The other evening, my husband and I were driving together. It’s rare these days to have a moment of privacy so I took the opportunity to ask him how he was doing. At first he gave me the standard, “Fine” answer but I dug deeper. With all that’s coming at us with Mom in rehab and trying to keep Dad safe on his own, work and the daily situations of life like car repair, I wanted to know what was really on his heart. “No,” I said. “How are you really doing? How are you handling all that’s coming at you right now?” He looked ahead and sighed. “I feel as if I’m watching a train wreck in slow motion and there’s nothing I can do to stop it,” he said. Tears welled up in my eyes and I reached over for his hand. There was nothing I could say. It was an apt description of watching a parent succumb to Alzheimer’s. Meanwhile, across town, a friend of mine was coming home after being at the hospital all day with her mother. She was exhausted, developing a sore throat and deeply discouraged. Her mother had driven into a tree in the parking lot of her apartment complex. She had a broken nose, the front end of the car was a mess but she had no recollection of the accident. She doesn’t understand why everyone keeps telling her her memory isn’t good, nor why they want her to stop driving. In yet another part of town, a niece was trying to spend time recollecting with her confused uncle who had severely broken a hip after a fall and would pass away a couple days later, leaving a wife who also has dementia. And on it goes. I could tell you about an aunt who lives in Texas and was found in Oklahoma after driving for a day and a half, forgetting where she was going, or the woman who left her apartment in Ohio on foot, trying to find her house in Chicago. She hadn’t lived there in over fifty years. Currently, there are over 5 million people in America with Alzheimer’s and each of them have a story. Their story, in turn, ripples out to touch others. Millions of people are involved with either developing this disease or caring for someone with it. Dementia is taking a huge toll on individuals, families, communities and the nation. And yet, a chronic underinvestment in Alzheimer’s research persists. If you are interested in advocating for more funding for a disease that none of us is safe from, please consider writing your representative. You can go to https://act.alz.org/site/Advocacy?cmd=display&page=UserAction&id=1295 to fill out a form urging action.
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A brief litany of the past three months…
In January, I had surgery on my left leg to remove some hardware from an accident I had about five years ago. There was intense nausea the first day, but all was well in spite of that. Had to get off the pain meds faster than the doc may have wanted because Mom K. had a stroke and I needed to be able to drive back and forth to rehab and to Dad’s apartment to keep tabs on him. My yearly mammogram showed a suspicious lump, and I had to go back for more tests (all is well!) and Mike had emergency eye surgery to prevent his retina from being detached. Early in March, on my way to see Mom in rehab, my mind in other places I got off the highway and didn't slow down fast enough. The result was that I was pulled over by the police. Fair enough. I explained to officer what was up, gave him my info and waited. Recall that in September, Mom was also in ER and rehab. That's when my insurance was due, and while we paid the insurance, I did not put the certificate in the car. I got a verbal warning for speeding and a ticket for not having proof of insurance in the car. There’s also my job, a few trips to ER for Mom and Dad, and other smaller crises, and you get the idea. Elder care is not for the faint of heart or organizationally challenged. The latest crisis-du-jour seems to be dealing with assisted living facilities. During the lull before the latest storm, my sister-in-law, brother-in-law and I visited different homes with a specific list of questions about companion suites where Mom and Dad could stay together. After narrowing down the search and speaking to different directors, we put down a sizeable and non-refundable deposit to hold a space for