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 GIVING IS ALL WE HAVE - by Alberto Rios *One river gives Its journey to the next.* We give because someone gave to us. We give because nobody gave to us. We give because giving has changed us. We give because giving could have changed us. We have been better for it, We have been wounded by it-- Giving has many faces: It is loud and quiet, Big, though small, diamond in wood-nails. Its story is old, the plot worn and the pages too, But we read this book, anyway, over and again: Giving is, first and every time, hand to hand, Mine to yours, yours to mine. You gave me blue and I gave you yellow. Together we are simple green. You gave me What you did not have, and I gave you What I had to give—together, we made Something greater from the difference. ~ ALBERTO RIOS © 2014 for the Academy of American Poets today Used with permission. To learn more about this poet, go to http://www.poetryfoundation.org/bio/alberto-rios This beautiful poem turns my thoughts to a passage of scripture. Jesus talks about what it means to be a disciple in Matthew 10. At the end of his teaching, He says, “And if anyone gives even a cup of cold water to one of these little ones who is my disciple, truly I tell you, that person will certainly not lose their reward.” This is a guide to being a follower and reflector of Christ. Not everyone is called to be a great teacher or powerful evangelist. Not everyone is called to be a reformer or influencer of nations. But anyone and everyone can extend their hands and give cups of cold water. By their very nature, cups of cold water are small things, easily forgettable if you aren’t paying attention. The people who extend them do not draw attention to themselves, but life would be poor, indeed, without those small, and I would argue significant, acts. Moving Mom to Grand Rapids opened up a treasure trove of cups. So many people helped pack, transport, move, and clean…it was amazing. People I knew, and some I didn’t know at all came out to help. In one day, her house was cleaned out, her furniture was transported and cleaned and her apartment was set up and made hospitable. Each person did a part so that I didn’t have to do it all. That was a day of incredible blessing to us. One woman took her dog to visit Mom occasionally, which delighted her. Another volunteered to pick her up for church every single week. Another would go walking with us in a nearby park. When I had to ready Mom’s house for sale, people extended help of all kinds. Painting, patching, ripping out carpets, visiting, and encouraging. Whatever they were able to give, it was all appreciated and refreshing. Cups of cold water seem insignificant, especially in a world that screams that to be successful and fulfilled, you need to have notoriety. But the Lord notices what is done to and for the least of His followers. It seems it’s not the cost, nor the skill, nor even the quantity He observes. He’s paying attention to the motive. What we do to His followers because they are His, He will repay with the riches of His grace. While many of the people who offered help loved me or my mother, many didn’t know me at all – they just wanted to extend God’s grace through their lives. The giving and receiving of cups of refreshment makes something great and beautiful. Frozen water was everywhere. Another polar vortex had arrived turning November into January in one blast of frosty air. Of course, I could not stay inside and keep warm sipping cocoa. My mother-in-law had been hospitalized and was being released that day…in a snow storm. I had been shoveling for four hours. First, to clear off the walks and steps, then to clear the front of the garage door, and then to dig out a path in the alley to get the car to the main street. The snow was wet and heavy and I was feeling my age. But perseverance paid off. I broke through to the street. It was now time for a cup of tea and a breather. Time to try to pull myself together for the next part of the day. Getting Mom discharged, bundled up, into the car and back to her apartment. This time, I was leaving Dad at home. Dealing with dementia and a blizzard plus transporting Mom with an oxygen tank was too much for me and I had to draw the line somewhere. The left side of my back was starting to throb. We could have transported Mom home in an ambulance, but she had gone into the hospital in her nightgown and I didn’t want her exposed to the extreme cold. She needed warm clothes and a warm ride. When I called to check on the discharge process, she was talking to someone from rehab, so I told her I’d be there in a couple hours and rang off. Experience told me that when leaving a hospital, it would take hours for every department to sign off so I didn’t hurry. As long as the nurses knew someone was coming everything would be good. Sitting down with my cup of tea, I asked myself, why was I doing this? Why was I working so hard to make it to the hospital as the snow kept coming down? It had occurred to me as I was lifting that final heavy shovel full of snow that no one would do this for me. My husband would find a way to get me home, make no mistake, but he wouldn’t shovel out an alley to do it. I have no kids, nephews or nieces or even cousins that would do this on my account. My friends all have problems of their own and wouldn’t be able to expend themselves like this. I pondered on this as I sipped my tea. John 15:13 (NASB) says, ‘Greater love has no one than this, that one lay down his life for his friends.’ I had done this as a sacrificial act of love. While I love my mother-in-law, this was really for my husband. He’s been stretched as thin as I’ve ever seen him between long hours at work and caring for his parents, and though I’ve been doing a lot to help and I love them, too, I don’t have the same history or memories that he does and I’m not grieving the same way he is. This was a laying down of time and effort to show my husband he is not alone in his care journey for his parents and to bring him encouragement. Sacrifice. It makes life richer. I should do it more often. 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. 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 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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