Little moments of shared laughter go a long way toward making the burdens of dementia endurable for both caregiver and patient. At the heart of the grief of Alzheimer's disease there is a little glimmer of joy springing from the fact that no matter what state our loved ones are in, at least they are still with us. Shared laughter brings that joy to light even if just for a moment.
I love to laugh with my mom. Before she was sick we shared the same sense of humor, and when that surfaces now I feel such gratitude that I still have her with me. Of course just behind that emotion there are tears because she's obviously in the process of leaving me; but for today she's here, and there are opportunities to connect with her still.
On a rainy afternoon in 1980, my mother and I sat in the waiting room outside my doctor's office. I was expecting my first child, and that day we shared the waiting room with a half dozen other women, all of whom were in varying stages of pregnancy. We were not a talkative group and there was silence in the room when a UPS truck pulled up. The driver sprinted to the door, stuck his head into the room and shouted, "Delivery!" He then focused on the startled faces of the group of pregnant women, blushed, dropped his package on the floor, and fled. Mom and I both burst into laughter, and when we realized we were the only ones laughing, the joke became funnier still. I'm not sure why the other pregnant ladies didn't connect the word "delivery" with the imminent arrival of their own special packages, but Mom and I sure did. And why didn't anyone else think the UPS man's obvious embarrassment was hilarious?
Move forward nearly thirty years to a hot July afternoon in 2009. Mom and I were being chauffeured to an appointment by my husband. He had taken an afternoon off from farming, which was a real sacrifice of love for him, and he was not in the best of humors. Mom and I both sensed this and were a little giggly--his taciturn face and abrupt answers to our lighthearted comments were not bringing out the best in us. Mom looked in the mirror and said, "My hair sure does look nice when I'm headed to the beauty shop to get it fixed."
"No, Mom, we're going to the eye doctor," I said.
Exasperated, my husband spoke slowly and clearly, "We are going to the dentist!"
Mom and I both laughed until we cried, as my husband shook his head in resignation. We were indeed headed to the dentist's office for Mom's six month checkup.
Sharing laughter with Mom reminds me of how blessed we are to be together still.
Scripture: "A happy heart is good medicine and a cheerful mind works healing..." (Proverbs 17:22 AMP).
Monday, July 27, 2009
Saturday, July 25, 2009
Patient/Caregiver Perspectives
My mother's journals reveal telling insights into how her mind does and does not function. Her journaling may give help to Alzheimer's caregivers whose loved ones are unable or are not inclined to put their thoughts into words. Here is an incident that occurred yesterday, first from my perspective as caregiver and then from Mom's perspective as patient:
Caregiver's perspective:
Yesterday I arranged a little lunch date for Mom, her respite care provider, and me. We ate pizza, chatted together, and Mom enjoyed the interaction. Later in the afternoon I brought Mom a snack of fresh fruit and graham crackers, and a couple of hours later I prepared and served her supper. In the evening I was tired, having shopped for groceries and prepared food for a busy weekend that includes company and a church dinner. I took Mom for a walk during which we chatted about the events of our day. I had returned to my part of the house to prepare her evening snack and sort her night meds when I heard her yelling. I went in and saw that she was was feeling neglected and irritated. "I just thought I'd let you know that whenever anyone can spend a little bit of time talking to me, I certainly would appreciate it," she said. I'm sure I displayed at least a touch of righteous anger. I told her I was busy and went out and shut the door. A few minutes later I brought her the snack and medicine and told her good night. I admit I feel the same anger once again as I write these words; a good portion of my day had been spent in acts of service for Mom and yet in the evening, she concluded that no one cared about her because she felt a stab of loneliness.
Patient's perspective (from Mom's journal entry):
I must have had a little brain glitch. Suddenly I felt need for companionship and conversation so I yelled, "Hello!" until someone came to the door. I told them what I wanted and they just stared at me a moment--turned and left.
