Well, maybe it’s you…
I had to break up with Mama J, just a little bit. I’m sure there is some kind of official name for this — caregiver syndrome, or something like that — but the day I cracked was Hallmark Ornament Day, aka Big Deal Day 2016.
Each year, Mama J buys Hallmark ornaments for friends and family for Christmas. It’s not really my thing, but so much love and care and thought goes into it that it’s become quite meaningful, both for donor and recipient. It works something like this: the customer gets a “wish book” and places his or her order months ahead of time. Then, in early to mid-July, the ornaments come in to a local Hallmark store. This is a Big Deal of a day in the Hallmark ornament world.
So Big Deal Day arrived, and my job was to take Mama J to the Hallmark store to pick up her ginormous ornament order, and then we would go back to her apartment, take everything out of the boxes and ooh and aah over them, then repack all of the ornaments. The first part of this went off without a hitch. It was even kind of festive and fun. The Hallmark store had a photo booth of sorts, and snacks, and lots of excited people picking up their ornament orders. Mama J carefully checked off her two bags of ornaments against her list, had me push her wheelchair around the store while she added a few more items to the pile, and checked out her small fortune’s worth of ornaments.
All finished, we loaded up in the car and headed out. Then, Mama J wanted to go to the post office. This was totally fine; she had everything ready to go, and we got through it relatively painlessly. Now, please understand that Saturdays (did I mention it was a Saturday?) are pretty sacred to B and me. We go run in the morning, have breakfast, and then settle into the business of errand-running and spending precious time together since it’s really our only day that we typically have to ourselves. So, since Mama J and I were on our big Ornament Day adventure, B and I had postponed hanging out, but we did have a much-anticipated lunch date.
Back to the post office. Mama J and I finished up, and I had started pushing her wheelchair back to the car when she said, “I need to go to the grocery store.” I can’t explain what happened next, really, except I felt everything in me go absolutely flat. I didn’t know whether to cry or yell at her. I was filled with both anguish and anger. I know that seems like a perfectly reasonable and appropriate request, to go to the grocery store in the midst of running other errands, but I was suddenly stricken by the fact that I had allotted a certain amount of time on my Saturday, and now Mama J wanted more of it, and I just didn’t think I could give any more. For the past eight or nine months, I have given and given and given — every spare moment I can spend with her — and this one simple request was just too much.
My voice trembling, I said, “Mama, you’re going to have to help me.” Instantly concerned, she asked what was wrong. Somehow, I managed to choke it out. I know this is hard on you. I know you don’t get to go out much and when you do, you try to make it count. But I’ve allotted a certain amount of time to these errands. I have a much-needed lunch date with my husband. I can’t go to the grocery store and ooh and aah over ornaments. We’ll have to choose the grocery store over ornament unpacking.
I felt awful. I felt like the worst human being on the planet. I stood my ground, and it made me feel incredibly selfish and small. My feelings were hurt, and her feelings were hurt, and we somehow got through the grocery store and back to her apartment, and I went off to my lunch date, and she sat there later and unpacked and labeled the ornaments all by herself, and we never spoke of them again. Even now, writing these words, I can still feel our mutual pain in that moment.
But I have “broken up” with Mama J a little bit. I have let her sitter’s role grow a bit more, getting Candace to take her to the grocery store and hairdresser. Every once in a while, I don’t see her for lunch or dinner. Some nights, Mama J is responsible for her own medicine and turning down her own bed — letting her do the things she can still do. B and I just returned from a glorious, Mama J-free weekend at the beach, a time to reconnect, to spend time together, to just be.
Despite the difficulty of doing so, I know with certainty that standing up for myself was the right thing to do. I cannot be a good caregiver to Mama J if I am not giving care to myself, and to my own little family, B and the dogs and me. And in the coming months, as things get harder, I am going to do my level best to do both … even if it means breaking up with Mama J every now and again.
PS If you want to read our journey from the very beginning, start here: And Mama J makes 3 or click the blog title at the top of the page.
Next post: Gifts
Last night we pulled into a handicapped spot at the store and I opened the trunk to get out the wheelchair. Mama J said, quite seriously, “Do you think when people see me they wonder why I’m using a wheelchair? Because I don’t look like I need a wheelchair.” Um, ok. Glad for the positive attitude, but remember when I told you I was afraid to take you out in public because it looked like I was beating you and starving you to death? 😂😂😂 Stay tough, Mama J! Leftover photo from Memorial Day.
