Epilog

I need to check with my cousin if they’re free for a visit this weekend. Dad has asked me to ask my cousin for his opinion on whether Dad should live on his own, since my opinion clearly doesn’t count. I don’t care. As my brother emailed, it doesn’t matter what Dad thinks, wants, or says.  Decisions are up to us. The POA forms are supposed to arrive this week.

I found a brilliant YouTuber, she’s a geriatric psychologist whose father has dementia. I love her perspective and have shared her videos with my brother. He agreed. Now that I’m so far into this, I can understand why I was so lost before. There’s so much to learn and nothing before had prepared me for being a caregiver for a parent with dementia. Finding that social worker, the Alzheimer’s support group, and the right doctor were key. It also helped to talk to people who had a clue about this, to calm me down and help me understand that the mountain didn’t need to be climbed in a day. Every caregiver for a loved one with Alzheimer’s will forge their own path, including my brother.

My brother has reached out to me on the last two Tuesdays with a simple text message, “How are you doing?” I previously complained that he doesn’t even ask me how I’m doing. When it’s his turn to be Dad’s caregiver, I wondered if I’ll need calendar reminders to ask how he’s doing. Or if he’ll be reaching out to me more regularly. Or if we both just carry on. Yesterday, on the phone, my brother sounded very relaxed about Dad moving in with him for two weeks, when he’ll then move Dad into a memory care assisted living facility, which he will get Medicaid to pay for. He clearly had not been paying attention to anything I’ve been telling or sending him or even during our meeting with the lawyer. It’s easy to be calm when your head is in the sand. I began to explain again. “Wait, so how are we going to do this then?” “Yes, this is exactly the pickle we are in,” I replied calmly. I’ve earned this state of inner peace.

I think I will go to the Alzheimer’s support group next week. I’ve let my brother know so he can at least call or text Dad while I’m away.

I took Dad with me when I went to pick up his medication refills. The pharmacy is within the grocery store so I picked up a few more things. I ran into the husband of a work colleague in the produce section. He was telling me about his own challenges at work when Dad walked by multiple times. I stopped to introduce him, but then when Dad walked away again, I gave my colleague’s husband a nutshell explanation of what’s been happening. I figured he’d tell his husband, who would then tell my other colleagues, and for a split second I hesitated. But then I thought, f*CK it. When I got home and unloaded all the groceries, I actually felt relief. I don’t feel like hiding anymore. I don’t feel like proclaiming our situation either, but I have no reason to hide. And by being honest with him, I felt strong. I didn’t give him all the details, but enough for him to appreciate that I have my own challenges. I didn’t wait for any sympathy, I know where to find it in the dictionary.

I’m getting close to single digit days left. I feel like a kid before Christmas. I can’t wait to get my life back. I will not be so quick to give it away again. I realize now that by staying single I have sidestepped a life of servitude. My brother sent Dad one photo of one place he looked at. It was a SNF so it was only a room with a bed, a sitting chair, and a bathroom. He told Dad that he found it too small so he’ll continue to look. The first thing in Dad’s reply was to thank him for taking the initiative and spending time from his busy day. My time, on the other hand, is not considered. The sacrifice of my time, going into my office, spending time with family or my friends, basically doing anything I want other than cooking, cleaning, and spending time with my father, is completely discounted. This is not unusual, and is especially typical in my culture. Though I imagine it’s even worse for a wife and a mother than for someone who’s only a daughter. Only a daughter. If nothing else, these three months have solidified for me that I have no regrets in my life.

Dad directly asked the doctor if he could stop his medications, for which the doctor provided an extensive explanation why these drugs are preventative, and he doesn’t advise it. Dad conceded, but after the doctor left, told me he’d only take them for three more months, one more refill. I didn’t reply. I did text my brother, it’ll be on him next. He wrote back saying the bank will withdraw funds from Dad’s account that were temporarily deposited because the investigation for fraud was filed too late. I had asked my brother to deal with the banks because I couldn’t do everything. Sigh. I suspect Dad will be living with my brother for more than a couple weeks. But I could be wrong. And I’ve done all I could.

During our walk yesterday I saw a dead baby snake. Using my shoe, I flipped it over onto its belly. “I thought it was a worm,” Dad said. “It’s a baby snake,” I replied, “dead.” A few steps later and Dad stopped, “Another dead snake!” I looked. “Nope, just a twig,” I said. “Hmm, my eyesight isn’t as good.” I didn’t reply. The doctor recommended Dad get his ears checked also. I couldn’t get appointments within the next two weeks, so will tell my brother to make appointments with an otolaryngologist and an ophthalmologist, oh, and a dentist. And do Dad’s taxes. I guess I didn’t get everything done.

