Epilog

It’s over, for now. I’m home alone. I no longer have to tiptoe around my house at night, or early in the morning, or in the afternoon when Dad takes his naps, the ones he swore he doesn’t take. The contractors will be here at some point to put the house back together. I told the therapist I would start with him again, but I don’t want to anymore. I do want to keep going to my Alzheimer’s support group. And start seeing my friends again.

I hope Dad brings a structure to my brother’s lifestyle, and that this time together is helpful for both of them. I sent an email to my younger brother, wishing him well and hoping he comes around. I’m going to visit my mother this weekend. I want to see what progress the farm workers made on her property and how the land is healing after the fire. I’ll go early because I’m going to check into the hotel later. This is me letting go of my family, but staying connected. Life is full of paradoxes.

I’m going to start going to my writers workshop group again, even if I don’t take anything to share. I’m going to start practicing piano again. Care for my gardens. Get back on my yoga mat. Do what I can to create as many neural networks in my brain so that when I lose a few, there will be enough redundancies for backup. I don’t know if I’ll keep updating this blog, but I’ve enjoyed documenting my daily life. Maybe I’ll start making Dad’s purple juice as an experiment, and document how I feel each day. I’m sure he’d appreciate that.

I’m working a half day today. The spring rains will arrive and my gardens will be happy. I’m going to do some deep cleaning next week. I want to buy fresh cut flowers for all my vases. I think there may be a few more cold nights coming, so I’ll delay planting my flower seedlings a few more days. Maybe next weekend.

I tried to use Dad’s credit card yesterday and it was denied. I asked about the other credit cards in his wallet and he said my brother cancelled them, but that he intends to reinstate them when in his apartment on his own. At the Alzheimer’s support group I was reminded to freeze Dad’s credit so he can’t get any more cards issued, and I learned about True Link Financial, a kind of parental control for credit cards…I quickly passed that information onto my brother. Later I called my mother when the farm workers texted me that she hasn’t yet paid them for the work they’ve already done. Sometimes I wonder why I even bother helping either of them. I know, because it’ll eventually be my problem, so I’m trying to mitigate risk. I’m doing the best I can.

My parents did the best they could. They weren’t perfect, not even close when it comes to emotionally nurturing their children, but I’m okay. I have integrity, I have friends. And, the older I get, I have less judgement towards others or myself. My parents couldn’t have messed me up that bad. Now, in their final chapters, I have the chance to help them, as much or as little as I want. It’s not just an opportunity to give back, it’s a time for me to heal. When I give of my own volition instead of obligation, I’m demonstrating conscious choices to myself. When I can practice saying “No” – not all the time like my younger brother, but where I know my limit – I reinforce my sense of boundaries. I can carry that through the rest of my life. I can show myself my ability to protect me. By protecting myself, I create a space to heal. I still don’t know where healing comes from, but I do know that healing helps the pain fall away. Then, where pain has decomposed into fertile ground, forgiveness can grow. In this protected space of blooming forgiveness, I feel whole again. As a whole person, I am free to embrace the world without fear or shame. I know this isn’t a linear process, rather it is ever evolving, and takes time.

I’m ready for a break, from being a caretaker, and from this blog. I’m going to go live a little in this new garden space I’ve carved out for myself. I’m going to plant new seeds and practice all these things I’ve learned.

This day last year I was saying goodbye to my sweet doggie, just one month short of her 14th birthday. I hadn’t slept for two nights and had barely eaten in three days. I spent the night on the floor with her, humming Amazing Grace whenever she stirred. We were waiting for the vet to come and administer euthanasia. Two friends came over to be with us when she died. I wonder if they’ll remember this day. Since then I have framed many photos of her and smile when I see her furry face all over my house. I’m sad she’s gone, but I’m at peace. Being at peace is not easy and requires a lot of emotional work. It’s hard to do emotional work alone.

I have my Alzheimer’s support group today. So many updates to tell. So many updates to hear. When I hear stories of adult absorbent underwear, or husbands following their wives around the house like puppies, or belligerent men who insist they can still drive, or catatonic mothers, I realize Dad’s cognitive decline is fairly mild. Still, he lost hundreds of thousands of dollars before my brother and I could intervene. Money equals choice. More money, more choices. Dad has little of both.

