involved.

11. I’m not a saint, except in the Biblical concept that everyone who believes on the  Lord Jesus Christ as Savior is called a saint. Some people put caregivers on a pedestal or overly praise them, but we’re just ordinary people struggling through what we’re called to do. Appreciation or encouragement are more welcome than unvarnished praise, but it’s hard to know where the dividing lines are sometimes.

12. It’s hard. It’s hard to see one’s loved ones decline and to see their circumstances and quality of life reduced. It’s hard to feel the weight of their care. It’s hard to feel guilty about feeling that their care is weighty or about occasional resentment. My husband feels guilty that he doesn’t spend more time with his mom, but she sleeps about 20 hours a day, and it doesn’t do either of them any good for him to sit in her room while she’s sleeping. It’s hard to feel limited. It’s expensive to hire outside help – the agency we use charges $17 an hour, and we already have them here forty+ hours a week just so we’re free to run errands, make appointments, or just have a break. But we can’t just pick up and go out to eat, go on vacation, go to our son’s house, etc., without making arrangements and incurring more expenses. One friend who lived alone with her mom had people who could come over for a few hours or even a couple of days, but, still, that’s a lot to ask of someone, so the caregiver doesn’t feel the freedom to ask that often. In our case, my mother-in-law’s situation and the care needed is such that just having someone come and sit with her would not be sufficient. We’re limited even in ministry: we can’t go to everything that happens at church. My husband was a deacon when we first brought his mom home and submitted his resignation to the pastor because he just couldn’t be away for long meetings, etc., at that time. It’s hard to feel like even mentioning these things sounds like complaining.

I’ve written about this before, but what helps most is just accepting that this is our ministry for now, just like having a new baby in the house is a mother’s primary ministry. As Elisabeth Elliott has said, our limitations just define our ministry: “For it is with the equipment that I have been given that I am to glorify God. It is this job, not that one, that He gave me.” Each ministry carries its own responsibilities, weights, and cares, but “God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work” (2 Corinthians 9:8).

I’ve written from our experiences and that of friends, but, of course, every experience is different. People have widely varying capacities as they age: we know a 90-year-old who still lives at home, drives, is active at church and with her hobbies, an 80-year-old who still travels internationally and even recently remarried. I had one friend whose mother-in-law had Alzheimer’s but was physically fine, and she was able to take her mother-in-law with her wherever she went, at least in the earlier stages of the disease. And there is much, much more that could be said. But I hope you’ve been able to find some degree of common ground here and something helpful.

(Sharing with Inspire me MondayLiterary Musing Monday, Testimony Tuesday, Wise Woman, and Woman to Woman Word-filled Wednesday)

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Book Review: The Voice of Experience

voice-of-experienceSamuel and Jane K. Brody are a husband and wife medical team: he is a doctor and she is a psychiatric nurse. In The Voice of Experience: Stories About Health Care and the Elderly they bring their medical experience as well as their personal experience with aging parents to bear in discussing various issues related to health care of the elderly.

The book is divided into five sections, beginning with “Assessing the Situation” when an elderly person first starts manifesting that they might need additional care, through safety issues, quality of life concerns, aspects of decision making, and end of life issues.

There is not a clear cut way to handle many of the issues discussed: so much depends on the general state of health of the person, personal preferences, family dynamics, etc. But these chapters do give examples, good and bad, and a doctor’s advice and wisdom.

For my own purposes, with my mother-in-law’s decline over the last dozen or so years, much of this was not new to me, but I did benefit from it, and some of the end of life discussions clarified some things for me. I think this book would be helpful to anyone at any stage in the process.

It appears to be self-published and would have benefited from an editor to catch a few grammatical errors and awkward phrases, but they are very few.

Genre: Non-fiction
Potential objectionable elements: None
My rating: 8 out of 10

(Sharing with Semicolon‘s Saturday Review of Books and Literary Musing Monday,)

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