All of us find ourselves dealing with difficult people from time to time. In fact, I’ve noticed that once in awhile, I am the difficult person with whom someone close to me has to cope!
A few days ago I received a prayer request from a friend who has the daily challenge of interacting with a difficult person of her own. As I prayed, the story of Jonah came to mind; and I remembered the strange way the Lord made provision for him: “But the LORD provided a great fish to swallow Jonah, and Jonah was inside the fish three days and three nights” (Jonah 1:17).
I wrote an email to my friend saying, “Being confined by any situation not of our choosing can be viewed as a provision from the Lord. God has gifted you through your difficult person. As you've learned to cope with her, you’ve gained virtues of patience, long-suffering, and forbearance.”
As I proofed the email I’d written to my friend, I realized that my words could be applied to a caregiver’s relationship with his/her care recipient. Taking care of someone who has dementia is certainly confining emotionally and usually physically as well. To think of my caregiving duties as a situation the Lord has provided for me reminds me there is no circumstance He has not designed. This is a liberating thought that gives freedom from the misconception that “If only this situation was different, I could be happy.”
If you have been provided a difficult caregiving situation, I hope you are encouraged today by the thought that God plans blessing for you and not harm through the circumstances that seem so confining now. Jonah didn’t stay forever in the belly of that fish! For caregivers, the knowledge that caregiving responsibilities will someday come to an end is bittersweet, because when that day of freedom arrives it will mean that our loved one has departed. God is with through these confining days of caregiving, and He will be with us when this time is done.
Wednesday, December 22, 2010
Wednesday, December 15, 2010
An Encouraging Word for Christian Caregivers
The loneliness of caregiving is intensified by the fact that we tend to think something is wrong when we are in relationship with other human beings but still have a sense of isolation, of not being understood or truly seen; of being alone.
We need to accept that as long as we are at home in the flesh, we are away from Christ; and that this terrible homesickness and longing we feel can’t be satisfied by other human beings. We must accept as a fact of earth-bound life that we will feel lonely; that the only satisfaction for our heart’s needs is in our Savior’s face. We can access Him now, through the Spirit. Things that feed the flesh tend to weaken our perception of Him. Once we recognize this it becomes easier to discipline the flesh.
It’s difficult to accept that happiness--true, complete, lasting happiness--does not exist for us apart from Jesus. We can begin to participate in that happiness now, but flesh wars with the Spirit; and not until we leave the flesh behind will we be truly at home. Accepting this doesn’t have to do with spiritual maturity so much as it has to do with faith and the willingness to accept that on this planet, we are never going to have things just like we want them. Perfection can be found only in the Lord; it does not exist in the material world.
This acceptance is necessary before we can truly let other human beings off the hook for satisfying that aching emptiness within our hearts.
When circumstances require us to assume caregiving responsibilities for a fellow human being, there is a spiritual and emotional transition that must occur. We must come to understand that mature Christian love is Christ’s love, and Christ’s love makes no demands based on personal need. His only demand of us is that we become perfect as He is perfect. We can be perfected because we are perfectly loved by the Lord. That process will not be completed until Heaven, but it can begin now.
When I was a little girl, a dear friend of my mother's, Ruby Roberts, lost her husband to cancer. I was around eight-years-old and could not fathom living alone, as Ruby was doing following her husband's death. I asked her, "Are you lonely?"
She smiled and said, "I am alone, but never lonely. Jesus is with me."
As Christian caregivers I pray that we are able to participate in Christ's presence to the degree that we can say with Ruby, "I may be alone, but I am never lonely."
We need to accept that as long as we are at home in the flesh, we are away from Christ; and that this terrible homesickness and longing we feel can’t be satisfied by other human beings. We must accept as a fact of earth-bound life that we will feel lonely; that the only satisfaction for our heart’s needs is in our Savior’s face. We can access Him now, through the Spirit. Things that feed the flesh tend to weaken our perception of Him. Once we recognize this it becomes easier to discipline the flesh.
