It’s 5:30 a.m. and the phone is ringing again. Mike is so exhausted he doesn’t hear this time and I don’t hear his sister stirring, either. This is an answer to prayer because I want them to be able to rest. I get up to take the early morning shift. I’m not quick enough and the answering machine is getting it, but I’m not concerned. It will ring again and as I reach the bottom of the stairs, it starts. I’m thankful he’s forgotten about the cell phones. Mike’s is in the bedroom and it’s jolted him awake several times already. “Hello?” I answer. “Uh, well…uh, is this Mike?” “No, Dad. It’s Donna.” “Can I talk to Mike?” “No, Dad. It’s 5:30 and he’s in bed. He needs to sleep and I’m not waking him up.” “Oh. Uh. Well, do you have a minute?” “Yes, Dad,” and I sit on the stairs. It will be a while. “I’m completely bewildered. I can’t find Anne.” “No, Dad. She died.” “Who died.” “Mom died.” “My mother?” “No, Mike’s mother. Anne. Your Anne has died.” “My mother, Anne?” “No, Dad. Your wife.” His mother’s name was not Anne. “My wife?” “Yes.” “How did that happen.” “Her lungs wore out, Dad.” “Where was I?” “You were holding her hand.” “Here in the house?” “Yes, Dad, the apartment. You were holding her hand, I was reading the psalms to her, and Mike was stroking her hair.” “Did she suffer?” “No, Dad. It was peaceful.” “Why can’t I remember?” “Your memory has been bad for a few years, now.” He will accept this from me. He called Mike a liar last night. “I can’t remember any of this.” “I know.” “Is Mother with you?” “No, Dad. She died.” “Was there a funeral?” “No, Dad. It will be Friday.” “What day is today?” “It’s Wednesday.” “What should I do?” “Go back to bed, Dad.” “I found a note here. Did something happen?” “Mom’s gone, Dad.” “I have to go get her.” “You can’t, Dad. She’s died. We’ll have a private viewing today. Your daughter came to town yesterday and spent the day with you and we’re going to go see Mom one last time.” “When?” “At 11 o’clock.” “Will I go?” “Yes, Dad. We’ll come get you.” “Has there been a funeral?” “Not yet.” “Has something happened?” And on it goes for another five minutes or so. Suddenly he’s done and hangs up. I go to make a cup of coffee and clean up the kitchen a bit. The phone rings.
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It was Christmas morning in the sick house. I’d been ill for days with no relief in sight and it looked like Mike had come down with this virus from hell as well. Dad was moved to memory care and was not doing well and I’d yet to go over to visit. We had to clear out the old apartment within a month but I could barely get out of bed. I did not send out Christmas cards, I did not finish my Christmas shopping, I had not made any meal preparations, and frankly had no desire to eat. I was watching the Nutcracker the night before and thought of calling my mother-in-law to tell her it was on when I remembered she was gone. This was possibly the worst Christmas ever. I know for sure it was the worst one for Mike. My own mother made Christmas a nightmare until she disconnected from me for a blessed decade. Up to that point, I would go into the season wondering what sort of mayhem she would create. She never failed to disappoint. As a result, I don’t have high expectations of the season. I don’t have children or grandchildren to lavish gifts and time on, the family I do have left is greatly diminished, and due to caregiving I have no spare time for volunteerism. The church I was attending decided to close, and even if I had a place for a Christmas Eve service (and there are plenty to choose from in this city of churches) I am too sick to participate. These thoughts caused me to wonder if I could remember a good Christmas. I had to go back to my childhood when I was living with my grandparents. Christmas eve service at midnight and as we left each child would get a box of candy. There was always one really good piece of chocolate in that box. The night would be quiet and crisp and the car would be warm as we drove home. This was in the days before car seats and I could lie stretched out on the back seat looking up at the stars as Grandpa drove. The next morning the tree was up and presents were under it. Grandma had been baking Christmas cookies for weeks and now we could have as many as we wanted. The house was filled with the aroma of food cooking. Mom had driven in from Detroit and we were all together. Grandma kept things on an even keel, but once she was diagnosed with cancer, things went downhill and Christmas was never the same. This virus that I’ve been railing against is actually a gift. It’s made me stop to consider where I am in life. I’m coming toward the finish line. Who knows how many years we have, but I’m definitely past the half way mark. My mother-in-law is gone, and I suspect my father-in-law will die of a broken heart. He’s 95 with Alzheimer’s and can’t find his wife. My time as a caregiver is drawing to an end for now. It is time to plan on making good memories. Happy New Year. One day last week, I was sitting at my computer checking my email and