An Alzheimer's patient loses the ability to utilize several sources of information simultaneously. Those of us whose minds are still functioning more or less normally don't realize how often we need to think about more than one aspect of a situation in order to draw an accurate conclusion. Furthermore, the dementia patient has lost confidence in his/her own ability to perform the simplest of tasks, but retains the ability to ask for help. Thus, the disease causes a cluster of symptoms that in the general population could justifiably be labeled "lazy" and "self-centered." It is up to the caregiver to recognize these behaviors as being clinical effects of the disease. When the only information the patient is able to draw upon comes from the present moment, then oftentimes those conclusions will be inaccurate.
I'm ashamed to say that in response to the situation I've shared above, I displayed irritation toward my mother. However, the curse of the forgetfulness of Alzheimer's also contains a hidden blessing, because when I returned to Mom's room a few minutes later armed with a snack and a cheerful attitude, all was well between us once again.
Scripture: "Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you" (Colossians 3:13).
Caregiver's perspective:
Yesterday I arranged a little lunch date for Mom, her respite care provider, and me. We ate pizza, chatted together, and Mom enjoyed the interaction. Later in the afternoon I brought Mom a snack of fresh fruit and graham crackers, and a couple of hours later I prepared and served her supper. In the evening I was tired, having shopped for groceries and prepared food for a busy weekend that includes company and a church dinner. I took Mom for a walk during which we chatted about the events of our day. I had returned to my part of the house to prepare her evening snack and sort her night meds when I heard her yelling. I went in and saw that she was was feeling neglected and irritated. "I just thought I'd let you know that whenever anyone can spend a little bit of time talking to me, I certainly would appreciate it," she said. I'm sure I displayed at least a touch of righteous anger. I told her I was busy and went out and shut the door. A few minutes later I brought her the snack and medicine and told her good night. I admit I feel the same anger once again as I write these words; a good portion of my day had been spent in acts of service for Mom and yet in the evening, she concluded that no one cared about her because she felt a stab of loneliness.
Patient's perspective (from Mom's journal entry):
I must have had a little brain glitch. Suddenly I felt need for companionship and conversation so I yelled, "Hello!" until someone came to the door. I told them what I wanted and they just stared at me a moment--turned and left.
An Alzheimer's patient loses the ability to utilize several sources of information simultaneously. Those of us whose minds are still functioning more or less normally don't realize how often we need to think about more than one aspect of a situation in order to draw an accurate conclusion. Furthermore, the dementia patient has lost confidence in his/her own ability to perform the simplest of tasks, but retains the ability to ask for help. Thus, the disease causes a cluster of symptoms that in the general population could justifiably be labeled "lazy" and "self-centered." It is up to the caregiver to recognize these behaviors as being clinical effects of the disease. When the only information the patient is able to draw upon comes from the present moment, then oftentimes those conclusions will be inaccurate.
I'm ashamed to say that in response to the situation I've shared above, I displayed irritation toward my mother. However, the curse of the forgetfulness of Alzheimer's also contains a hidden blessing, because when I returned to Mom's room a few minutes later armed with a snack and a cheerful attitude, all was well between us once again.
Scripture: "Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you" (Colossians 3:13).
Friday, July 17, 2009
Silver Linings
I try to look for the few silver linings to our Alzheimer's clouds. As Pa Ingalls said, "There's no great ill that doesn't bring some small good..."
Here's my latest:
I'm trying to do my Christmas shopping in July this year--a first ever for me. I ordered a beautifully painted sign for Mom that says, "Amazing Grace." When it came I was unable to keep from showing it to her, figuring I'd go ahead and put it up for her now and buy another gift for her to have in December. She loved the sign! She ooohed and aaaahhhed over it and we planned where to hang it. It was the most pleasant interchange we'd had for awhile. I took it back to my part of the house thinking I'd put it up later but didn't get it done. A few days later I took it in to Mom again, and, not remembering that she'd ever seen it before, she had the exact wonderful reaction! I loved seeing her loving it! A plan hatched in my brain--I can multiply the joy of gift giving by presenting this one gift every week or so until Mom wises up to me...and I can then wrap it up and give it to her for Christmas! Talk about getting my money's worth out of that gift...we both get to enjoy it so much more because of Mom's AD! Just a little joy multiplied, but there's my silver lining for the day.