my in-laws in a place not too far from my house. My sister-in-law has been able to visit from out of state to help out with looking after Dad, and during her latest visit went to the place to check on availability on the chance we may be moving the folks when Mom is released from rehab. She was told that, contrary to what we'd been assured before, they can’t live together. They are sure we weren't misled, and of course you can’t get your deposit back. The former director, the one who assured us that this was the place we were looking for, is no longer there. Isn't that special? The situation is ongoing, and yet to be resolved. I'm not sure if we’ll be taking legal action or if the administrators of this place will work with us for a better resolution. That remains to be seen. But it does seem that legislative work needs to be done in the area of elder care so that families can be free to care for their loved ones without running through a series of hurdles and financial obstacles to get them the care and help that they need. When I took my mother to a neurologist to get a complete workup on her memory issues, the diagnosis came with a thud. Alzheimer’s. While Mom sat there unfazed, I was left feeling hollow inside as a variety of emotions fought for control. The doctor looked at me and said rather casually, “You have nothing to worry about. This isn’t the hereditary kind.” Nothing to worry about. Is that so? When Mom was diagnosed, the numbers showed that one in twelve adults were developing some sort of dementia. Over ten years later the numbers are now one in six. It may not be hereditary, but there is certainly an epidemic happening that can affect anyone. I have long suspected that something is up environmentally or behaviorally that is causing the increase in the occurrence of Alzheimer’s. In 2005, a study by Susanne de la Monte's group at Brown University in Providence, Rhode Island, identified a reason why people with type 2 diabetes had a higher risk of developing Alzheimer's. In this kind of dementia, the hippocampus, a part of the brain involved in learning and memory, seemed to be insensitive to insulin. Not only could your liver, muscle and fat cells be "diabetic" but so it seemed, could your brain. Feeding animals a diet designed to give them type 2 diabetes leaves their brains riddled with insoluble plaques of a protein called beta-amyloid – one of the calling cards of Alzheimer's. Scientists also know that insulin plays a key role in memory. Taken together, the findings suggest that Alzheimer's might be caused by a type of brain diabetes. When I heard of this study it felt that my suspicions were confirmed. Because my mother and now my father-in-law developed dementia, I find myself trying to keep up with the latest research on the problem. There is very exciting news that has come out on a study that actually reversed memory loss. Dr. Dale Bredesen has had a very promising results with ten patients who had been diagnosed with Alzheimer’s disease. Of the ten, nine had their dementia reversed. The tenth was actually in late stages of the disease. The doctor is optimistic but does warn that the results are anecdotal and a more controlled clinical trial is needed. Still, it is an interesting and encouraging approach. He has developed a protocol and personalizes it to each patient. In one patient, the program called for a gluten free diet with increased vegetables, fruits and non-farmed fish, stress reduction, taking melatonin at night, getting eight hours of sleep each night, optimizing oral hygiene, fasting 12 hours between dinner and breakfast and for a minimum of three hours between dinner and bedtime, and exercise. Another patient added coconut oil, probiotics and turmeric to the mix. If you are interested in reading the paper, you can find it here: http://impactaging.com/papers/v6/n9/full/100690.html Be warned, it is pretty technical, but if you scroll down to the case studies you’ll see more of the protocols followed. I look forward to hearing more about this research. In the meantime, I’m looking at my own lifestyle and seeing where I can improve my health habits. Dental floss, anyone? Sorry about the link. It should be working now.
