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Snapshots of Dementia: Two Is the Loneliest Number (and Other Reasons I Cry)

Snapshots of Dementia: Two Is the Loneliest Number (and Other Reasons I Cry)

Photo by Xianyu hao, Unsplash I am a person of tears. I cry when I’m sad. I cry when I’m happy. I cry when I worship. I cry—you get the picture. My children remember me not as the mom who screamed when they were disobedient but as the mom who (you guessed it) cried. I’ve written before about these tears here and how, in Tom’s (more and more rare) moments of awareness of his condition, sometimes, we cry.  As far as I can tell, I feel things more deeply than many people. I believe this quality makes me a better intercessor and a better writer, but it also means that, as the wife of a man living with dementia, I cry.  Why do I cry? Not because of the pain of the past, the years when doctors kept saying Tom was fine but his behavior showed us he wasn’t.   Not because of the responsibility. Yes, it still feels like a weight—being in charge of everything about our lives together, from small to big decisions, tasks, schedules, and everything in between—but God has given me what I need, and I’m consistently amazed at His provision.  Not because of the diagnosis. Knowing Tom has what I consider a terrible disease makes me sad, but we waited so long to receive medical affirmation of our suspicions that when it came, I felt more relief than sadness.  Not because of lost jobs. I did cry—a lot—when Tom had to leave his final worship pastor position. We loved our church and the people there. But Tom was in such a bad place emotionally/spiritually/and of course cognitively at that time that I knew something had to shift. So although the tears came, I also realized it was time, probably past time, for him to go.  So why do I cry?  Because of our children. Every mother will tell you she’d rather hurt a thousand times herself than see her child hurt once. All our children are grown now, but their father’s disease still wounds them. We all hate the way dementia is stealing him from us. And I know it gives them additional concerns for the future, all of which I wish I could remove but none of which I can.  Because of our grandson. As I wrote about here, Lincoln and his love for Grandpa have taught me much about genuine love. Lincoln doesn’t mind that Grandpa gets mixed up easily, makes awkward comments, or doesn’t remember what someone told him only a few minutes earlier. But knowing that this little boy will continue to grow, change, and progress while Grandpa grows, changes, and regresses? That makes my heart hurt and my tears flow....

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Snapshots of Dementia: Four Things I Learned in My Crash Course

Snapshots of Dementia: Four Things I Learned in My Crash Course

Yours truly with our oldest daughter, one day post-crash Crash.  That’s what happened to me in mid-May last year.  No, it wasn’t a car accident. We were visiting our local daughter and her family, who all had brand-new bikes. Our then three-year-old grandson was out riding his bike along with his 15-year-old foster brother (if you missed H’s story, find it here).   “Mom, you can take my bike if you want and ride with them,” my daughter offered.  Never mind that I hadn’t been on a bike for years. I used to ride a unicycle, so a bike should be no problem, right?  Never mind that I need to stay well for my husband’s sake. Bike riding helps keep people healthy, right?  Never mind any of the second thoughts I’ve had since that eventful day.   I dutifully donned my daughter’s helmet (for which I am still thanking God) and rode down their long driveway behind the boys. I won’t bore you with all of the details, but after a few successful rides up, back, and around the drive and cul-de-sac, I hit some gravel. The bike flew one way, and I flew the other: down.   Cut to the emergency room, one stitch in my left eyelid, bandages over deep wounds in my elbow, bruises and swelling on my face, and a broken left humerus (upper arm bone). My daughter, who went with me, brought me home around midnight. Under the influence of pain meds, I lost consciousness at home early the next morning, hitting my forehead on a door and wedging myself inside the bathroom in the process. My new motto: Go big or go—back to the ER.  Another visit there for my daughter and me, but thankfully no concussion or other major injuries (the giant hematoma waited a few days to pop up on my forehead).  This began a long saga of doctor’s visits, physical therapy, and ultimately a reverse shoulder replacement and more physical therapy. Almost a year later, my arm/shoulder still isn’t 100 percent, but it’s much better.  Tom didn’t crash. He didn’t even—thankfully—see the crash take place. But through this time, I learned a few lessons to add to my care partner knowledge, and I want to share them now.  1) “Big feelings” happen. This is true not just with our four-year-old grandson but for those living with dementia too. As soon as the ambulance left, Tom paced around our daughter’s backyard for an hour or so, crying. Seeing me leave in the ambulance upset him for days. His brain can’t process change well, and his amygdala, the part of the brain that handles emotions, was working overtime. Anyone would feel upset if their...

