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.
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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)

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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 just cannot imagine – it would definitely take the grace of God to do that. 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 (I’ve shared before our journey with my mother-in-law through assisted living, nursing home, and then to our home.) 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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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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The Introvert in Assisted Living

img_1894One of the things that stood out to me in Quiet: The Power of Introverts in a World That Can’t Stop Talking by Susan Cain was just how much society is set up for the extrovert, from schools to businesses. I don’t know if she mentioned assisted living facilities or nursing homes, but I found that they, too, were developed primarily with extroverts in mind.

Most activities at the facilities my mother-in-law has been in involved  trying to get everyone together in the common room for some event or performer. We’d get a calendar of events every month, filled with exercise classes, bingo, craft times, magicians, movie nights, and various groups coming to sing. I’m sure many of the residents loved a lot of those opportunities.

My mother-in-law was always content with a small circle of friends. She never drove. Her husband got groceries and ran most errands. She enjoyed going to church and helping with Awanas there until she couldn’t hear well enough to continue. A big portion of her dislike of getting together in large groups had to do with her hearing. She has worn hearing aids in all the nearly 40 years I have known her, and she told me once that in crowds, the aids magnified everything, so it was not only hard to pick out the voice of the person you were talking to, but it was unnerving that everything was so loud (they may have improved on that aspect now – I’m not sure). But even besides the hearing issues, she preferred home to just about anywhere else. They loved to go visit family or a handful of close friends, or go and get wood in the hills for their wood stove. She didn’t have many hobbies besides reading, her favorite activity when her work was done. She and her husband loved to watch the Atlanta Braves baseball games together and tinker in their garden or around the house.

One of our reasons (not the main one) for having her in assisted living rather than in our home was so that her world wouldn’t be reduced to just us. But when any of the aides asked if she’d like to come for whatever was going on down in the common room, she’d politely say no, she’d like to just stay in her room and read her book. Occasionally they could get her to if they didn’t ask, “Would you like to…” but rather just said, “It’s time for…” If they started helping her out the door for something that she seemed to be expected to do, she wouldn’t protest, though she didn’t like it (you do have to be careful of that kind of thing, though, so that you’re not running roughshod over their wishes). But once when I walked in and she was out with the others listening to a church group, she couldn’t understand what they said when they were talking, but she could get enough of the melody of old familiar hymns that she could sing along.

Once when I was trying to encourage her to participate more and telling her it would be good to get out of her room sometimes, she said, ” I DO get out of my room three times a day for meals!” Residents had to go to the common room for meals and sit at a table with two or three others (unless they were sick, and then a tray was taken to their room). And I thought, that’s true, and that’s quite a lot of social interaction compared to her life before assisted living. So I didn’t urge her that way any more.

She enjoyed coming with us to my son’s basketball games and to our home and church. We would take her out to eat with us sometimes, and I could tell she was tense and not entirely comfortable, but as long as we ordered for her (so she wouldn’t have to) and stayed close, she was fine.

Now, of course, with her decline over the years, her lack of mobility and speaking, about the only place she goes is outside occasionally in her wheelchair.

I know it was more cost effective and needed fewer workers to do things as a group rather than have one-on-one activities. There were just a few individual activities they did that worked well. A couple of the places would bring in therapy dogs and take them to individual rooms for residents to pet and interact with for a short time. She always had pets until assisted living, so I think she enjoyed that. One activity director would come to her room and paint her fingernails. I don’t think she ever painted her fingernails in her life before that, so I never knew quite what she thought about that one. But at least it was one-on-one.

My husband and I often thought that someone could make a business out of being a personal trainer in those kinds of facilities. My mother-in-law was under a physical therapist’s care at different times, but eventually their time with a patient comes to an end, and they leave them with a list of exercises. My mother-in-law never did the exercises on her own and didn’t want to go down to the group exercise classes, but she would work with the physical therapist (as she declined, she needed my husband to be there for the first few sessions so they could learn to communicate with each other. He was from Croatia, and she couldn’t understand him, so he thought she was just being uncooperative, and she didn’t really care if he came back or not. :-/ But after just a few visits with my husband there to interpret for her and urge her on, and showing the therapist how to communicate with her, they got along quite well.) We didn’t want our own visits with her to be all about exercising, so it would have been nice if there was someone on staff, or even someone who worked with different facilities, to come in and help people with their exercises.