I posted this story at the Caregiver's forum at the Alzheimer's Association's message boards, and one lady commented, "Truly the gift that keeps on giving! :)"
Scripture:
"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus" (1 Thessalonians 5:16-18).
Here's my latest:
I'm trying to do my Christmas shopping in July this year--a first ever for me. I ordered a beautifully painted sign for Mom that says, "Amazing Grace." When it came I was unable to keep from showing it to her, figuring I'd go ahead and put it up for her now and buy another gift for her to have in December. She loved the sign! She ooohed and aaaahhhed over it and we planned where to hang it. It was the most pleasant interchange we'd had for awhile. I took it back to my part of the house thinking I'd put it up later but didn't get it done. A few days later I took it in to Mom again, and, not remembering that she'd ever seen it before, she had the exact wonderful reaction! I loved seeing her loving it! A plan hatched in my brain--I can multiply the joy of gift giving by presenting this one gift every week or so until Mom wises up to me...and I can then wrap it up and give it to her for Christmas! Talk about getting my money's worth out of that gift...we both get to enjoy it so much more because of Mom's AD! Just a little joy multiplied, but there's my silver lining for the day.
I posted this story at the Caregiver's forum at the Alzheimer's Association's message boards, and one lady commented, "Truly the gift that keeps on giving! :)"
Scripture:
"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus" (1 Thessalonians 5:16-18).
Sunday, July 5, 2009
The Importance of Intercessors
Those acquainted with grief are aware of how it can lie dormant for a period of months or years only to come surging to the surface at the most inopportune times. This sort of grief tends to creep insidiously to the surface, gaining a sure foothold before we are aware of its presence.
In the midst of a frantically busy holiday weekend, I was nearly overwhelmed with grief over loss of the family traditions that died with my father's physical death and my mother's Alzheimer's induced inability to remember. How could I have forgotten that the fourth is the holiday that I miss having parents the most; how could I have allowed that terrible sense of loss to advance to flood stage before awareness of it reached my conscious mind? Of the catalysts that open the gates for this type of grief, a dear sister in Christ says it's as though..."we’ve been swept onto the Grief Express, bulleted back in time and soul to those first days..." (Melody's blog).
I was doing a fair job of keeping the grief waters dammed behind a determined smile and a busy schedule, when I walked into my mother's room. In a high pitched, little girl voice, she was singing "Let Me Call You Sweetheart," a song she's often told me was sung to her by her father when she was small. I felt her terrible loss of no longer being a little girl whose daddy adores her, and I turned and literally ran from the room. The pathos of my mother's situation had broken the barriers that had been keeping my own sorrows at bay. When I came to myself, I was clutching the kitchen counter, drawing in deep breaths, knowing my blood pressure was too high. I knew I could not cope any longer with the circumstances of my life and I felt desperate to escape. I was actually thinking I'd just write a note, pack a bag, and go to a motel for the weekend. I pulled out my phone and texted three friends, asking for prayer. Almost instantly my body relaxed, my emotions calmed, my thinking cleared. Next moment I received replies from my friends assuring me that I was being lifted to the Lord in prayer.
The remainder of the weekend was not easy, but I was strengthened to bear the weight of the responsibilities I needed to fulfill, and the grief receded. There is no doubt at all in my mind that this ability to cope came as a direct result of the intercession of my faithful friends who know the power of prayer.
Today I emailed the friends who prayed for me and closed with these words: Thanks be to God through Jesus Christ our Lord that we have one another. Thanks be to God for Jesus and His availing Blood, for His forgiveness, for His grace, for His mercy and
help. I praise Him.
Scripture: "Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective" (James 5:16).
In the midst of a frantically busy holiday weekend, I was nearly overwhelmed with grief over loss of the family traditions that died with my father's physical death and my mother's Alzheimer's induced inability to remember. How could I have forgotten that the fourth is the holiday that I miss having parents the most; how could I have allowed that terrible sense of loss to advance to flood stage before awareness of it reached my conscious mind? Of the catalysts that open the gates for this type of grief, a dear sister in Christ says it's as though..."we’ve been swept onto the Grief Express, bulleted back in time and soul to those first days..." (Melody's blog).