It’s difficult to accept that happiness--true, complete, lasting happiness--does not exist for us apart from Jesus. We can begin to participate in that happiness now, but flesh wars with the Spirit; and not until we leave the flesh behind will we be truly at home. Accepting this doesn’t have to do with spiritual maturity so much as it has to do with faith and the willingness to accept that on this planet, we are never going to have things just like we want them. Perfection can be found only in the Lord; it does not exist in the material world.
This acceptance is necessary before we can truly let other human beings off the hook for satisfying that aching emptiness within our hearts.
When circumstances require us to assume caregiving responsibilities for a fellow human being, there is a spiritual and emotional transition that must occur. We must come to understand that mature Christian love is Christ’s love, and Christ’s love makes no demands based on personal need. His only demand of us is that we become perfect as He is perfect. We can be perfected because we are perfectly loved by the Lord. That process will not be completed until Heaven, but it can begin now.
When I was a little girl, a dear friend of my mother's, Ruby Roberts, lost her husband to cancer. I was around eight-years-old and could not fathom living alone, as Ruby was doing following her husband's death. I asked her, "Are you lonely?"
She smiled and said, "I am alone, but never lonely. Jesus is with me."
As Christian caregivers I pray that we are able to participate in Christ's presence to the degree that we can say with Ruby, "I may be alone, but I am never lonely."
Saturday, December 4, 2010
Name Game
An occupational hazard of taking care of a loved one who has dementia is fear. Almost every day some minor memory glitch finds me grappling with a low level anxiety that doesn't ever completely recede. I'm afraid that what has happened to my mom will happen to me.
I've never been great with names, which is unfortunate, because I've been a teacher for 30 years; and an almost universal pet peeve of students and former students is running into a teacher who does not remember their name.
Wal-mart is a treacherous place under the best of circumstances, but during the Christmas season everything that oppresses me about the store is multiplied about tenfold. Crowded aisles along with a ridiculous over-abundance of color, lights, and purchasing choices all combine to cause me sensory overload. I tend to retreat inside myself to the point that I might not immediately recognize my own children if I met them cart to cart in the produce section. Unfortunately, it is when I am rushing through the aisles in my Wal-mart induced haze that I am most likely to meet a former student.
Teachers are not helped when parents choose to bestow similar names upon their offspring, who almost always resemble one another. I think of three little boys in our community who are named Tyler, Timothy, and Trent*. These three little T's do not only have names that begin the same; their resemblance to one another is strong. I have actually prayed not to confuse these guys' names, only to find myself calling Tyler, Trent; and then running through each name in succession until the child in question (often with an air of resigned disgust) corrects me.
Last night at Wal-mart a tall, rangy young man with a full beard and long, blond hair asked the dreaded question, "Mrs. Born, do you remember me?"
I actually thought that I did. "David?!" I said.
"Close," he responded. I'm his brother, Daniel. We do look alike. I chatted pleasantly with him for a few minutes and went on my way. I actually felt somewhat self-congratulatory that on a moment's notice I'd managed to find a family resemblance in the 20-year-old I'd last seen when he was six.
In the very next aisle a beautiful young woman approached me. "You probably don't remember me," she said.
Sherie???" I said.
"No, Sheila," she replied. Sherie is my sister and she's over in the clothing department if you want to say "Hi."
In retrospect I don't know whether to feel happy that I was able to remember the correct families or sad that I did not instantly recall the right name for each of those precious young people who greeted me last night. Perhaps I'd best choose to accentuate the positive.
One strong positive has just occurred to me; after approximately 15 years (and 15 pounds or so) they were still able to recognize me!
My former students each possess a portion of my heart, and I hate when I don't recognize them or fail to call them accurately by name. Once again I fall back on God's grace as today I say a prayer for Sheila (and her sister Sherie) and Daniel (and his brother David).
Scripture: "...though she may forget, I will not forget you!" (Isaiah 49:15).
*The children and their same first letter names are real, names are changed.
I've never been great with names, which is unfortunate, because I've been a teacher for 30 years; and an almost universal pet peeve of students and former students is running into a teacher who does not remember their name.