observing the beautiful autumn sky through the windows. I was enjoying a leisurely morning and contemplating making a cup of coffee or tea when my cell phone started ringing. After locating it and digging it out of my purse, I answered and my mom-in-law asked if I was on my computer. “Yes, Mom. Why?” “Oh, I’ll have to wait until you get off then.” “Why is that?” I asked, thinking she didn’t want to interrupt me. “Because you’re on my network and I can’t get on my computer.” “What?” This conversation was not making sense to me. “I get a dialog box whenever I start up the computer that says there are too many users on my network, so I’ll wait until you get off.” “Mom, we aren’t on a network.” “Yes, we are. You have my computer linked with mine, remember?” No, I didn’t remember because that wasn’t the case. She continued, “I have a little box that keeps asking me for my password.” Now I was beginning to wonder if she’d been hacked and someone was fishing for information. “Mom, we aren’t on a network. Our computers aren’t connected in any way. It sounds like your computer has a problem.” “Can you come fix it?” I looked at the clock, trying to calculate if I could make it there, look at the computer to diagnose the problem and still make it to the other side of town in time to pick someone up. The leisurely part of the morning was done and since there wasn’t enough time, I squeezed in a stop there before she went to lunch. While I am the most computer savvy person in my family, I am by no means a tech guru. My prayer as I went up to their apartment was for a temporary spiritual gifting of tech repair. As I looked over the situation, I realized that Mom had been convinced that since her computer is covered under my name at the repair shop, that we were on a network. She had worked out while I was driving around that that wasn’t the case and was apologizing. She is aware that her memory is starting to slip and is fighting it as much as she can; there is an unspoken understanding between us of what is going on. I sat at her computer to assess the situation. Somehow, it was starting up in the administrator window rather than a user window. Back in the day when I took a slew of classes to learn how to use different softwares, the instructors hammered it into me to never go into the administrator window. Don’t go into it if you don’t know what you’re doing. It is good advice. However I did it anyway. By the grace of God, I was successful in navigating around to get her back up and running, connecting to the internet and able to check her emails. A small miracle to encourage me to keep going. And then, two hours later, another call. “My hearing aid has broken into two pieces. Can you come and fix it, or take it to the hearing aid place?” Here we go again, with more prayer and more miracles of grace. These small miracles encourage me through this journey and I am grateful. In August, I shared that I was finally coming to grips with the fact that life as I had known it has changed forever. There is no going back, nor picking up where I had left off. While at some level I already knew that, it was time to just face it squarely and plot a new course. This doesn’t mean ignoring the needs of Mom and Dad. We’re committed to being there for them come what may. However, I had made my schedule so flexible and so available to accommodate whatever might happen, that I’ve failed to care for relationships or myself. I’ve failed to refill my reservoir for far too long. This has required some thinking and soul searching. One area in need of change seemed to be my job situation. I need to work at least part time to pay my studio rent and the small business I work for had laid me off for eight months. It seemed it was time to look for employment that would work around my caregiving needs and art schedule With those things in mind, I began searching. Of course, as soon as I applied for a position I was called back to my job. Since it has very flexible hours and works around my caregiving needs, I’m staying there. At least for the time being. Another area that needed to be addressed was being connected with community. To that end, after much prayer I’ve started a twice monthly gathering of artists of faith. People who use art as worship and prayer and are looking for a community that will join together in fellowship, and prayer. Not only inquiring of God, but listening for an answer. It has been far better than any of us had hoped and we all look forward to each meeting knowing that God will show up in prayer and in art. I’ve also started attending a church that is closer to my home which connects me to my own neighborhood. Another effort to expand community has been to join Bible Study Fellowship, studying the gospel of John. While it’s a good spiritual discipline, I can already see it’s not a good fit. While I will complete the 30 weeks, I doubt I will do it again next year. But that’s the whole point - to try new things and see where it will lead. We're also considering raising a puppy for Paws for a Cause. Expanding our interests and