My brother called yesterday. He’d spoken with one of those senior living brokers and they were willing to meet and “assess” Dad as soon as we got there with the intention of moving Dad into an assisted living facility ASAP. I took a deep breath (paused) and explained to my brother the importance of trust in navigating decisions with Dad. I reminded him that his expectations and Dad’s expectations were on opposite ends, that Dad is expecting to live independently. Getting to the middle ground will require patience and trust from both of them. Making decisions now, before Dad gets there, would not be aligned with either. I didn’t tell him what to do, but I did suggest that both he and Dad slow down and spend some time with each other. I told him how, at the lawyer’s that day, Dad was willing to let me direct him where to sign. I explained this was due to the last month of patient work, of not flaming Dad’s anxiety about the future. I think I got through to my brother, but only time will tell. We are all on our own paths.

I look forward to the day when I can openly speak about this experience of caring for an aging parent with cognitive decline. There’s so much stigma and secrecy around dementia and Alzheimer’s. I don’t want sympathy (I can find it in the dictionary) or admiration. I don’t want to “protect” Dad from what everyone is thinking or saying about him. He never did. I would like honesty, even curiosity. Maybe some compassion. At some point, I imagine everyone will be touched by cognitive decline, whether it be a loved one, or themselves. The more we talk about it, the closer we get to acceptance, and the better we all will be.

Dad and I planted herbs in my garden yesterday. He has dreams of making his own garden. Three years ago he had ten acres of fruit trees, vegetable gardens, grape vines, and fish ponds that he cared for. I feel so sorry for him. He worked so hard, and it’s as if nobody cares. I think nobody cares. In this life of living in my guest room, Dad continues to find his own joy everyday. I imagine I would be depressed. But Dad really does live in the moment. He actually lets go of the past, accomplishments and failures. For these past months, he’s wanted to reminisce, telling me stories of his childhood, of the things he’s proud of. I usually can’t find the energy to reply with the kind of enthusiasm a parent would show a child expressing their pride, but I always listen. At dinner yesterday Dad commented on my slowly blooming amaryllis, comparing it to a hibiscus flower in his youth that he drew and for which he won second place in a school contest. I nodded, and added that amaryllis is more closely related to the lily, as are orchids, like the ones we saw at the botanical garden. He was quiet for a moment then said that my cousin’s wife would know. He put his fork down to ask me, “You didn’t study botany, did you?” I shook my head and put another bite of food in my mouth. I have three degrees, all in the sciences.

As much as I’ve done these past few months, my brother will have the hardest job – moving Dad into a nursing home. Today we go to the lawyer’s to sign all the forms. Last checkbox on my list. Then I just need to get him on the plane, with all his luggage. I don’t think I’ll exhale until I get into my brother’s car.

I’m comfortable doing all the things I’ve done for Dad. I’m also okay not being any kind of emotional support for him. I’m not built that way.  I’ve done what I can, and I’m at peace with it. I visit my mother regularly. I do her shopping when she needs it, I’ve found help for her to manage the property, and I communicate regularly with her, by phone or text. I’m also comfortable with what I’ve done for her, and am at peace saying “No” when she asks for more. I’m looking forward to returning my focus to my own life, nurturing my plants and relationships. I’ve changed. I’m a little more mature. I’m a little less angry. I’ve stepped back from my insular perspective and am willing to consider a bigger picture. Instead of projecting my own, I’d like to be more curious about other’s.

I feel less inclined to give my time and attention to people I don’t want to. Not every comment deserves a response. People can figure things out for themselves. There is nothing wrong with keeping myself at the top of my priority list. I owe nobody anything. Except myself. I owe my body nourishment and exercise, and my mind creative stimulation. Studies have shown that it’s not minimizing stress that lengthens one’s life, rather managing it and using that stress to level up. I’ve learned so much these past few months. It’s been hard, but I think I’m a better person for it. Still, I’m glad it’s almost over.