I was doing a fair job of keeping the grief waters dammed behind a determined smile and a busy schedule, when I walked into my mother's room. In a high pitched, little girl voice, she was singing "Let Me Call You Sweetheart," a song she's often told me was sung to her by her father when she was small. I felt her terrible loss of no longer being a little girl whose daddy adores her, and I turned and literally ran from the room. The pathos of my mother's situation had broken the barriers that had been keeping my own sorrows at bay. When I came to myself, I was clutching the kitchen counter, drawing in deep breaths, knowing my blood pressure was too high. I knew I could not cope any longer with the circumstances of my life and I felt desperate to escape. I was actually thinking I'd just write a note, pack a bag, and go to a motel for the weekend. I pulled out my phone and texted three friends, asking for prayer. Almost instantly my body relaxed, my emotions calmed, my thinking cleared. Next moment I received replies from my friends assuring me that I was being lifted to the Lord in prayer.
The remainder of the weekend was not easy, but I was strengthened to bear the weight of the responsibilities I needed to fulfill, and the grief receded. There is no doubt at all in my mind that this ability to cope came as a direct result of the intercession of my faithful friends who know the power of prayer.
Today I emailed the friends who prayed for me and closed with these words: Thanks be to God through Jesus Christ our Lord that we have one another. Thanks be to God for Jesus and His availing Blood, for His forgiveness, for His grace, for His mercy and
help. I praise Him.
Scripture: "Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective" (James 5:16).
Saturday, June 27, 2009
Difficulties
Perhaps I don't write enough about the difficult aspects of caregiving.
With God's guidance I've set up rules for myself to follow regarding anything I write about Mom. First of all I must honor her as my mother. The Lord has made it clear to me that the strong must serve the weak, and my mother is weakened by disease (see Romans 15:1). Jesus washed feet and didn't respond to abusive words; that's because He knew His own strength. His rule was that He was governed by God's will and God's love, and this rule must govern me lest I fall into disobedience to the most Holy God.
However, other caregivers might surmise there is nothing for them to gain from reading about an experience that's all sunshine and roses as compared to their own difficult journeys. And, since God's power is made perfect in weakness, I won't hold back from writing some humiliating truths about my own weakness today.
Here is my confession: In five years of caregiving, I have never adapted to the task of bathing my mother. She is in stage 5 of Alzheimer's disease with just a few beginning characteristics of stage 6 (click here for stages of Alzheimer's disease from the Alzheimer's Association). And so, if I lay out washcloths, soap, and clothing; she is still able to wash and dress on her own each day. Based on her behavior when I help her shower, I think she probably errs on the side of repeating behaviors (such as washing her face several times) rather than omitting them altogether, and so she is very clean.
However, she is unable to shower by herself, and so Saturday is bath day. Using words Ma Ingalls might have uttered, I playfully tell Mom, "You've got to go in all over at least once a week. Anything less is just not what decent folks would do."
I dread bath day, and in five years my angst has not decreased at all. In fact, in some ways it's gotten worse. I have always had a sensitive nose and a stomach that responds to my emotions, but the past few weeks the merest whiff of any normal body odors not my own has caused my stomach to churn. Last week on bath day I became so nauseated that I left my mother perched on the shower seat and fled from the room to phone a friend to pray for me. The fact that I was almost immediately better when she began to pray reveals that this is a spiritual battle. This week in the middle of the procedures, I sent a panicked text message to my daughter for prayer because I had become nauseated and emotionally upset. My knees were weak and actually buckled at one point, causing me to lose my balance. I feel ridiculous confessing all this.