One lady who used to visit my mother-in-law used to read and discuss with her parts of the Reader’s Digest, her favorite magazine. Nowadays, visitors often read a part of the Bible to her, valuable since she can’t read for herself any more (it’s important to remember if you are reading to someone with hearing problems that you stand or sit where they can see you clearly and speak loudly). Other one-on-one activities that we’ve done and others could do are taking her outside (one facility had a lovely screened in porch) for a change of venue, looking through pictures or photo albums with her (people love to talk about their families), or show her things on the computer. Sometimes when we had her over for a meal, my husband would show her some of the family members’ Facebook pages, or use Google Earth to see some of the places where they used to live. We talked some about her life before I knew her (I discovered she had been the editor of her high school newspaper!), but I wish I had done that more and then written it down. I also wish I had come up with some bit of interesting news or information to share with her. Often our conversations would start out with, “Well, what’s new?” And I’d reply, “Well, not much.” When you visit someone almost every day there is really not much new every visit. I did share family and church news and sometimes current events, but I wish on those days when I didn’t have anything new to share that I had taken the time to look up or come up with something she’d find interesting. I also wish I had put some of her old photos in a scrapbook with her, not just for the activity, but to hear more about the people in them.

Although my mother-in-law would not have had the dexterity or interest in these, some might enjoy games or puzzles (although she did enjoy Scrabble sometimes at our home. We had to take it very slowly and she’d argue with us about words like “qi” and “xi.” 🙂 ). Some might even enjoy some of the group activities if they have a companion they know to go with them, at least the first few times.

The biggest help, though, both in any facility or in our home now, is just visiting with her personally. At different times over the years different individuals from our church would take it upon themselves to just go see her. Sometimes different groups within the church or community would make something for residents and bring it to their rooms, and that was nice, but really, the main help was just a short time of personal conversation and interaction.

When I was in college, one of the ministry groups I participated in for a couple of years was a “foster grandparent” program. There were other groups from college who would do Sunday morning and week night services at a nursing home, but our group would ask for names of residents who didn’t get as many visitors, and we would each choose two and then spend Friday nights visiting those two, just to talk and get to know them. I still have fond memories of “my ladies.”

Of course, staff members do not have time to do all of these things, and some are best done by family. But for those like the activities director who only painted fingernails, ministry groups, and individual visitors, these are a few ideas of things to do with one older person rather than a group activity.

Social interaction is important to every person, but introverts prize it on a smaller and more infrequent scale, with one or two people and quieter activities. That may be a little more time- and labor-intensive than group activities, but it can be highly valuable for both sides.

For more in the Adventure in Eldercare series, click the graphic below.

Eldercare

(Sharing with Inspire Me Mondays)

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Laudable Linkage

Before I get to another installment of my bimonthly roundup of recent noteworthy reads on the Web, I wanted to mention Write31Days. The idea is to choose a topic that you can blog about for the 31 days of October. I’ve participated the last few years with 31 Days of Missionary Stories, 31 Days of Inspirational Biographies, and 31 Days With Elisabeth Elliot. I’m still undecided about this year – and October 1 is only a week away! It is a lot of work, and I’m a little afraid of over-burdening readers with so many posts. But I enjoyed and benefited from it before and received positive feedback. So I am still praying about it. One topic foremost in my mind was one I was actually thinking about compiling into a book, and I thought doing it for Write31Days might be a good precursor for that. Then I thought – why would anyone buy a book if the info. is here already. 🙂 So I am still thinking and praying. At any rate, I wanted to let you all know about it in case you might want to participate as well. This year’s Write31Days page gives you the guidelines, a list of categories, links back to previous topics, etc.

On to this week’s links:

Is the Bible Foundation to Christianity? (Short answer: Yes! But here are good reasons why.)

Understanding your Bible—The Big Picture View.

What God Does With Your Sin.

Find a Friend to Wound You.