I asked Dad to start repacking his things. If he can’t get the Vitamix and his juice glasses to fit, I need to ship them. I would rather ship them, knowing that UPS will pack everything properly to prevent anything breaking, but Dad thinks he knows best. I remember he helped me pack my things after college, including a beautiful collage of a poster and photos framed by my roommate. I told him I was worried the glass would break. He dismissed my concern, and it arrived broken. Of course he didn’t care. It wasn’t anything special to him. The lesson I learned was that my stuff, like my feelings, don’t matter. It’s been a hard code to rewrite.

Awareness of my childhood programming has been trippy. I used to think that my choices were all conscious. Instead, I’ve come to recognize the tire tracks, or grooves of my behavior patterns that were carved for me. My parents may have done their best, but as their marriage disintegrated, both felt like parasites on me, pitting me in the middle of their civil war. They disregarded my needs as their child and took advantage of my hard wired need for their approval, and I allowed it. Recently I second guessed our decision to place Dad in a home. I texted as much to my brother and he set me straight. Those grooves run deep. As the middle child and only daughter, I bear a weight that neither of my brothers ever carried. But only for a few more days.

My mother asks me to do things for her that she doesn’t want to do for herself. I typically comply, though with little understanding of how much she has contributed to her own problems. My need to help people, this need to be needed, stems from my parents programming me to abide by their requests, before I can ask myself if it’s something I want or can do. I need to start pushing back. But it’s easy for me to slip back into default mode, especially under stress. I wish I could program myself to hit a pause button before any response.

Perhaps I’m a bit jealous of my younger brother. He extracted himself from our family years ago with no intention of returning. I get it. It pisses me off, but I get it. I still think he’s irresponsible, but I suspect his wounds haven’t healed. He will have bigger problems when our parents aren’t around for him to resolve them. I’m not sure what kind of relationship I want with him in the future. I’m grateful I’m able to confront my childhood programming while my parents are still alive. It’s an evolving process, and having the chance to help them, in my own way, has been healing. I hope that when they die, I will have a restful heart.

This week will go by fast. My cousin and his wife will come for a visit this afternoon. Tomorrow Dad and I will plant herbs in my garden. We sign papers at the lawyer’s office on Wednesday, and I have the Alzheimer’s support group on Thursday.

Dad and I sat together yesterday to go over the legal paperwork. It’s all pretty straightforward since he doesn’t have any assets to distribute. The financial PoA is more of a formality since my brother and I are joint owners of his bank account. It’s the health directives that took time. Essentially Dad had to make decisions now, while he has most of his faculties, about what medical decisions he wants in the future. Does he want CPR? A feeding tube? A ventilator? At 87 years old, it may seem obvious, but Dad has also said he expects to live another seven years. Fortunately he didn’t have any hesitation in his decision. I need to get the same forms signed for my mother.

We went to a show yesterday at a theatre. It was a kind of a lecture. Dad took a nap before we left, but still slept through most of the show. Before the show and on the way home, Dad repeated himself multiple times and I felt well versed in practicing patience. I’m adulting.

At the theatre, I asked Dad to stand up and turn around so we could take a photo with the stage in the background. As Dad was standing there and I was sorting out my phone to take a selfie, a middle aged couple who had the seats in front of us arrived. Dad was holding on to the back of the seat in front of him to keep his balance and didn’t hear the man say “Excuse me.” I didn’t really notice either because Dad wasn’t being intrusive. But the man clearly had no patience and said very loudly, clearly annoyed, “Excuse me!” That startled both Dad and I and Dad apologized, but I was miffed. We took our photo but when I sat down I couldn’t shake the feeling that this middle aged fat white man was being rude on purpose. And he stole my joy out of the moment. I wanted it back, but couldn’t imagine telling that man how rude he was. But then, Dad finished his popcorn, and his plastic glass of water. “I’ll throw it away, Dad.” The man in front had his arm around the back of his partner’s chair, which was impeding me getting past him. So, while his attention was forward, I leaned in from behind, close to his ear, and did my best loud whisper, the kind I might have used in a concert, “Excuse me!” I didn’t wait to see his face because the jolt of his body told me I got the reaction that satisfied my need for revenge. I enjoyed the show just fine after that. Perhaps I still have more adulting to do.