Why don't I find someone to help me, you ask? My Mom does not yet qualify for Medicaid and I was quoted a price of nearly $150 when I attempted to find someone to hire to help . But beyond the expense is the fact that the thought of hiring a stranger to bathe Mom horrifies me. I understand her disease and her responses, I know her, and I love her. For the most part, I've learned to respond in love when she snaps at me out of frustration or weariness. If she were rude to a stranger during the bathing process when she is so vulnerable, what would that person's response be? At the very least most people in the world would respond in kind. I hate the thought of her being cowed into submission by someone unfamiliar to her. I feel so protective of her poor old body. While Mom is aware of who I am and still feels modest or afraid around strangers, I believe that this bathing ordeal is an anointed task that I am to perform. It's my job.
The Lord has shown me how to cope effectively. When I have an intercessor I am able to proceed as though I were a stronger person than I am.
The point of this entry today is the importance of humbling oneself to ask for prayer. If a caregiving task is difficult or even if it is abhorrent; this doesn't mean that we as caregivers need to be excused from the unpleasant task. We can ask God to for strength. We can ask friends to pray.
Scripture: "Dear brothers and sisters, pray for us" (1 Thessalonians 5:25, New Living Translation).
With God's guidance I've set up rules for myself to follow regarding anything I write about Mom. First of all I must honor her as my mother. The Lord has made it clear to me that the strong must serve the weak, and my mother is weakened by disease (see Romans 15:1). Jesus washed feet and didn't respond to abusive words; that's because He knew His own strength. His rule was that He was governed by God's will and God's love, and this rule must govern me lest I fall into disobedience to the most Holy God.
However, other caregivers might surmise there is nothing for them to gain from reading about an experience that's all sunshine and roses as compared to their own difficult journeys. And, since God's power is made perfect in weakness, I won't hold back from writing some humiliating truths about my own weakness today.
Here is my confession: In five years of caregiving, I have never adapted to the task of bathing my mother. She is in stage 5 of Alzheimer's disease with just a few beginning characteristics of stage 6 (click here for stages of Alzheimer's disease from the Alzheimer's Association). And so, if I lay out washcloths, soap, and clothing; she is still able to wash and dress on her own each day. Based on her behavior when I help her shower, I think she probably errs on the side of repeating behaviors (such as washing her face several times) rather than omitting them altogether, and so she is very clean.
However, she is unable to shower by herself, and so Saturday is bath day. Using words Ma Ingalls might have uttered, I playfully tell Mom, "You've got to go in all over at least once a week. Anything less is just not what decent folks would do."
I dread bath day, and in five years my angst has not decreased at all. In fact, in some ways it's gotten worse. I have always had a sensitive nose and a stomach that responds to my emotions, but the past few weeks the merest whiff of any normal body odors not my own has caused my stomach to churn. Last week on bath day I became so nauseated that I left my mother perched on the shower seat and fled from the room to phone a friend to pray for me. The fact that I was almost immediately better when she began to pray reveals that this is a spiritual battle. This week in the middle of the procedures, I sent a panicked text message to my daughter for prayer because I had become nauseated and emotionally upset. My knees were weak and actually buckled at one point, causing me to lose my balance. I feel ridiculous confessing all this.
Why don't I find someone to help me, you ask? My Mom does not yet qualify for Medicaid and I was quoted a price of nearly $150 when I attempted to find someone to hire to help . But beyond the expense is the fact that the thought of hiring a stranger to bathe Mom horrifies me. I understand her disease and her responses, I know her, and I love her. For the most part, I've learned to respond in love when she snaps at me out of frustration or weariness. If she were rude to a stranger during the bathing process when she is so vulnerable, what would that person's response be? At the very least most people in the world would respond in kind. I hate the thought of her being cowed into submission by someone unfamiliar to her. I feel so protective of her poor old body. While Mom is aware of who I am and still feels modest or afraid around strangers, I believe that this bathing ordeal is an anointed task that I am to perform. It's my job.
The Lord has shown me how to cope effectively. When I have an intercessor I am able to proceed as though I were a stronger person than I am.
The point of this entry today is the importance of humbling oneself to ask for prayer. If a caregiving task is difficult or even if it is abhorrent; this doesn't mean that we as caregivers need to be excused from the unpleasant task. We can ask God to for strength. We can ask friends to pray.