Wal-mart is a treacherous place under the best of circumstances, but during the Christmas season everything that oppresses me about the store is multiplied about tenfold. Crowded aisles along with a ridiculous over-abundance of color, lights, and purchasing choices all combine to cause me sensory overload. I tend to retreat inside myself to the point that I might not immediately recognize my own children if I met them cart to cart in the produce section. Unfortunately, it is when I am rushing through the aisles in my Wal-mart induced haze that I am most likely to meet a former student.
Teachers are not helped when parents choose to bestow similar names upon their offspring, who almost always resemble one another. I think of three little boys in our community who are named Tyler, Timothy, and Trent*. These three little T's do not only have names that begin the same; their resemblance to one another is strong. I have actually prayed not to confuse these guys' names, only to find myself calling Tyler, Trent; and then running through each name in succession until the child in question (often with an air of resigned disgust) corrects me.
Last night at Wal-mart a tall, rangy young man with a full beard and long, blond hair asked the dreaded question, "Mrs. Born, do you remember me?"
I actually thought that I did. "David?!" I said.
"Close," he responded. I'm his brother, Daniel. We do look alike. I chatted pleasantly with him for a few minutes and went on my way. I actually felt somewhat self-congratulatory that on a moment's notice I'd managed to find a family resemblance in the 20-year-old I'd last seen when he was six.
In the very next aisle a beautiful young woman approached me. "You probably don't remember me," she said.
Sherie???" I said.
"No, Sheila," she replied. Sherie is my sister and she's over in the clothing department if you want to say "Hi."
In retrospect I don't know whether to feel happy that I was able to remember the correct families or sad that I did not instantly recall the right name for each of those precious young people who greeted me last night. Perhaps I'd best choose to accentuate the positive.
One strong positive has just occurred to me; after approximately 15 years (and 15 pounds or so) they were still able to recognize me!
My former students each possess a portion of my heart, and I hate when I don't recognize them or fail to call them accurately by name. Once again I fall back on God's grace as today I say a prayer for Sheila (and her sister Sherie) and Daniel (and his brother David).
Scripture: "...though she may forget, I will not forget you!" (Isaiah 49:15).
*The children and their same first letter names are real, names are changed.
Wednesday, December 1, 2010
Alzheimer's is Bad, but God is Good
Years ago I saw a TV show that contained a scene I've not forgotten, although I have no idea now of the plot surrounding the imagery that's stuck with me over time. An infant was lying inside a special containment area because the child had to be protected from environmental dangers. When medical personnel needed to minister to the child, they placed their hands into long gloves through specially designed portals in the clear box that held the sleeping infant. The baby was completely shielded from bacteria and allergens that might be in the room. Oxygen and food were somehow given through sterile and sealed portals such as the ones that held the gloves.
That scene has been in my mind today as I think about the saying, "Everything comes to us by God's hand."
Sometimes, people who have been terribly hurt by life events take exception to this and similar statements. I don't blame them. If I believed that God had afflicted my mom with Alzheimer's as a sort of blessing in disguise, I would certainly object to the idea that life events that cost us terrible sorrow are actually good in some cosmic way we can't yet see.
In my early days as a caregiver, I struggled with the facts of my mother's suffering and the burdens I carry because of her Alzheimer's disease. I cried out in prayer and sought help through Scripture, aware of the Holy Spirit's comfort and help. In chapter ten of my book, My Mom Has Alzheimer's: Inspiration and Help for Caregivers, I recorded the guidance God graciously provided in response to those prayers:
Alzheimer's is not in any way a good thing, but the Lord has blessed us through it. The blessings have come by the Lord's protective power and not from the disease itself.
That scene has been in my mind today as I think about the saying, "Everything comes to us by God's hand."
Sometimes, people who have been terribly hurt by life events take exception to this and similar statements. I don't blame them. If I believed that God had afflicted my mom with Alzheimer's as a sort of blessing in disguise, I would certainly object to the idea that life events that cost us terrible sorrow are actually good in some cosmic way we can't yet see.