It’s daylight saving day and I’m betting I get an extra hour to myself this morning. I’m counting down the remaining days by the number of glasses of frozen juice left. Dad’s been drinking this juice smoothie combination for the past twenty-five years or so. I’m now thinking there’s something to it. Dad is quite healthy for 87. Even with his late onset Alzheimer’s, he could live in assisted living, if he had money. But back to the magical juice smoothie.. Every two weeks or so I put all this into a Vitamix: kale, spinach, an apple, orange, blueberries, blackberries, green onion, celery, ginger, honey, orange juice, and green juice. As thick as it is, I freeze it in aliquots of three day portions, but then dilute it with more OJ, green juice, and water for each serving. I’m thinking of making it for myself after Dad leaves.

I took Dad back to the botanical gardens yesterday, but this time for the blooming flowers instead of holiday lights. The tulips were putting on an early show. He loved walking around the garden and said he was inspired to take photos that he plans to blow up and put on his walls. At dinner that night, with true excitement in his voice, he began to explain his plans for his two bedroom condo, or house. I couldn’t ignore this anymore and had to step in.

“Dad, please try to be patient. I know you’re excited to be on your own, and we support you being independent. We want you to be safe and comfortable. We’ll all work together to find the best place. But you have to understand that it’s not possible to live the way you did five years ago.” Before I got to that last sentence, he had a look on his face like a kid who was just told he didn’t make the team. “I need to come down a bit,” he said while waving one hand up and down. I tilted my head to one side and nodded. I was too apprehensive to say more so I reminded him that we have tickets to a show on Sunday. “Oh, I thought that was the 13th.” “We go to the lawyer on the 13th.” “Oh, I was confused.” He says that more and more. He’s actually quite comfortable admitting his confusion. I wish he had more money because a SNF is not the right place for him. He would do better in assisted living or living with either my brother or me. But neither of us can afford to care for him full-time. And it’s clear he needs someone full-time. As we finished dinner, I didn’t want to close our conversation with his confusion. “Remember we lose an hour tonight.”

Right now it’s just past 7am DST here and I can hear Dad walking around upstairs. Well done, Dad.

I buy bananas for Dad. Sometimes they go black, at which point I then make a breakfast smoothie for myself – I never waste food. I only buy 4 bananas a week, but Dad doesn’t eat them as fast as I buy them. I usually ask Dad if he wants a banana after dinner. Sometimes he says yes, but sometimes he says he already ate one at noon. Dad never eats lunch. He has breakfast at 9, then tea with snacks at 3pm, and there’s rarely one less banana when he says he already took one. It doesn’t matter. I just say “Okay.”

Yesterday I did my final laundry and bathroom scrub down for Dad. I’ll do it once more after he’s gone. I’d hoped to visit my cousin today, but they have other plans. I don’t blame them. It can be challenging to enjoy Dad’s company. He mostly wants to talk about himself, kind of like an eight year old. There’s a thing called retrogenesis, the idea that as we age, we go backwards, becoming more childlike. Children are selfish with attention. Though some people never grew out of that.

My mother keeps texting me. She knows Dad is living with me, she also likely knows about the Alzheimer’s, and yet she continues to ask me to do things for her every weekend. Being one surrogate spouse apparently isn’t enough. I won’t be able to visit her this weekend, or next. I’m not looking forward to dealing with her as she ages further, but at least then it will be only one parent’s needs.

I’m grateful to have one brother willing to share in caregiver responsibilities. I wonder how he will fare with Dad. I’ve been busy ensuring all Dad’s needs are covered. Dad doesn’t think about preparing his juice smoothie, cleaning his bathroom, clothes, or linens, taking his meds correctly, eating balanced meals, getting exercise, meeting doctors and lawyers. But he does think he can do all this by himself when he moves into a two bedroom two bath apartment. It doesn’t matter what Dad thinks. My brother will have to figure it out. Since Dad trusts him more than me, he’ll be in the right place at the right time.

I’m not a nice person. I’m okay with that. I don’t need other people around me in order for me to be content. I also don’t need to be happy. I’ve learned to appreciate the entire spectrum of human emotions. Sadness paired with a Bonnie Raitt CD and an old fashioned is a beautiful combination. The key is to let go of each emotion, and be open for the next one. I do need to not be responsible for anyone other than myself. I used to think otherwise. People pleasing was my default programming. It took me being truly responsible for another human life in order for me to understand my own conditioning. Program deleted. I’m ready for my reprogramming.