The Beginner’s Guide to Conflict Resolution.

A Secret to Parenting that No One Tells You: The Strength is in the Struggle.

5 Practical Guidelines for Reading the Old Testament Laws. This is probably the hardest section of the Bible to read – maybe after the genealogies – but these help put them in perspective.

Some Things That Have Helped Me in My Struggle With Anxiety.

Feed My Sheep. I wish I had thought more like this when my mother-in-law was in assisted living and a nursing home.

Christians, Cribs, and Co-Sleeping. I’m linking to this not for the discussion about where babies should sleep, but for how she applies truths here to others areas of parenting and faith and practice. There are fundamentals and then there are secondary issues, and on the latter we need to give each other grace to be different.

Beautiful Books and A Beautiful Book List.

And a couple of videos to give you a smile: an adorable three year old and her dad singing “At Last I See the Light” from Tangled.

And this:

Happy Saturday!

Bible Verses for Caregivers

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One of the first things I learned about caring for my mother-in-law was that I could not do it in my own strength. There are some Bible verses that I go to again and again. I thought I’d jot them down here both for my own remembrance and also for other caregivers. Of course, none of the lists is exhaustive, and I will probably add to them as I discover more.

The need to care for aging parents:

  • Honour thy father and thy mother: that thy days may be long upon the land which the LORD thy God giveth thee.  Exodus 20:12
  • And he said to them, “You have a fine way of rejecting the commandment of God in order to establish your tradition! For Moses said, ‘Honor your father and your mother’; and, ‘Whoever reviles father or mother must surely die.’ But you say, ‘If a man tells his father or his mother, “Whatever you would have gained from me is Corban”’ (that is, given to God)— then you no longer permit him to do anything for his father or mother, thus making void the word of God by your tradition that you have handed down. And many such things you do.” Mark 7:9-13, ESV
  • But if anyone does not provide for his relatives, and especially for members of his household, he has denied the faith and is worse than an unbeliever. 1 Timothy 5:8, ESV
  • If any man or woman that believeth have widows, let them relieve them, and let not the church be charged; that it may relieve them that are widows indeed. 1 Timothy 5:16
  • Therefore all things whatsoever ye would that men should do to you, do ye even so to them: for this is the law and the prophets. Matthew 7:12
  • As I have said before, this doesn’t mean that every Christian must care for elderly loved ones in their own homes, but they must see that they are well cared for.

The need to care for widows:

  • 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

Serving:

  • Jesus knowing that the Father had given all things into his hands, and that he was come from God, and went to God; He riseth from supper, and laid aside his garments; and took a towel, and girded himself. After that he poureth water into a bason, and began to wash the disciples’ feet, and to wipe them with the towel wherewith he was girded…If I then, your Lord and Master, have washed your feet; ye also ought to wash one another’s feet. For I have given you an example, that ye should do as I have done to you. John 13:3-5, 14-15
  • Even as the Son of man came not to be ministered unto, but to minister, and to give his life a ransom for many.  Matthew 20:28
  • For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in; naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me. Matthew 25:35-36, 40
  • Whosoever will be great among you, let him be your minister; And whosoever will be chief among you, let him be your servant: Even as the Son of man came not to be ministered unto, but to minister, and to give his life a ransom for many. Matthew 20:26b-28
  • Now we exhort you, brethren…comfort the feebleminded, support the weak, be patient toward all. I Thessalonians 5:14
  • Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward. Matthew. 10:42
  • To do good and to communicate forget not: for with such sacrifices God is well pleased. Hebrews. 13:16
  • 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
  • With good will doing service, as to the Lord, and not to men. Ephesians 6:7
  • Well reported of for good works; if she have brought up children, if she have lodged strangers, if she have washed the saints’ feet, if she have relieved the afflicted, if she have diligently followed every good work. I Timothy 5:10
  • Bear ye one another’s burdens, and so fulfil the law of Christ. Galatians 6:2

Love:

  • A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.  John 13:34
  • This is my commandment, That ye love one another, as I have loved you. Greater love hath no man than this, that a man lay down his life for his friends. John 15:12-13
  • And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us. Romans 5:5
  • For the love of Christ constraineth us; because we thus judge, that if one died for all, then were all dead: And that he died for all, that they which live should not henceforth live unto themselves, but unto him which died for them, and rose again. 2 Corinthians 5:14-15
  • And I will very gladly spend and be spent for you; though the more abundantly I love you, the less I be loved. 2 Corinthians 12:15
  • With all lowliness and meekness, with longsuffering, forbearing one another in love. Ephesians 4:2
  • In speech, conduct, love, faith and purity, show yourself an example of those who believe. 1 Timothy 4:12, NASB
  • And walk in love, as Christ also hath loved us, and hath given himself for us an offering and a sacrifice to God for a sweetsmelling savour. Ephesians 5:2
  • May the Lord direct your hearts to the love of God and to the steadfastness of Christ.
     2 Thessalonians 3:5, ESV
  • May the Lord make you increase and abound in love for one another and for all, as we do for you. 1 Thessalonians 3:12
  • Ye yourselves are taught of God to love one another.  1 Thessalonians 4:9
  • Seeing ye have purified your souls in obeying the truth through the Spirit unto unfeigned love of the brethren, see that ye love one another with a pure heart fervently. 1 Peter 1:22
  • Finally, be ye all of one mind, having compassion one of another, love as brethren, be pitiful, be courteous. 1 Peter 3:8
  • Above all, keep fervent in your love for one another, because love covers a multitude of sins.  1 Peter 4:8
  • If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. If I give away all I have, and if I deliver up my body to be burned, but have not love, I gain nothing.
    Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. 1 Corinthians 13:1-7, ESV
  • Beloved, let us love one another: for love is of God; and every one that loveth is born of God, and knoweth God. He that loveth not knoweth not God; for God is love. In this was manifested the love of God toward us, because that God sent his only begotten Son into the world, that we might live through him. Herein is love, not that we loved God, but that he loved us, and sent his Son to be the propitiation for our sins. Beloved, if God so loved us, we ought also to love one another. No man hath seen God at any time. If we love one another, God dwelleth in us, and his love is perfected in us. 1 John 4:7-12
  • And we have known and believed the love that God hath to us. God is love; and he that dwelleth in love dwelleth in God, and God in him. 1 John 4:16

Encouragement:

  • Therefore, my beloved brethren, be ye stedfast, unmoveable, always abounding in the work of the Lord, forasmuch as ye know that your labour is not in vain in the Lord.  1 Corinthians 15:58
  • We glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us. Romans 5:3b-5
  • And let us not be weary in well doing: for in due season we shall reap, if we faint not. Galatians 6:9
  • 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

Source of Strength:

  • He giveth power to the faint; and to them that have no might he increaseth strength.  Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 41:29-31
  • Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10
  • As thy days, so shall thy strength be. Deuteronomy 33:25
  • The joy of the LORD is your strength. Nehemiah 8:10b
  • But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you. Matthew 6:33
  • The Lord is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him. Psalm 28:7
  • I can do all things through Christ which strengtheneth me. Philippians 4:13
  • Abide in me, and I in you. As the branch cannot bear fruit of itself, except it abide in the vine; no more can ye, except ye abide in me. I am the vine, ye are the branches: He that abideth in me, and I in him, the same bringeth forth much fruit: for without me ye can do nothing. John 15:4-5
  • He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things? Romans 8:32
  • Therefore seeing we have this ministry, as we have received mercy, we faint not. 2 Corinthians 4:1
  • And God is able to make all grace abound toward you; that ye, always having all sufficiency in all things, may abound to every good work. 2 Corinthians 9:8
  • But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith, Meekness, temperance: against such there is no law. Galatians 5:22-23
  • But my God shall supply all your need according to his riches in glory by Christ Jesus.  Philippians 4:19
  • Strengthened with all might, according to his glorious power, unto all patience and longsuffering with joyfulness. Colossians 1:11
  • But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us. 2 Corinthians 4:7
  • And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong. 2 Corinthians 12:9-10

I probably should have a section about selfishness, because that is what I wrestle with the most. But a lot of verses under Service and Love deal with that.