Scripture: "Dear brothers and sisters, pray for us" (1 Thessalonians 5:25, New Living Translation).
Friday, June 19, 2009
Comforting With the Comfort I've Received
For two years I have been praying that other caregivers will benefit from the comfort the Lord provided me as Mom and I began our journey through Alzheimer's.
I began the writings that would eventually become a book manuscript in 2004, the year Mom was diagnosed with Alzheimer's disease. Those first journal entries were therapeutic and necessary for my emotional health as I transitioned into the role or caregiver. It was spiritually cathartic to fight out those battles through writing with the Lord at my side; analogous to laboring and giving birth. However, each subsequent reading is like laboring to deliver the same child again; rather than allowing the memory of the pain of the travail to fade, I am forced to relive it. This is one reason that I was so exhausted at the beginning of summer. I’d completed a marathon rereading of the manuscript, necessitated by the time delay caused by the economic crisis and my publisher’s subsequent indecision over whether to go ahead with the book. When they decided to publish the book in fall of 2009, I had about three days to zip through the manuscript and make needed changes, and it was beyond wearing, beyond exhausting; it was devastating emotionally. I wrote the book one day at a time, one pain at a time, one issue at a time, but this desperate reliving of the travail of moving into the role of caregiver was like two year's labor being forced into three days time; in a word, awful. And now I’m beginning another review of the manuscript in order to prepare for a web radio interview in late November. I can go slowly and prayerfully this time through.
It is a part of my ministry on behalf of other caregivers to offer myself to this labor once more. The Lord has allowed my caregiving burden to be relatively light; I have not thus far suffered the 24/7 physical labor that occurs for some caregivers. My mom’s particular set of Alzheimer's symptoms have just happened to be things that generally made it easier for me to take care of her rather than more difficult. I have been so blessed, and it seems to me that something is expected of me in return. As I suffered through each phase of the emotional toll of caregiving, I had the luxury of time to bring those issues before the Lord and to record His guidance. It is my prayer that people who do not have the time to wrestle these issues out before the Lord can benefit from the fruits of my labor. I believe that the Lord wants to bring rich comfort and guidance to those who are undergoing that terribly difficult transition into the role of caregiver for a loved one who has dementia. It’s an especially difficult life change to accomplish when there is a role reversal; when the patient is the one who in the past fulfilled the role of caregiver in the relationship.
I have been posting at the Alzheimer's Association's message boards. The boards offer a wonderful opportunity to exchange helpful information and to share joys and sorrows, but reading other people's stories has broken my heart. I pray that my book will help those poor caregivers who need encouragement and hope so desperately. By God's grace and through His guidance I have been given real help for the emotional and spiritual suffering caused when a loved one is fading into dementia. Pray with me that My Mom Has Alzheimer's: Inspiration and Help for Caregivers reaches those who need it.
Scripture: Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows" (2 Corinthians 1:3-5).
I began the writings that would eventually become a book manuscript in 2004, the year Mom was diagnosed with Alzheimer's disease. Those first journal entries were therapeutic and necessary for my emotional health as I transitioned into the role or caregiver. It was spiritually cathartic to fight out those battles through writing with the Lord at my side; analogous to laboring and giving birth. However, each subsequent reading is like laboring to deliver the same child again; rather than allowing the memory of the pain of the travail to fade, I am forced to relive it. This is one reason that I was so exhausted at the beginning of summer. I’d completed a marathon rereading of the manuscript, necessitated by the time delay caused by the economic crisis and my publisher’s subsequent indecision over whether to go ahead with the book. When they decided to publish the book in fall of 2009, I had about three days to zip through the manuscript and make needed changes, and it was beyond wearing, beyond exhausting; it was devastating emotionally. I wrote the book one day at a time, one pain at a time, one issue at a time, but this desperate reliving of the travail of moving into the role of caregiver was like two year's labor being forced into three days time; in a word, awful. And now I’m beginning another review of the manuscript in order to prepare for a web radio interview in late November. I can go slowly and prayerfully this time through.