connections. Mike and I have been trying to be more intentional about spending time together with mixed results. A couple weeks ago we took a vacation day and went to the state capitol to be tourists. It was a fun change of pace, walking around Lansing on a lovely autumn day. However, the next day Mom went into the ER for breathing issues associated with congestive heart disease. The next few days after that were spent trying to get her and Dad back on an even keel. We were back to our old ways in an instant. Mike was going one way, and I was going another. Cancelled appointments, and meeting with support staff. Life is a work in progress. When I stopped everything to care for my mother, I assumed life would pick up where I had left off once she was gone. I don’t know why I thought that, but it did help me get through some of the trying times of that journey. However, after she died it was difficult to find my footing. For one thing, I needed to to recover from the exhaustion and the weight gain of over thirty pounds from stress eating. For another, I was walking with a cane from an injury I’d had the year before. Physically, I was a wreck. But most of my inability to move forward was due to emotional fallout, so I decided to be kind to myself and do whatever might be necessary to heal, recover and just breathe for awhile before taking on any big projects. It was a good plan, but we quickly realized Mike’s parent’s were beginning to need far more support than we could provide from across the state. The process of moving them closer began and my role of caregiver evolved into something new. At this writing, I’ve been an elder caregiver in one way or another for over a dozen years. Looking toward the future, there will be others who will also need me to be in their life for some sort of caregiving support. I’ve come to the realization that I’m going to be in this role for the rest of my life. That is a sobering thought. Flipping through an old undated notebook I found something I wrote that expresses my thoughts right now. “God is always at work…eventually, there will be a crisis of belief. Major life adjustments are needed.” Caregiving is not going to end. Life is never going to be the way it used to be. Major adjustments ahead. Last week, I stopped in at my in-law’s apartment. The temperature outside was in the 90s but when I went into the apartment, the air conditioning was turned off. Mom had a sweater on and was bundled up in a blanket. I don’t know how Dad can stand it. As we sat visiting, I was sweltering in my shorts and tank top but she couldn’t get warm. She told me she’s reached the point in life where she will never be warm again. As we see each other day by day, I don’t really notice these changes. But when I come into a stifling apartment to find Mom freezing, the reality that she is not doing well is unavoidable. It gives me a momentary pause - we won’t have them for ever. It hits me suddenly and I am saddened. But there are things to do and needs to be met, so I marshal on. Later, I sit in my studio in a fog, staring out the window. The fulness of our situation hits me once again and I weep. Is it really any wonder why I can’t create? Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward. Kurt Vonnegut
It’s been an interesting week. Mom was scheduled to have the battery in her pacemaker changed. It’s an in and out procedure. Still, with a 94 (soon to be 95) year old woman with other complications, you can’t be too careful. Since Mike is the one with legal power of attorney over any medical issues and is really the primary caregiver, he took the day off work to take his mom and dad to the hospital. She had to arrive by 11:30 a.m. which takes a lot of planning and help. Comfort Keepers need to have her up, dressed and ready, the medical transport has to be planned in advance and Dad needs to be kept on track. The surgery was scheduled for 1:00. She was prepped and ready to go. Unfortunately, a power outage occurred so she was sent home and rescheduled for the next day. Now if this happened to me, I could easily get dressed and be on my way. It would be only a minor inconvenience. Not so much with an elderly stroke victim and her husband with dementia. Getting dressed takes a lot of effort and assistance. Getting home takes a call to Ambucab. Meals have been missed and the parents need to be fed. Then, all this has to be rescheduled for the following day and Mike needs to take another day off work. No one is at fault. These things happen. You certainly want everything functioning well for even a minor surgery. But it is disheartening. The good news is Mom did get the procedure and she is doing well. Instead of just changing the battery, they gave her a brand new unit. At the end of the day we are very grateful for medical care, for insurance to cover it and for having Mom a little while longer. First of all, before I get to the main part of this blog, I want to congratulate Shelby, Cindy and Mary for acquiring an etching for their art collection. There are six more prints left if you are interested.
