Surgery was successful, I'm happy to report. My leg is sore, but getting better every day. I'll spare you a photo of the scars. I've been on pain meds most the week and feeling a bit disconnected, so I'll also spare you my writing.
However, you may be interested in a new documentary being made about the relationship between dementia and food choices. It's called Bread Head. You can find information about it at the following link - just copy and paste it into your browser: https://www.kickstarter.com/projects/maxlugavere/bread-head-can-we-prevent-americas-most-feared-dis The young filmmaker says, "This is not another documentary exposing the hardships of dementia. There are plenty of those.BREAD HEAD (working title) will be the first documentary to investigate the empowering science that is happening in labs and clinics today to help us beat it. Because changes in the brain begin decades before Alzheimer's symptoms, the absolute best way we can move the needle on this disease is through minimizing risk when it matters most." I thought I'd share this with you in case you are interested in his film and in helping him out.
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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.
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. There is a saying that goes, “Preach the gospel at all times and when necessary, use words.” It's been attributed to St. Francis of Assisi, but turns out he never said that. The closest thing he said was something about how Franciscans should follow their preaching. The book of James teaches this same principle in the first chapter. Starting in verse 22, James says “Do not merely listen to the word, and so deceive yourselves. Do what it says. Anyone who listens to the word but does not do what it says is like someone who looks at his face in a mirror and, after looking at himself, goes away and immediately forgets what he looks like. But whoever looks intently into the perfect law that gives freedom, and continues in it—not forgetting what they have heard, but doing it—they will be blessed in what they do." Do what it says. Why is this important? Because you never know who is watching your life. I'm always surprised to find out that someone has been observing my actions. I see myself as an ordinary woman. I'm not very exciting. So when someone tells me they've seen God in action in my life, I'm always left a bit awestruck at the idea. When I was taking care of my mother, I went over every day. Day in, day out. I felt invisible to the rest of the world. One day when I went over, I found her with small, wadded up paper towels cleaning the door sill by her entryway. As soon as she saw me, she started screaming that this place I moved her to was filthy, and that it wasn't cleaned before she moved in. That simply wasn’t true. Moreover, her house had been a cesspool when I moved her – it was covered in filth of cats with no cat litter available, and the smell had been overwhelming. But because her outburst came at me seemingly out of nowhere, against all reason I replied, “This is dirt you tracked in from gardening.” That was a big mistake. It sent her on a tirade of how she's only been there a few days, she never went out and it couldn't be her. Because I'm a slow learner, I replied, “A few days? You've been here two months!” That really set her off, and she screamed that I was lying and the cycle was in full swing. Later, I met Mike for lunch and it was clear that I was not doing well and he was frightened for me. I told him about mom's continual self-pity and how she was always complaining that her old life was so much better and now it's all gone. My life was gone as well and I was grieving that. I shared that with Mike and remarked that I'm not any different from my mother. He was incredulous. “Not any different? Not any different??? That's totally unrealistic! Donna, it's awful of me, I know, but if I'd gotten that letter, I would not have answered it. You've shown me a new level of the Christian walk I've never seen. That woman has never been kind to you. She's always been unpleasant and, God forgive me, I would have thrown that letter away. But you walked in forgiveness. You're taking care of everything on your own, and you know if the situation had been reversed you would have been abandoned.” I looked at him in wonder. God bless that man. He gave me a new perspective and he spoke truth. It helped me keep going. It also showed me that someone was watching my life and was being affected by it. Over the years of caring for her, more than one person remarked on watching me when I was totally oblivious of the fact. So keep in mind the quote misattributed to St. Francis. Preach the gospel at all times and when necessary, use words. Your life is your message. Note: the letter my husband was referring to was Mom’s, when she contacted me to ask forgiveness and to ask for help. See the post titled, “Beginnings.” In almost 30 years of marriage I have never once been angry with my mother-in-law. Not. Once. There may have been times of occasional frustration or missed communication, but never anger. Until now. Recently, my father-in-law was hospitalized and had surgery for colon cancer. He also has the early to mid-stages of dementia. The hospital stay was difficult for him. He did not understand why he was there. He sometimes thought he was in a hotel. Other times, he thought he was in a storage unit. I took Mom to visit every day and it was lovely to see how she could bring Dad from an agitated state to a temporary place of calm and understanding. Mike and I were greatly relieved when the doctor ordered in-home nursing. We felt it would help in Dad's transition as he continues to lose ground to memory loss. So after I had taken Mom out for an afternoon of shopping, I asked her what the visiting nurse had to say about Dad's recovery. The visit hasn't happened and isn't going to happen. When I asked why, Mom said the doctor's office had called and wanted Dad to come in so the doctor could sign off on the visiting nurse. Mom told the office she couldn't get him there. Again, I asked her why. Why did she say that, when she knew I'd be willing to take them? Bottom line – she doesn't want a visiting nurse. She was ticked when told that in order for dad to go home, she'd have to have a visiting nurse to check the wound and remove the staples, a physical therapist to help Dad with a walker, and an occupational therapist. She was truly irked that (in her words) she had no choice in the matter. When the doctor's office called, she saw her opportunity to cancel. This woman, who is 92 years old, has congestive heart failure, can barely get out of a chair without help and needs a walker is determined to take care of her husband by herself. I could scream. But I don't. It occurs to me, our relationship has just deepened. I'm very angry with her decision. It endangers her and Dad. It increases the work load for Mike and for me. It's not a good plan. But I still love her. Now, I don't just love her because it's easy. Now I love her in spite of it being rather difficult. That reminds me about the 'love passage' in I Corinthians 13 that starts in verse 4 saying, “Love is patient, love is kind...” I truly hope I'm that sort of lover. |
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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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