Next post: It’s not you …
This weekend, B, Mama J and I ventured off on a road trip to New Iberia for a Father’s Day with B’s family. The trip proved to be harder on all of us than anyone could foresee.
For Mama J, I think, the strain of traveling, especially on the heels of a long visit with her friend from Missouri, manifested itself in fatigue (falling asleep at the dinner table), crankiness (bossing me around like nobody’s business or yelling STOP at the top of her lungs and scaring everyone half to death so that she could take a picture of Brian’s dad in his new shirt from the grandkids), confusion (back to writing double letters like “cucucumbers” or “teaspoonoon”), and inappropriate conversation in front of the grandkids (about breasts or washing private parts). Then she didn’t speak at lunch on Saturday at all, not one word.
My stress arose from trying to tend to her, fending off her crabbiness, worrying about whether she was okay, and still attempting to have a pleasant visit with the rest of the family. And in the wake of seeing me being distraught, Brian was getting more and more frustrated with her. He can’t stand it when she bosses me/us around (“We need to go to the store” or “Did we remember to check the mail?” instead of “Could you please go to the store for me?”), doesn’t respond to questions, or refuses to display any kind of happiness for us about the happy things going on in our lives. And it drives him crazy that my brother Mike (sorry, buddy) is her golden child, while I’m busting my fanny to help her and getting criticized for every little thing I do wrong. After we had gotten back to Baton Rouge, dropped her off, gone to the store for her, put away her groceries, and gone home, all of these multiple stressors resulted in unkind words passed between B and me, I’m ashamed to say, later forgiven by both parties.
All of that is to say that emotions were still running a little high this morning when I got a call from Mama J about her morning caregiver. Did someone call you about a change of caregiver, she wanted to know? A strange lady had shown up at her house this morning. Nope. So I looked on her caregiver calendar, and lo and behold, there is a new person listed, beginning today, as her permanent caregiver.
After a number of phone calls back and forth to the caregiver service, I finally learned that Cynthia, Mama J’s apparently former caregiver, had requested a new assignment closer to her home. I understand completely. Who doesn’t want to save on gas and time? But no one had bothered to tell us. And Cynthia had not told Mama J that she was looking for another client.
Let me just say that Mama J loved Cynthia. I get that it’s a paid professional relationship, but Mama J viewed Cynthia as a friend. Mama J doesn’t make friends easily, and Cynthia was a special part of her life. She cared about Cynthia. They laughed together, every single day. They bossed each other around. Mom baked a cake for Cynthia’s grandson’s graduation. She sent cookies with Cynthia for Cynthia’s other client, a man who had taken to asking about Mama J just as she did about him. She was happy, and so very grateful to have found such a gem. It was a community. It was personal.
But it’s also personal that the agency didn’t tell us about the change (an employee has since called me to take blame and apologize) and even more so that Cynthia didn’t have the nerve to tell Mama J in person. Who does that? I have been in tears all morning about this. Mama J might be a crabby, bossy, difficult old lady sometimes, but she sure as heck doesn’t deserve to get treated like this.
Now I get to go to her house at lunch and tell her a lie, that Cynthia was reassigned, because I can’t bear to tell her the truth, that she was evidently “just” another client … and it wasn’t personal after all.
Next post: Positive attitude
I realized today that I had not posted anything in a while, and it set me to wondering why. I had a disconcerting revelation. I started my blog as a way to work through the emotional stress and distress of caring for my mom, and it has been a great mechanism for that purpose. So why haven’t I felt the need to blog, to release those emotions? What has changed? The answer is: nothing.
There is nothing really new or extraordinary, either in her health or in the level of stress I feel. Mama J continues on a steady and slow decline. The slightest exertion leaves her trying to catch her breath. We had to leave Mass Sunday evening because she wasn’t feeling well; we had tried to do too much during the day. Mama J has stopped wearing regular undies, replaced by absorbent adult ones, just in case. My brothers and I signed papers authorizing her cremation the other day, and the funeral of a colleague’s mother and the death of another friend’s mother, both from the same illness–not the COPD that Mama J has, but a lung illness all the same–left me heartsore and drained. I struggle to balance all the parts of my world: marriage, exercise, healthy eating, work, friendships, church, Mama J’s care.