Linda has a different list here. Our lists overlap a bit, but her situation is different in that her mother has Alzheimer’s and can be verbally abusive sometimes, and some of her verses deal with handling that.

I hope these are as helpful to you as they are to me. Do you have particular verses that help you in loving and ministering to others?

For more about caregiving, see:

Eldercare

(Sharing with Inspire Me Monday, Woman to Woman, Testimony Tuesdays, Tell His Story, Works For Me Wednesday, Thought-provoking Thursday)

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It’s been quite a while since I’ve been able to share interesting links found in my reading. Probably everyone was too busy to read just as I was too busy to gather them. 🙂 Now that we’re back in a regular routine, here is some good reading for your perusal if you have time:

This time of year, there’s a lot written about spending time in the Bible – starting or renewing the habit. These are all good:

Strategizing “Time in the Word” for a New Year. Jen describes the differences between reading plans, Bible studies, and topical studies and when you might want to choose one over the other.

Plan to Abide in God’s Word.

Why to Study the Bible.

7 Ways to Approach Your Bible in 2016.

Ten Check-up Questions For the New Year.

Serpents, Seeds, and a Savior. Rich thoughts from Nancy DeMoss Wolgemuth on Genesis 2-3 from the perspective of a newlywed.

Gluttony: Gospel Reflections for Foodies and Comfort Eaters. Very helpful way of looking at it.

Caring For Aging Parents.

Why Women Should Study Church History.

The Middle Years: There’s Good News, Too!

5 Ways You Are Ruining Your Child’s Life.

How to Make Reading Resolutions.

A couple about writing:

11 Ways to Write Better.

How to Outline a Novel (Even If You’re Not an Outliner)

Finally, for a smile or two -my son showed me this first video of a raccoon trying to wash cotton candy. It took him a few tries to figure it out. 🙂

http://imgur.com/zH0Tvcn

And last of all, Susanne posted this yesterday:

Happy Saturday!

Book Review: Caregivers’ Devotions To Go

caregivers devotionsI got Caregiver Devotions To Go by Gigi Devine Murfitt from a Kindle sale a few years ago, and it has been sadly languishing on my Kindle app since then. I just recently rediscovered it and thought it was the perfect time to read it.

Gigi writes from the perspective of a daughter who helped her “widowed and disabled mother as she cared for her ten children” and then later cared for her mom when she was older, and then as a mother of a son with special needs. In some cases her definition of a caregiver broadens to include teachers, firefighters, etc. She shares here 30+ short (a little over 2 pages each on my device) devotional thoughts on various aspects of caregiving. Each one includes a Scripture verse, several paragraphs, a prayer, and activity ideas.

The devotionals cover a variety of topics, from acceptance to finding strength to showing love to our need and the provision for forgiveness when we fail. One of my favorites was when a friend wrote a letter to Gigi’s son after he was born with arms only 3 inches long, saying that he was as fearfully and wonderfully made as anyone else and that she was looking forward to see how God worked in and through him. Another was when her sister, after finding her mother in “a five pound, urine soaked diaper” at her nursing home more than once, even after speaking to the nurses about it, asked if she could visit with the staff. She thought she was just going to have a meeting with the nurses and aides who cared for her mom specifically, but she found when she arrived that she was the guest speaker for a staff meeting of about 60 people. She talked about what residents gave up to live in the nursing home – homes, pets, most possessions, autonomy, etc., and emphasized their need for compassion, pointing out that “for many of them, the caregivers were the only contact they had on a daily basis. A touch, a smile, a gentle response, an ‘I care about you’ attitude could make a bleak day brighter.” She asked them to treat the residents as they would want their own family members taken care of. When my mother-in-law was in various facilities, I often wished I could address her caregivers, but I never thought to ask. My husband did speak to the person in charge more than once, but I would have loved to gently urge everyone to remember that these are people they are dealing with, not just tasks, and to treat them as they themselves would want to be treated in the same situation. Now I find myself needing to be reminded of the same truths.

Though not every entry applied to my situation, and though I would differ with the author on a couple of issues, overall I benefited much from this book, and I think any caregiver would as well.

(This review will also be linked to Semicolon‘s Saturday Review of Books.)