It is a part of my ministry on behalf of other caregivers to offer myself to this labor once more. The Lord has allowed my caregiving burden to be relatively light; I have not thus far suffered the 24/7 physical labor that occurs for some caregivers. My mom’s particular set of Alzheimer's symptoms have just happened to be things that generally made it easier for me to take care of her rather than more difficult. I have been so blessed, and it seems to me that something is expected of me in return. As I suffered through each phase of the emotional toll of caregiving, I had the luxury of time to bring those issues before the Lord and to record His guidance. It is my prayer that people who do not have the time to wrestle these issues out before the Lord can benefit from the fruits of my labor. I believe that the Lord wants to bring rich comfort and guidance to those who are undergoing that terribly difficult transition into the role of caregiver for a loved one who has dementia. It’s an especially difficult life change to accomplish when there is a role reversal; when the patient is the one who in the past fulfilled the role of caregiver in the relationship.
I have been posting at the Alzheimer's Association's message boards. The boards offer a wonderful opportunity to exchange helpful information and to share joys and sorrows, but reading other people's stories has broken my heart. I pray that my book will help those poor caregivers who need encouragement and hope so desperately. By God's grace and through His guidance I have been given real help for the emotional and spiritual suffering caused when a loved one is fading into dementia. Pray with me that My Mom Has Alzheimer's: Inspiration and Help for Caregivers reaches those who need it.
Scripture: Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows" (2 Corinthians 1:3-5).
Wednesday, June 17, 2009
Whispering Hope
I delivered Mom's evening meds at 9:00 this evening, as usual. I was startled when I offered the little cup of pills only to have her snatch it out of my hand in one angry movement. She spat out, "Did you ever just want to have a mental fit?"
I was so surprised that at first I just froze and stared at her with my hand still outstretched, but then caregiving instincts surfaced and I stepped back, appraising her carefully from head to toe. Nothing seemed amiss other than the angry expression on her face.
Her voice softened and she said, "Oh, I don't know if I can make you understand." She took a deep breath and closed her eyes. "It's a feeling of being useless. You just ask yourself, 'What good am I?'" She opened her eyes, downed her pills, and set the container aside. Matter of factly she said, "I'm questioning the Lord and that's a sin. Besides, I shouldn't say anything because no one cares or wants to take the time to understand."
I sat down. "The Lord is using you to bless us," I said. "Having you here has allowed me to work just half time because you pay me a salary. I love my job now. And just think, if you hadn't gotten Alzheimer's, we'd probably never have built this beautiful addition onto John's and my home. We'll enjoy this for the rest of our lives, thanks to you and Dad."
Mom looked directly at me and then, with no indication of having processed anything I'd said, repeated almost verbatim the same speech she'd just finished about feeling useless and how no one cared or wanted to take the time to understand. I realized she was looping (my coined term for the way she will sometimes repeat the same series of comments over and over with just a few seconds pause between) and to break the loop I said, "I think you do a great job Mom. I'm going to bed now, good night." And I went out the door. As I left I looked back at her. She was shaking her head and rolling her eyes--I'd proven her point. Her perception was that I didn't want to take the time to understand. I'm sure that if I'd remained in the room she would have repeated the same information again. Perhaps I should have tried harder to break the loop, but I've learned through experience that this is difficult to accomplish, especially in the late evening.
I was shaken because for a moment I'd let my caregiving persona slip and had spoken to Mom as I would have in the past, when a true reciprocal conversation was possible. My dad's been dead 12 years but I've never forgotten his face, or the way his hands looked, or how he grinned and wore his hard hat at a jaunty tilt on the side of his head. But tonight I couldn't remember my mother as she used to be. That woman has been overshadowed by the mom I now have, the one who had just hurt my feelings by not hearing or understanding me when I tried to share my heart with her in order to comfort her.
The Lord directed my thoughts to a scene from The Lord of the Rings: The Return of the King. Samwise is attempting to refresh Frodo's heart by reminding him of the beauty of their home, the Shire. "Can you remember, Mr. Frodo?" asks the faithful Sam. But Frodo, injured by the journey and carrying a heavy burden, could not remember. Later, after the ring is destroyed, Frodo says, "Sam, I remember now..."