In my early days as a caregiver, I struggled with the facts of my mother's suffering and the burdens I carry because of her Alzheimer's disease. I cried out in prayer and sought help through Scripture, aware of the Holy Spirit's comfort and help. In chapter ten of my book, My Mom Has Alzheimer's: Inspiration and Help for Caregivers, I recorded the guidance God graciously provided in response to those prayers:
God does not willingly bring grief or suffering (See Lamentations 3:33;) His will flows over all that is grievous and changes darkness to light (See Psalm 18:28;) all things are incorporated into and transformed by His perfect will (See Romans 8:28;) where time and eternity touch, His will is done on earth as in Heaven (See Matthew 6:10;) we can’t yet perceive what we will one day see clearly because we walk by faith and not by sight. (See 1 Corinthians 13:12.)We are like that infant in the scene I described at the beginning of this post. No outside influence touches us that is not covered by the protection of God's Hand.
Alzheimer's is not in any way a good thing, but the Lord has blessed us through it. The blessings have come by the Lord's protective power and not from the disease itself.
Monday, November 29, 2010
Good Medicine for a Weary Caregiver
 |
| This family of four penguins graced the tree skirt and child's rocker next to last year's Christmas tree. |
This morning I've remembered that God’s “foolishness” is wiser than the best wisdom of human beings. God is sometimes whimsical—how else do you explain penguins? The Lord’s playfulness is never heavy-handed or awkward, as when an old college professor makes an attempt at humor that he does not truly feel; but is as delicate as the perfect choreography behind the spring dance of hundreds of dragonflies in the air above my front yard. A book could be written about the “foolishness” of God, and it would be a beautiful book.
Last year at Christmastime, I purchased some appealingly funny, nearly life-sized penguins and placed them around my Christmas tree. This afternoon I think I'll put forth the effort required to dig through the back of the storage area beneath the eaves of our old house to find where I've stashed those penguins.
I'm praying for each of my readers right now: may the sweet relief of humor lighten your caregiving burden today.
Scripture: "For the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength" (1 Corinthians 1:35).
Friday, November 19, 2010
Caregiver's Dilemma: Coping With Apathy in Dementia Patients
Note: the following entry is my December column for our community's local, online newsletter, thus the difference in tone from my usual blog entries.
On Easter morning, 2004, I slid into my customary pew at church with several minutes to spare before services were scheduled to begin. I noticed that my mother’s space at the end of the row was empty, and felt a glimmer of worry. She was a stickler for punctuality and never missed church. She taught me always to arrive early, especially for holiday services.
I excused myself and called Mom. “Oh, I just decided to stay home today,” she said. When I reacted with shock, she complied with my wishes and came to church, arriving twenty minutes late. This incident was one of many that let me know something was wrong with my mom.
Apathy is a common side effect of dementia, and is sometimes the first symptom noted. Dementia patients may display indifference regarding schedules in combination with an apparent lack of emotion toward concerned loved ones who object to their behaviors. Symptoms of apathy probably cause more conflict between caregivers and patients than any other early warning sign of dementia. A caregiver may have an intellectual understanding that the care recipient should not be held accountable for disease related responses, but it is difficult to transfer that “in the head” understanding to the heart. The tendency is to react to the loved one based on the relationship that existed before dementia occurred rather than to respond from a caregiver’s perspective.
Apathy may be a result of the physical damage that occurs as the characteristic plaques and tangles of Alzheimer’s disease wreak havoc in the brain, but there is a psychological and emotional basis as well. Forgetfulness and confusion cause dementia patients to lose confidence in the ability to successfully perform everyday tasks. Repeated failures can result in a reluctance to make the effort to try. People who suffer dementia often ask others to carry out tasks they are still physically able to complete, a behavior that in the general population might be labeled lazy or self-centered. However, for the dementia patient, requesting help is actually a viable coping mechanism that helps to compensate for failing memory.
When I respond to my mother’s requests with irritation, I take from her the dignity of retaining a measure of control over her environment. She has learned a new way to get what she needs—she asks!