There are times I am amazed at the wonderful man I have for a husband. It’s not that I didn’t date good men when I was young and single, but because I didn’t have a good self-image, I would sabotage those relationships and end up obsessing over men who, frankly, were trouble. But I did a wise thing in my youth. I prayed a very fervent and sincere prayer. Seeing many of my friends doing foolish and destructive things for ‘love’, I knew that on my own I would make the very same mistakes. So, I cried out to God not to let me settle for second best. In spite of my foolishness and willfulness, He honored that prayer; but I did not make it easy for Him. Nonetheless, I ended up with a man who is kind and supportive beyond measure. He has been a studio assistant, a copy editor, a compassionate caregiver, a lifter and mover of heavy things and whatever else I’ve needed along the way. He cares for me, encourages me, he’s helped me care for my mother as she descended into Alzheimer’s and now he’s caring for his parents. Just this week, he took care of me as I went through some medical procedures, he cared for his dad as he had to relinquish his driver’s license, and in the middle of the night he cared for his mother’s geriatric cat who is diabetic and was in serious stress of an unknown infection – going to pick up the cat and his parents, taking them to the animal hospital, and caring for his mother as she had to leave her beloved pet for the night. Now he is making sure the cat lives another day by going over twice each day to get antibiotics down her throat, ointment into her eyes, and give her shots of insulin. His sacrifices for love are monumental. I am truly blessed. I will leave you with this.... Sonnet by William Shakespeare Let me not to the marriage of true minds Admit impediments; love is not love Which alters when it alteration finds, Or bends with the remover to remove. O, no, it is an ever-fixed mark That looks on tempests and is never shaken; It is the star to every wand’ring bark, Whose worth’s unknown, although his height be taken. Love’s not Time’s fool, though rosy lips and cheeks Within his bending sickle’s compass come; Love alters not with his brief hours and weeks, But bears it out even to the edge of doom. If this be error and upon me proved, I never writ, nor no man ever loved. You know your life is out of balance when you are looking forward to a colonoscopy, knowing that for one day you will be unavailable and blissfully under anesthesia. I recognize this feeling. This is how I often felt when I was taking care of my mother. This is called “compassion fatigue” and it is a form of burnout. It happens to those who serve others without giving enough thought to their own needs. I have reached this point. It is not because I am unaware of my own needs, but rather that things have to be taken care of and it’s up to my husband and myself to care for them. This past week my sister-in-law and her husband were here from out of state and they were a big help. We were able to search for some care facilities that would provide memory care for Dad, but also provide a space where he and Mom could stay together. There are precious few facilities that provide that sort of service. After many appointments, phone calls and visits, we were able to find one that we could all live with and are in the process of getting on the waiting list. Tomorrow, I take Mom to a doctor appointment. Of course, Dad will come to “help” which makes the process longer. After the appointment, I take them back to their apartment, get them safely squared away and then go to work for eight hours. Tuesday is an equally busy day, but Wednesday…ah Wednesday! I’m scheduled for a colonoscopy. I will sleep for most the day and no one can expect anything from me. The apostle Paul wrote in the book of Colossians to ‘clothe yourself in compassion, kindness, humility, meekness and patience’ (Col. 3:12 ISV). I love the metaphor of wrapping myself in the garments of kindness. I don’t love the fatigue that comes when I don’t show the same kindness to myself. When I was caring for my mother, there were wonderful people who came along side me and helped me helping her. The very best was when someone would come and visit her to give me time off. God bless each and every person who did that. Taking a therapy dog to visit her, spending and evening making dinner and sitting with her, taking her to church or into their homes for a holiday so we could spend time with Mike’s family. Priceless, priceless gifts of their time. If you know someone caring for someone with dementia or some other disability, have compassion on the compassionate. Clothe yourself with kindness and give them some time off to catch their breath. They’re in a marathon and they need you. But Jonah got up and fled from the Lord…. (Jonah 1:3a International Standard Version)