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PRAY: Prayer for Those Giving Care to a Loved One

This week marked the anniversary of my father’s death on June 10, 2012. I spent that day working and also thinking of the many ways he influenced my life and the person I have become. But I can’t think about my dad without also thinking of my mom and her many years of caregiving. Dad endured a two-plus year battle with oral cancer (and no, he never smoked or used tobacco) that metastasized. Mom transported him to countless medical appointments, waited for him during surgery, drove him five days a week for two different sets of radiation treatments, and managed the special dietary needs that came with the associated swallowing and other problems that developed. The accompanying picture was taken near the end of this difficult season. But Dad was also a diabetic for more than forty years. He suffered multiple toe amputations and other foot surgeries as well as dealing with neuropathy, glaucoma, and other diabetes-related issues. I know he would not have survived as long as he did without Mom’s patient weighing of portions, balancing of carbohydrates, dressing of wounds, and constant adjustments as his needs changed over time. To be honest, it took a while for me to think of her as a caregiver. To our family, and to Mom herself, she was simply doing what she did: loving my dad and taking care of his needs. And that’s what I see so many caregivers doing today. If you’re in that category, or you know someone who is, perhaps you’ll join in this prayer: Lord, Today I lift up those giving care to a loved one. I know they are on a journey that may seem without end—or without an end that provides relief. You are not only the great Physician but the One who knows, the One who sees. I praise You for Your choosing and calling of each one who cares for someone they love. I thank You for equipping them for this wonderful, terrible task. Some of them are taking this journey willingly but sad that it is needed. Others never wanted to begin traveling but felt they had no choice. Some would love to find another road. Some are clinging to both the journey and the one for whom they provide care. Father God, You see their needs. You know their hurts and joys. Would You reach down today to touch those who care for loved ones? Would You give them a smile when circumstances bring tears? Would You add extra strength to all they extend? Would You rise up within them to give just the right word, just the right touch, just the right encouragement at just the right time? Our...

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READ: Review, Because You Care by Cecil Murphey and Twila Belk

“How is he?” I find myself asking when I see my friend. Her husband suffers from dementia, and although both are aging, she has become the gentle caregiver for her often-childlike spouse. “Lord, give her the strength to meet his needs today.” I pray these words often for my mother, now my father’s caregiver. Diabetes and three cancer diagnoses have changed him from an active, robust man to one whose narrow world revolves around doctor’s appointments and treatments. When I opened Because You Care: Spiritual Encouragement for Caregivers by Cecil Murphey and Twila Belk (Harvest House, 2012), I expected to find a gentle, peaceful read—and I did. Beautiful photographs add to the book’s overall aura of calm. But I also found something unexpected: conviction. As Cec, Twila, and selected others shared thoughts about their own caregiving experiences, I reflected on the growing number of caregivers I know. The journeys described in this brief (48-page) volume challenged me to become more sensitive not only to those who require long-term care, but to the heart-breaking responsibilities of their caregivers. How much should I do for him? How will she know I truly care? What will the future hold? The authors’ honest reflections on these and other questions provide empathy and inspiration to caregivers and those who love them. The prayers, summary statements, and practical suggestions presented in a brief, easy-to-manage format make this book a perfect companion for caregivers’ busy lives.   Thank you, Cec and Twila, for this thoughtful, transparent work. Next time I see a caregiver, I’ll ask, “How are you?” before I ask about anyone else. I’ll focus my prayers as much on the needs of the caregiver as on the one who receives care. And I hope to display more sensitivity to the delicate balance of the caregiving life. I plan to give a copy of Because You Care to my mother, but I’ll donate my review copy to someone who leaves a comment below. Tell us a bit about yourself as a caregiver or another caregiver you know. I’ll choose one reader at random to receive my review copy which you may share with your favorite caregiver. US addresses only, please, and include your email address or link to it in your comment.  Find a local Christian bookstore Find this book on Amazon, at Barnes & Noble, or at Christian Book Distributors (FTC Disclaimer: I received a copy of this book free from the publisher. I was not required to post a review or a positive...

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