Tonight I felt frightened of forgetting the wonderful mother I once had. I feared that this travail through Alzheimer's disease would blot out my memories of who my mother once was because of who she has become. I believe the Lord has told me tonight that once the caregiving burden is gone, that my memories of my mom as she was in the past will be restored. A further and more glorious truth is that once Mom's burden of Alzheimer's disease is removed and she is safe at home in the Lord, her memory will be restored (see Philippians 3:21). This Alzheimer's burden is temporary.
There's joy and rest to be experienced here and now, in the midst of this journey, and in the Lord both my mother and I have hope for tomorrow as well.
Scripture: "...hope we have as an anchor for the soul, both sure and steadfast" (Hebrews 6:19 KJV).
I was so surprised that at first I just froze and stared at her with my hand still outstretched, but then caregiving instincts surfaced and I stepped back, appraising her carefully from head to toe. Nothing seemed amiss other than the angry expression on her face.
Her voice softened and she said, "Oh, I don't know if I can make you understand." She took a deep breath and closed her eyes. "It's a feeling of being useless. You just ask yourself, 'What good am I?'" She opened her eyes, downed her pills, and set the container aside. Matter of factly she said, "I'm questioning the Lord and that's a sin. Besides, I shouldn't say anything because no one cares or wants to take the time to understand."
I sat down. "The Lord is using you to bless us," I said. "Having you here has allowed me to work just half time because you pay me a salary. I love my job now. And just think, if you hadn't gotten Alzheimer's, we'd probably never have built this beautiful addition onto John's and my home. We'll enjoy this for the rest of our lives, thanks to you and Dad."
Mom looked directly at me and then, with no indication of having processed anything I'd said, repeated almost verbatim the same speech she'd just finished about feeling useless and how no one cared or wanted to take the time to understand. I realized she was looping (my coined term for the way she will sometimes repeat the same series of comments over and over with just a few seconds pause between) and to break the loop I said, "I think you do a great job Mom. I'm going to bed now, good night." And I went out the door. As I left I looked back at her. She was shaking her head and rolling her eyes--I'd proven her point. Her perception was that I didn't want to take the time to understand. I'm sure that if I'd remained in the room she would have repeated the same information again. Perhaps I should have tried harder to break the loop, but I've learned through experience that this is difficult to accomplish, especially in the late evening.
I was shaken because for a moment I'd let my caregiving persona slip and had spoken to Mom as I would have in the past, when a true reciprocal conversation was possible. My dad's been dead 12 years but I've never forgotten his face, or the way his hands looked, or how he grinned and wore his hard hat at a jaunty tilt on the side of his head. But tonight I couldn't remember my mother as she used to be. That woman has been overshadowed by the mom I now have, the one who had just hurt my feelings by not hearing or understanding me when I tried to share my heart with her in order to comfort her.
The Lord directed my thoughts to a scene from The Lord of the Rings: The Return of the King. Samwise is attempting to refresh Frodo's heart by reminding him of the beauty of their home, the Shire. "Can you remember, Mr. Frodo?" asks the faithful Sam. But Frodo, injured by the journey and carrying a heavy burden, could not remember. Later, after the ring is destroyed, Frodo says, "Sam, I remember now..."
Tonight I felt frightened of forgetting the wonderful mother I once had. I feared that this travail through Alzheimer's disease would blot out my memories of who my mother once was because of who she has become. I believe the Lord has told me tonight that once the caregiving burden is gone, that my memories of my mom as she was in the past will be restored. A further and more glorious truth is that once Mom's burden of Alzheimer's disease is removed and she is safe at home in the Lord, her memory will be restored (see Philippians 3:21). This Alzheimer's burden is temporary.
There's joy and rest to be experienced here and now, in the midst of this journey, and in the Lord both my mother and I have hope for tomorrow as well.
Scripture: "...hope we have as an anchor for the soul, both sure and steadfast" (Hebrews 6:19 KJV).
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