Jonah is not the poster child of what we should aim for in our relationship with God, but I have to admit ... I relate to him. I currently find myself in a position that I would like to flee. A couple weeks ago, my mother-in-law was reaching for something that was j u s t out of reach. She tried to extend her arm a bit more and something went ‘pop’. Long story short, she tore a bicep. Due to the medications she’s on, it started bleeding and her entire arm was swollen and the color of an eggplant. Eventually, she landed in the hospital. After being there for almost a week, she has been transferred to a rehab unit. Through all of this, I’ve been there, being an advocate, being sure things are being communicated effectively, making sure the doctors have the correct information on meds and conditions, and dealing with my father-in-law who has beginning to mid-stages of dementia. Being out of her normal routine makes mom a little fuzzy, too, so it’s important for me to stay on top of everything. It’s the same in rehab. Dad is confused and convinced we’ve placed mom someplace to die and breaks into sobs. I’m trying to comfort him, make sure the staff knows to keep mom’s arm elevated every time they re-position her after therapy to make sure she has her balance and strengthens her legs. In the meantime, mom is plotting how to get out of there and not have to do therapy anymore. “It’s dumb,” she tells me. She wants to go home and have the in-house physical therapy work with her. I know from past experience that if we do that, she’ll cancel it and just sit on the couch. I’m the mean enforcer. All of this takes me back to the time I was caring for my mother as she was losing to Alzheimer’s. It was one long battle, day after day, to keep her safe and cared for. She didn’t want to be cared for. I was the mean enforcer then, too. All kinds of emotions are being stirred up these last two weeks, and none of them good. Lying in bed one morning, I was thinking, “Just shoot me now.” My life was once again shrinking down to nothing but caregiving. No art. No writing. No time for friends. I’ve quit working out due to time and energy. Just get up, pick up Dad, go to rehab, oversee Mom’s care, talk with staff, notify the family on the latest developments, and then take Dad home. Repeat. Next week I have to add work into the mix. I’ve been through this before, and while I love my in-laws more than I can say, I want to jump on a boat and go the other way. It was in this frame of mind, while in prayer, God directed me to I Samuel 15 and 16. This is the passage that relates what happened when David’s son tried to take over the kingdom. David fled with his entire household – most likely to avoid a siege and the destruction of the city – and encountered some who wanted to help and others who wanted to curse him. One man was throwing rocks and dirt on him screaming invectives and gloating that God was paying David back for perceived evil. One of David’s warriors got fed up and offered to kill the man. Here is the part that spoke to me that day – David told him that God was in control. Perhaps the Lord was telling this man to curse, or the Lord would hear these curses and restore him to his kingship. Either way, he was going to trust God knew what He was doing, and was doing it. While I’m about the same age David was when he went through that trial, I am not in a position where I am responsible for hundreds of people on the run with me. I am merely caring for two elderly people. God is in control and has something for me in this. He also has something for my husband and his parents in this as well. When He is ready, He will either restore me to a life of art, or He will take it away. In either scenario, He is in charge and He is good. I have a history that proves it. Poor little mama. She could never catch a break. She was the surprise baby that supplanted the youngest brother and he never forgave her for that. She grew up in an angry household. She escaped to work in a factory in Detroit only to meet a very handsome man, elope and have a brief, but disappointing marriage. Motherhood didn’t work out for her, either. It just wasn’t her thing and one of the wisest things she ever did was give me to my grandparents to raise. By the time I came around, things had mellowed out a bit so it wasn’t quite as hard as she’d had it. One thing she did do very, very well. She was a hard worker. She worked for a major retailer, slowly climbing up the ranks in the bookkeeping department. Women didn’t hold managerial positions in her time, but she did make it up to office supervisor. She gave everything she had to that company, and yet when things got tight in the economy, they showed her the door via early retirement. The one thing she loved and was loyal to, didn’t love her back. She thought I’d be her entertainment during retirement, but she just couldn’t be in relationship with me. When I drew the line and spelled out my boundaries, she chose to disconnect. For a decade. Actually, a bit more than a decade. Still, when she was in need, I did step back in. I took care of her the last seven years of her life. It was rough on both of us, but she suffered the most. And then, she died. We buried her in the autumn in the same cemetery as her parents and grandmother. She was laid to rest in a new section of the cemetery – far away from her family. The sexton told us we couldn’t lay a headstone until the following year. Because of other emergencies that life brought to us, I couldn’t get the headstone until this spring. I chose a small, pretty design. Nothing flashy, but it was the same color as her parents’ and