And now, about Julie... Mom’s cat is dying. Julie (the name of said cat) is a rescue. Mom took her in 18 years ago, add at least a year onto that and the cat has been on this earth for almost 20 years. That’s a good life for a cat. Mom is determined the cat will live so for at least a year, Julie has been getting insulin shots twice a day. Since Dad can’t remember and Mom can’t use the left side of her body, guess who does that? Actually, Mike does it most of the time. He gets up early and before work, drives to their apartment and gives the cat her shot. Then again after dinner. I fill in when needed. I think Mike wants to do as much for his parents these days as he can. He’s always been a caring and thoughtful son, but he knows his time is running out and he wants to make it all count. He’s wearing himself out in the process. A couple weeks ago, Julie started having convulsions. Dad called and one of us took her into the vet. I don’t remember if it was Mike or me because there have been several vet visits in the past few weeks. Julie has stopped eating. Her blood sugar levels have been fluctuating wildly. Not only does she have diabetes, but now she has congestive heart disease and the medications are making her nauseous. Mom does not want to face the future without Julie. Again, I take her to the vet. Is there anything else we can do? Now, in addition to working and elder care, we are going over three times a day to hand feed (read that force feed) the cat with a syringe on the very off chance that with enough food in her, she’ll take her medicine and with the medication her strength will increase so she’ll last another year or more. Part of me just shakes my head. The cat is failing, let it go in peace. But Mom has hope, and hope is important. I look at how Mom’s life keeps closing in on her. She can no longer walk, getting out and about isn’t impossible but it’s pretty darn hard. Most of her friends have died and Dad’s dementia makes it hard for her to form new friendships. But she does have her cat. With that in mind, Mike and I do our best to make the animal as comfortable as possible and pray for the best for all involved. Postscript: Sadly, on September 14, Julie died. Mom is doing her best to deal with yet another loss. Recently, I met a group of co-workers for breakfast. One in particular had a need to vent but at the end we all agreed it was not about her, it was her expectations and she needed to let it go. Less than two hours later, I found myself in a similar situation. In caregiving, I had certain expectations but people who were more affected had different expectations. In fact, there were four sets of expectations and three of us had to let ours go. You would think that with over a dozen years of caregiving experience – my mother with Alzheimer’s, someone’s else’s mother with cancer in hospice care, my husband recovering from injuries, and my in-laws – I would have everything going like a well-oiled machine. Alas, no. The truth is, the biggest obstacle to my peace of mind is myself. When I first stepped into caring for my mother, I was at a critical juncture of my art career. I’d accrued a long list of shows and awards, had news articles written about me, and had my work mentioned a couple times in an art magazine. I’d been in some prestigious regional and national shows and had had two person and one person shows in some pretty good galleries. My main gallery representative was urging me to start focusing on the east coast. I chose to put that aside with the thought I’d be able to pick it up again in a few years, but as each year passes it’s increasingly obvious that I have to lay down all those dreams and expectations. If I want the same sort of career I had, I will have to start at the very beginning again. I don’t know if I can or if I even want to. Nonetheless, letting go of those expectations is a constant struggle. It involves a certain amount of grieving as you face the death of a dream. I’ve been postponing that grief for some years, but I think it’s time to face it head on. Art has changed significantly for me and it’s time to own that. Only by letting go can I find my way again. The key turns, the door opens and I step into the studio. How long has it been? One week? Two? More? I honestly can’t remember but the plants need watering. It’s obvious I was hopeful of returning soon when I was last here. My palette is laid out, colors mixed and all is covered with a sheet of thin plastic to keep the paint fresh for the next day. To no avail. I find the paint scraper to clean off the glass, but I don’t have the heart to put out new paint. Instead, I study the photo of the model and analyze the drawing. In the last painting session, the values improved but I once again drifted off in measuring and have to re-draw and make adjustments. I sigh. Will I ever get these paintings done? I was so excited when I was first contacted for this project. So much so, I volunteered to do two portraits rather than one. Another sigh. I turn my attention to the plants. I can do something about that. Finding two gallon jugs, I make the trip down the hall for the janitor’s closet. I forget to take the key with me, so it’s the restroom sink instead. Back in the studio, I see the poinsettia is blooming and I rotate the pot. I notice one of the plants is looking quite bleached out. The full light is too much for it and I need to move it. I’d moved the small palm the last time I was here and it’s much happier in its new location. I give it a drink. The plants are not too bad off but the water soaks quickly into the dry soil and shortly the greenery perks up. When was the last time I watered my soul? I’ve been so busy dipping into my spiritual reservoir to give to others that I’ve failed to recognize it has run dry. Sorrow upon sorrow fills my life right now. Watching my in-laws slowly losing ground, a friend entering hospice care, another friend’s husband with only a few months to live…one emotional weight after another creating a desert in my heart. Rather than spend time trying to paint when I’ve nothing to say and no energy to say it, I decide it’s time for quiet meditation to tap into the Living Water and refill my spiritual well. I select some CDs that currently speak to my heart and just soak it in as I quietly sit in the studio. It’s a struggle to still my mind – there are so many things that need attending to. But I’m worth fighting for, so I stay with it. Hebrews 4:11 comes to mind. It is labor and diligence that helps us enter into rest. It takes about 20 or 30 minutes to finally settle my mind and get to a place of prayerful meditation. While it is time well spent, when it is over the issues of life come crowding back in. It seems the well needs more time being filled. Time I don’t have in this season of life. But it is a start and I now recognize the need. But I am so weary. |
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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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