It is only in recent years that Alzheimer’s disease has been widely recognized and diagnosed. There are doubtless a number of readers who remember a parent or grandparent becoming stubborn or demanding, and only in retrospect have understood that Grandpa’s “hardening of the arteries” and Grandma’s stubborn streak were dementia related. It is my hope that our current, more accurate understanding of the physical basis for the behavioral changes of dementia will ease the sad memories some of us have of the puzzling or hurtful behaviors a loved one exhibited toward the end of life. When my own mother goes home to be with the Lord, I pray to remember her as the vital and loving person she was before dementia robbed her of the ability to think clearly and respond appropriately.
On Easter morning, 2004, I slid into my customary pew at church with several minutes to spare before services were scheduled to begin. I noticed that my mother’s space at the end of the row was empty, and felt a glimmer of worry. She was a stickler for punctuality and never missed church. She taught me always to arrive early, especially for holiday services.
I excused myself and called Mom. “Oh, I just decided to stay home today,” she said. When I reacted with shock, she complied with my wishes and came to church, arriving twenty minutes late. This incident was one of many that let me know something was wrong with my mom.
Apathy is a common side effect of dementia, and is sometimes the first symptom noted. Dementia patients may display indifference regarding schedules in combination with an apparent lack of emotion toward concerned loved ones who object to their behaviors. Symptoms of apathy probably cause more conflict between caregivers and patients than any other early warning sign of dementia. A caregiver may have an intellectual understanding that the care recipient should not be held accountable for disease related responses, but it is difficult to transfer that “in the head” understanding to the heart. The tendency is to react to the loved one based on the relationship that existed before dementia occurred rather than to respond from a caregiver’s perspective.
Apathy may be a result of the physical damage that occurs as the characteristic plaques and tangles of Alzheimer’s disease wreak havoc in the brain, but there is a psychological and emotional basis as well. Forgetfulness and confusion cause dementia patients to lose confidence in the ability to successfully perform everyday tasks. Repeated failures can result in a reluctance to make the effort to try. People who suffer dementia often ask others to carry out tasks they are still physically able to complete, a behavior that in the general population might be labeled lazy or self-centered. However, for the dementia patient, requesting help is actually a viable coping mechanism that helps to compensate for failing memory.
When I respond to my mother’s requests with irritation, I take from her the dignity of retaining a measure of control over her environment. She has learned a new way to get what she needs—she asks!
It is only in recent years that Alzheimer’s disease has been widely recognized and diagnosed. There are doubtless a number of readers who remember a parent or grandparent becoming stubborn or demanding, and only in retrospect have understood that Grandpa’s “hardening of the arteries” and Grandma’s stubborn streak were dementia related. It is my hope that our current, more accurate understanding of the physical basis for the behavioral changes of dementia will ease the sad memories some of us have of the puzzling or hurtful behaviors a loved one exhibited toward the end of life. When my own mother goes home to be with the Lord, I pray to remember her as the vital and loving person she was before dementia robbed her of the ability to think clearly and respond appropriately.
Wednesday, November 10, 2010
Trusting
A friend's mother died earlier this week at age 85, after a ten year struggle with Alzheimer's disease.
My mother is 86.
This morning I went into Mom's room to perform my usual morning chores; I opened the shades, changed the date on her whiteboard, and filled the carafe with freshly brewed coffee. I used the TV remote to select the "easy listening" music station, and adjusted the thermostat to Mom's preferred 72 degree level. With the changing season and fluctuating temperatures, it is difficult to keep the room temperature just right; and it doesn't occur to Mom to put on a sweater if she is cold or to open the window if she is too warm. Furthermore, it is an effect of her Alzheimer's to make her believe that however she feels in the moment she is in is how it always is. So if she is too warm (or too cold) she feels exasperated and upset because she thinks this discomfort is her usual state, and not a seasonal anomaly.
Today things were unusually quiet in Mom's bedroom. I usually hear her on the baby monitor as she talks to the cat, or she will call out a greeting when I come into her room. This morning I did not hear so much as a cough.
You may think this odd, but I did not go into her bedroom to check on her. I left her apartment, came upstairs into my part of the house, and began making my bed and straightening my room. It was a blatant denial of the possibility that Mom might have passed away in the night. All the while the baby monitor remained silent.