Notice anything there? That’s a lot, you might say. But here’s the thing, the revelation I had: this is our “normal” life. I have stopped seeing it, treating it, as anything out of the ordinary. It has become our normal.
What does that mean? I broached the subject with B last evening. Does this mean that we are no longer affected, that we have adjusted and are taking everything in stride? Or does it mean that we constantly operate in a state of heightened anxiety, in crisis mode? He suggests that it is the latter, that we have just elevated our level of stress to the corresponding decline.
I’m not complaining, not by any means. I’m grateful to have had this experience to be of service to Mama J. I still have my mom, while the two friends I mentioned above, and many others, do not. But I miss the easiness of my life before November, our “old normal.” I’d be lying if I said I didn’t.
Next post: “It’s personal.” Or is it?
Periodically I’ll see one of those memes on Facebook or the web that reminds us to be patient with others, whose personal difficulties may be undetected:
This one in particular comes to mind: “Everyone you meet is fighting a battle you know nothing about. Be kind. Always.”
I’ve been focused on my own family’s struggles (understandably, I think; I’m not going to beat myself up about it) pretty much since the first weekend in November. If you’ve been following along, you know the peaks and valleys, and the plateaus, one of which we are in right now.
But today I’m reflecting on so many people I know and love who are dealing with their own hardships — my dear friend Courtney’s parents in Shreveport who are facing the aftermath of complications from an extensive post- open-heart surgery hospital stay (her dad) and now bronchitis and pneumonia (her mom). Another sweet friend whose stepdaughter is in treatment for an eating disorder. My wonderful in-laws, who are on a journey parallel to ours with my husband’s grandmother. My amazing stepmother, Denise, who will undergo reconstructive surgery this summer in the aftermath of a breast cancer fight. A running friend whose dad has dementia. Still another who is caring for her dad, who is recovering from a stroke.
And there are not just hardships with the failing health of aging parents. A lovely young woman suffers from debilitating anxiety. A layoff extends into several months of joblessness. A mentally ill father is jailed for domestic abuse. A daughter is in remission from cervical cancer.
So many people I know are touched by tragedy or trouble. It’s life, isn’t it? We return to the earth, and sometimes we suffer a little or a lot along the way.
Yet the joy in all of these difficulties comes shining through the clouds of despair and hopelessness. I’ve written about this before. It is that sense of community we share with one another — a phone call made at just the right moment. A card arriving in the mail. A hug or word of kindness. An offer of help. A meal.
In his essay “The Body and the Earth,” Wendell Berry writes that “Healing is impossible in loneliness; it is the opposite of loneliness. Conviviality is healing. To be healed we must come with all the other creatures to the feast of Creation.”
I am so very grateful today for the community that supports my family in the continued healing from the Adventures With Mama J, and in the healing that is yet to come. In turn, I am trying my best to do my part to be a part of others’ community as well, as we all come together to the feast of Creation.
Next post: “I used to have nice legs.”
This is what we moved Mama J down here for. This rushing to aid after yet another fall. Wiping Mama J’s back and bottom to clean where she peed after she fell. Letting someone else cook her breakfast. Working with a team of aides and nurses and social workers and bath ladies and medicine deliveries.
When she moved here in November, we’d spend all day working on a project. She’d accompany me to run errands all day long, tag along for lunch with friends. We’d eat dinner and play a game of cribbage before B and I went home for the evening. It was nothing to be gone for several hours during my day off with her, and we’d get back home, tired from the long day but happy at having spent the time together, mother and daughter, pals.
In the space of not even two weeks, Mama J has fallen twice, hitting her head and ripping a deep swath of skin from her forearm. She has battled an upper respiratory infection that had us calling the emergency nurse late one evening. She has stopped her morning routine of puzzles and newspaper reading. She laments her lack of interest in or ability to work on a project but is powerless to do anything about it. Mostly, she sleeps. The confusion has returned, and yesterday included a series of unintelligible text messages and her thinking it was Saturday (it was really Wednesday) and asking B why he hadn’t asked her to attend Mass with him. She spent nearly 30 minutes last night trying to get into her computer before giving up in frustration. At lunch yesterday the nurse told me that while it is great that Mama J is still mobile and not bed-bound, she is in rapid decline.
This is why we brought her here. Now the real care begins. But I miss her already, the sassy and vibrant Mama J that took a two-day road trip with me back in November to start — and end — a new life.
Next post: Perspective
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