I thought she’d like it. There was a family reunion in the area last weekend, so I went to visit. Two hours, two phone calls (to Mike to call the sexton for me), and copious bug bites later, I finally found her headstone. It was wedged in between two other large family stones and looks like someone took a shoe horn to fit it in. You can see in the close-up photo that the stone on the right is an inch away. The stone on the left is the same. Nowhere else in the cemetery are the grave markers jammed together like that group. I was deeply saddened. My poor little mama. It’s been ten years ago today that we moved my mother from her house in the Detroit metro area to Grand Rapids. It was an event that radically changed both our lives. While she knew her memory was failing and that she needed help, she also realized she was losing her home, her friends and everything familiar to her, and she was grieving that. I knew I was putting my entire life aside to help the woman who gave me birth, but didn't raise me. And though I had already stepped into her life after not hearing from her in over a decade and done the hard work of forgiveness, now started the day to day grind of walking it out. Throughout that journey, my life kept shrinking. I quit painting, I quit volunteering, and I quit working…bit by bit I had to let things go until all I did was look after my mother, who was increasingly resentful of me. Frankly, I was resentful of her as well. We all long to have a destiny. I think that’s why Rick Warren’s book Purpose Filled Life was such a big seller. People long to have a deeper purpose than just getting up every day and going through the motions of living. As my life shrank more and more and I became invisible to everyone around me, I grieved that I no longer had a future. I had no idea how long this season would last, but I knew the world wasn't waiting for me when it was over. Life was moving steadily on, friends and acquaintances were moving ahead in their careers and lives while I shepherded mom through the last years of her life. A rather startling experience occurred a couple years into caregiving. I was at a conference when a young woman I’d never met came up to me and said that God had revealed to her that I was an artist of some kind and that God wanted me to pick it up again and use it for Him. It took my breath away, and gave me great hope. But back at home, the day to day grind would continue and a couple years later I’d wondered if I’d missed the boat. God sent another stranger to say the same thing. It’s exciting to have a destiny, and to have had the supernatural experience of people coming up out of the blue to confirm it. But I think we may forget that a purposeful life is filled with insignificant things. Laundry, cleaning, cooking, computer crashes, power outages, paying bills and other nagging, boring details make up our lives leading up to other times of great satisfaction. The graduation of a child, becoming teacher of the year, publishing a book, giving a presentation, receiving a contract for a gallery show, or any number of wonderful things are made up of really insignificant times. Changing diapers, making lesson plans, writing and re-writing, practicing in front of a mirror, working on fundamental skills over and over. All this and more takes place before the big things come to pass. As a result, our thoughts can wander into dark places. “I’m a failure. This is useless. I have nothing to contribute.” These thoughts are poisonous. It is good to remember when Jesus was baptized and a voice from heaven said, “This is my Son, in Whom I am well pleased,” that Jesus hadn't done one miracle, hadn't called one disciple, but had just put in His time growing up, learning a trade and developing a relationship with His Father. Could it be that the insignificant things that feel like wasted time actually matter to God? It is good to ponder on this as I’m transitioning back into art and writing. I’m back to working on fundamental skills. Every day is a reminder on how far behind the curve I am. I’m right on track. Note: The observation about Jesus' life comes from a CD series by Francis Frangipane called Holiness, Truth and the Presence of God. Here is a link to purchase that set. It also comes as an MP3 format. Used by permission. http://www.arrowbookstore.com/Merchant5/merchant.mvc?Screen=PROD&Store_Code=API&Product_Code=2FF-046&Category_Code=Audios Another Mother’s Day is past, thankfully. While I enjoyed celebrating my mother-in-law and spending the day together, I’m just not a fan of that particular holiday. It stirs up a lot inside that I’d rather ignore. It’s better than it was in my youth, but reading all the schmaltzy posts on Facebook about how great mothers are gets tiring. Author Anne Lamott wrote a piece for Salon in 2010 on Mother’s Day which really nailed it for me. (You can read the entire piece at: http://www.salon.com/2010/05/08/hate_mothers_day_anne_lamott/) She wrote: “But Mother’s Day celebrates a huge lie about the value of women: that mothers are superior beings, that they have done more with their lives and chosen a more difficult path. Ha! Every woman’s path is difficult, and many mothers were as equipped to raise children as wire monkey