In the corner of my bedroom is a basket filled with supplies I've prepared for my mom's funeral. I compiled these items at the time that we bought her prepaid burial plan five years ago, when I was asked to write her obituary for our funeral director to keep on file. He said that at the time of a death, people often are not thinking clearly, and it is good to give this necessary task thought and prayer ahead of time. And so, being forced to face facts, I went ahead and gathered items that I thought would make a nice service for my mother. There is a slide show of photos of her life, a collection of picture stands that will hold some of her oil paintings on display, a box of the pink, engraved cards that she included with each picture sold at the arts and crafts shows she attended, and a few of her journals with meaningful quotes highlighted.
Of course, as I cleaned my bedroom I tripped over this basket. "You can run but you can't hide," I thought ruefully.
It is human nature to seek escapism from things that are unpleasant. It is an ongoing challenge to balance the grief of losing my mother with the need to enjoy her in the days that remain.
Awhile later I did open the door to Mom's room and found her enjoying coffee and toast. She greeted me with her usual smile and so, for today, we have one another still.
Prayer: Lord grant me grace to enjoy my mother while she is here. Grant me freedom both from fear of losing her and from fear of being increasingly burdened by the care she may require. I place my faith in You, Lord. I know that You will support and sustain me through joy and sorrow, and through all the days in between. Amen.
Scripture: Blessed are those whose strength is in you, whose hearts are set on pilgrimage. As they pass through the Valley of Baka (bitterness) they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion (Psalm 84:5-7).
My mother is 86.
This morning I went into Mom's room to perform my usual morning chores; I opened the shades, changed the date on her whiteboard, and filled the carafe with freshly brewed coffee. I used the TV remote to select the "easy listening" music station, and adjusted the thermostat to Mom's preferred 72 degree level. With the changing season and fluctuating temperatures, it is difficult to keep the room temperature just right; and it doesn't occur to Mom to put on a sweater if she is cold or to open the window if she is too warm. Furthermore, it is an effect of her Alzheimer's to make her believe that however she feels in the moment she is in is how it always is. So if she is too warm (or too cold) she feels exasperated and upset because she thinks this discomfort is her usual state, and not a seasonal anomaly.
Today things were unusually quiet in Mom's bedroom. I usually hear her on the baby monitor as she talks to the cat, or she will call out a greeting when I come into her room. This morning I did not hear so much as a cough.
You may think this odd, but I did not go into her bedroom to check on her. I left her apartment, came upstairs into my part of the house, and began making my bed and straightening my room. It was a blatant denial of the possibility that Mom might have passed away in the night. All the while the baby monitor remained silent.
In the corner of my bedroom is a basket filled with supplies I've prepared for my mom's funeral. I compiled these items at the time that we bought her prepaid burial plan five years ago, when I was asked to write her obituary for our funeral director to keep on file. He said that at the time of a death, people often are not thinking clearly, and it is good to give this necessary task thought and prayer ahead of time. And so, being forced to face facts, I went ahead and gathered items that I thought would make a nice service for my mother. There is a slide show of photos of her life, a collection of picture stands that will hold some of her oil paintings on display, a box of the pink, engraved cards that she included with each picture sold at the arts and crafts shows she attended, and a few of her journals with meaningful quotes highlighted.
Of course, as I cleaned my bedroom I tripped over this basket. "You can run but you can't hide," I thought ruefully.
It is human nature to seek escapism from things that are unpleasant. It is an ongoing challenge to balance the grief of losing my mother with the need to enjoy her in the days that remain.
Awhile later I did open the door to Mom's room and found her enjoying coffee and toast. She greeted me with her usual smile and so, for today, we have one another still.
Prayer: Lord grant me grace to enjoy my mother while she is here. Grant me freedom both from fear of losing her and from fear of being increasingly burdened by the care she may require. I place my faith in You, Lord. I know that You will support and sustain me through joy and sorrow, and through all the days in between. Amen.
Scripture: Blessed are those whose strength is in you, whose hearts are set on pilgrimage. As they pass through the Valley of Baka (bitterness) they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion (Psalm 84:5-7).
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