I booked a night out after I get back from taking Dad to my brother’s. It’s a four star hotel near the venue where I got tickets for a show. I’m going alone and looking forward to being pampered for a day. Check in is at 3pm. My plan is to hit the fitness center, clean up, check out the rooftop bar, dinner at the restaurant, go to the show, then a late breakfast before catching the train home. If the hotel booking and ticket weren’t on my phone, I’d consider leaving it behind.

Today is International Women’s Day. One day to acknowledge all that women do without credit. It’s like taking a day to acknowledge the oxygen we breathe, or the potable water from the faucet. Aside from our longer life expectancy, I expect there to be more older single women than men. A single woman is often lectured about why she needs to need a man if she expects to find a partner. And yet, when a man seeks a woman, he expects she take on a laundry list of responsibilities, including the laundry. Even though my parents afforded me the freedom to determine my own life, there were different expectations for my brothers and me. I knew that education was my ticket out. My parents never reminded me to do my homework, while my brother seemed to not care. I worked when I was in college and graduate school, sometimes multiple jobs. My brother prioritized having a good time. While the trail on the pirate map of my life is circuitous, landing on the X of this treasure of financial and personal independence was hard earned. So when you see a single middle aged woman taking care of herself, you best be sure she’s not quick to hang that up for a bit of companionship. There is a price for freedom, but the alternative may cost more.

My brother said I was a nicer person when I had a boyfriend. To him (and most men), how a woman behaves is more important than what she does. Every day women face microaggressions, from other women as well, particularly those with more traditional paths. Enough microaggressions add up to misogyny. Few men have understood a woman’s perspective. Most don’t even know how much we think about our own safety, daily. Men and women have always seen the world differently. Though I don’t want the mostly self-centered perspective of most men, I would like, as RBG said, for them to take their feet off my neck.

“Men are afraid that women will laugh at them. Women are afraid that men will kill them.” -Margaret Atwood

Apparently last Friday was Employee Appreciation Day, but my employer is so far behind the eight ball that we’re getting an hour off today. Whatever, I’ll take any time I’m offered. I’ll likely convert any performance appraisal award to time as well. Hopefully those are coming soon. Work has become a chore, the thing to keep the paychecks depositing. I’m leading two projects, but more from behind the curtain. One person I’m charged with mentoring isn’t proactive, and the other works part-time. Since my supervisor doesn’t push me, I’m not so keen to push them. It’s a vicious circle.

I used to invest much of my time into work. In addition to pursuing innovative and relevant projects, I actively made friendships and sought to create a more inclusive environment for everyone. Lately I’ve been feeling excluded from promotional opportunities, and being overlooked in general. My response? Go with it. Stay underestimated and below the radar. Keep a low profile. Focus on something other than work. Let those who want my perspective ask for it. Otherwise I’m happy to keep my head down and collect my paycheck every other week. There’s so much more to life than work. I’m ready to downshift.

A few times a few years ago I went to a writers group that met twice a month. It’s a mix of very different people who come together to provide honest yet kind feedback to shared writing samples. I loved every night I went. I’m not sure why I stopped going. I want to go back. I have a piano in my house. It’s probably out of tune now, not that I could tell. I have sheet music that I like and I’m sure there is some muscle memory in my fingers. I want to start practicing again. I used to belong to a yoga studio, then, during the pandemic, I practiced at home. I want to get back on my mat. I’ve already gotten on my friends’ calendars. I’ve pruned my friendship tree further. I’m down to a core of six people, half of whom live in my city. I could be considered lucky, but I spent decades investing in dozens of friendships. Six is above the expected rate of return.

Similarly, I’m going to invest in developing new neural networks in my brain. This will result in redundancies that will serve as backups when a single neural pathway fails. By working now, in my fifties, to increase connections in my brain with creative endeavors, I’ll protect myself from the future of a shrinking brain. Late onset Alzheimer’s isn’t necessarily hereditary.