mothers. I say that without judgment: It is, sadly, true. An unhealthy mother’s love is withering.” If you’ve read much of my blog, you know my mother did not parent well. That’s just the way it is. She wasn’t even a “good enough” parent. She just couldn’t do it. In a rare moment of honesty she told me that she thought that since Grandma had been such a good mother, she’d naturally be one, too, and was surprised at how those maternal instincts never kicked in. But lest the reader thinks my mother was the personification of evil, I should set the record straight. Mom was damaged by her own home life and her marriage, and just couldn’t recover. I was collateral damage, but it wasn’t intentional. She did her best to provide for me by working full time at Sears in the bookkeeping department and she was also very aware of the potential of sexual child abuse. Paranoid about it, actually. I only met one man she dated when I was in my teens. The rest she kept away. The one I met was a peach, but I think he knew that mom was not marriage material and moved on. I remember him fondly. Our relationship broke down so much that for over ten years mom didn’t even speak to me. Our story is not dissimilar to the story Jesus told about the prodigal son, except she’s the one who left and I’m the one who forgave and welcomed her back. It took Alzheimer’s to get her to the place to ask for forgiveness. Not a small thing for her to do. While I try to be absolutely honest in my recollections about my life, here’s something I don’t want you to miss. While my mother was a deeply flawed person, she did ask for forgiveness and I did forgive her. Through forgiveness, I learned much more about faith, life and love. I’m still on a journey of healing, but caring for mom through Alzheimer’s took me much further down that road than if I had hardened myself to her and refused to let her back into my life. If there is someone in your life who has failed you in a major way, do not hang on to unforgiveness. It only hurts yourself. Jesus pointed out when He was teaching the disciples to pray that we are in God’s debt and need to forgive as freely as He did. We like to skip over the part of the disciple’s prayer (aka the Lord’s Prayer) that says “And forgive us our debts, as we also have forgiven our debtors.” We love being forgiven…it’s just letting other people off the hook that’s so hard. But remember...it’s a biblical principle that we will be treated as we treat others. Note: If you have been abandoned by a parent, you may want to pick up Leslie Leyland Fields’ book Forgiving Our Fathers and Mothers. It’s about finding freedom from hurt and hate and written with Dr. Jill Hubbard. In an effort to restart a creative life after years of caregiving, I splurged on season tickets for the Grand Rapids Ballet. Once a month or so, I get dressed up, find a friend who’s interested in going, and have a night out that includes visual and musical delights. The most recent performance was called MOVEMEDIA, which is a group of contemporary works commissioned specifically for Grand Rapids’ company. Patricia Barker, the director of GR Ballet, gave a brief talk before the performances and explained the process of commissioning the pieces and how the different choreographers worked. Rather than commissioning based on reputation or resume, the dances were chosen based on ideas, giving the work an innovative look at dance. The call for work was answered from artists worldwide. It promised to be an interesting night. My friend and I took our seats and the first dance was introduced. This was a piece from a Spanish choreographer named Pedro Lozano Gomez. While working with the dancers he did not reveal to them what was going on in his life. He (and they) worked on the expressiveness of the dance. He wanted them to focus on their expression, and did not want their sympathy. Initially, he chose a title that expressed what life feels like with something vital missing. I believe it was “Missing a Limb.” However, Ms. Barker prevailed on him to name it “Juana” after his mother. The main character in the dance is “Mother” and the dance is about slowly losing her to Alzheimer’s. This fact was revealed right before the curtain was raised and it sucked the air out of my lungs. Since, by current statistics, one in six seniors are dying with some sort of dementia, I feel rather confident that I wasn’t the only one. Still, there’s little comfort in that. Thank God for kind and sensitive friends. Cindy leaned over and whispered, “Are you ready for this?” “No,” I replied. But just the act of asking me made it bearable. The performance was heartbreaking to me. As “Mother” was slipping away, I saw the others as her children and memories trying to bring her back to them. She drifts farther and farther away. I was quietly crying throughout the piece. I pray that someday the art I create will have that much power. |
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July 2021
Donna KemperDonna Kemper put aside her art career to care for a mother she hadn't seen in over a decade. For seven years she followed her mother's journey into dementia, caring for her and putting forgiveness into action. Categories
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