Dad will have his last doctor’s visit this morning. I appreciate Dr. B. He’s been honest, responsive, and kind. I hope Dad can find someone similar when he moves in with my brother. Two days ago Dad told me that he’s going to ask Dr. B if he can get off his meds, for cholesterol and diabetes. I’ll wait to pick up his refilled prescription until after the doctor consults Dad. I expect Dad to try and convince the doctor that he doesn’t have dementia anymore. Showtime.

I used to love cooking for friends. I’m not sure I feel the same anymore. Or at least not for a while. I’m already starting to hate the smell of fried egg. I usually light a scented candle after making Dad’s breakfast. Except for vacuuming the house, I stayed in my room most of Sunday. I wanted to avoid Dad. We went for a walk after his tea. He told me how he was looking up his favorite actors, from George Clooney to Michael J Fox and he feels so sorry for them and the sad state of their health. His implicit message – “Look at what great health I’m in!” Then he told me how he’s going to find a 2 bedroom 2 bath apartment to live in. I didn’t respond. My strategies are to stall, lie, or ignore. I’m leaning heavily on the ignore.

I finished my weekend chores, including dumping a couple bags of topsoil onto the garden I’m making. I planted a few herbs last year, and bought some more to plant next weekend. I think the flower seedlings will need a few more weeks before I can transplant them. I went to Etsy and found some lovely garden fairies. I’m excited to watch it all grow.

Dad lies, a lot. I used to get angry, but now I just say “Okay, Dad.” I’m getting better at remembering that I can’t trust anything he says. And that he’s not doing it intentionally. Hence my ignore strategy…the less I engage, the less he talks – I’m trying to minimize the lies.

Sunday, a day of rest. Vacuuming is the only chore today. Then I plan to lie on the couch all day and read the latest book I got on Libby. This week will go fast. Doctor’s appt tomorrow, POA forms in the mail, finalizing estimates from contractors. Then next weekend is the last round of visits, laundry and cleaning, and shipping what we can’t pack.

My brother has connected with his local area agency on aging, a lifesaver when it comes to navigating resources for the elderly. Yet another example of valuable government resources – by the people for the people. He sent me a list of Medicaid approved SNF’s, so I guess I’ll be looking through those while on the couch. Men will never understand how much women do, and they’ll always ask us to do more. Hence the reason single, childless women are the happiest subpopulation (shhhh! don’t tell!).

Yesterday I ran a bunch of errands with Dad. In the car he was almost like a child, rattling off things he observed outside the car window, almost to prove his cognitive ability. After we came back, I finished a few more chores, then started heating up leftovers as lunch for myself (Dad doesn’t eat lunch). I was just about to take my plate out of the microwave when Dad startled me by walking into the kitchen holding up his phone. He usually stays in his room until I call him for tea at 3pm. “Look at this!” He exclaimed with glee, showing me a headline that says “Indicted!” with a mugshot of Donald Trump. “Yeah, Dad, that’s old.” “No, it just happened,” he insisted. For a split second I almost believed him, but I had read the news that morning and knew that the judge in Fulton County said he’d make his decision about allowing the DA to proceed in two weeks. “Okay, Dad,” I said while grabbing a fork and sitting down to eat. He stood there for five minutes staring at his phone and tapping on it as I shoveled gluten free pasta with impossible meat and mushroom sauce into my face. What’s the point of arguing?

When I think about the times Dad became anxious, he ended up wanting to blame me because I wouldn’t accept his “dreams” as reality. I would get angry because it felt so stupid to argue reality. Then he would feel bad because I “barked” at him. That one morning, when he apologized, I wonder if it dawned on him how much I’ve been doing for him. What does it take to step out of your own perspective to see another’s? Humility. Open-mindedness. Confidence. I’m not sure I have all these, or that I get them at the same time. What have I been missing in my own life because I refuse to see someone else’s reality?

The forecast looks good. Not much sunshine, but warmer weather. I think I’ll move some plants back outside, like the citronella and jasmine.

I don’t know what I’m doing with Dad. There are people who are trained to work with people who have Alzheimer’s. I’m trained to write code and manage data. My analytic brain is lost in this world of feelings and emotional stability. I’ve had to learn quickly (though I fail often) that keeping Dad content is the goal. That may mean stalling on a decision he wants to make, because he’ll likely forget anyway. It may mean lying, if he can’t tell the difference. It may mean not talking, to avoid a difficult conversation. I just have to keep him fed, clean his room, do his laundry, take him for walks, and on time for appointments. Every day feels tenuous. Fortunately most days are routine and uneventful, but when he gets anxious, he can’t tell the difference between reality and what he later (after I correct him, but only when I have to) calls “dreams.”

Dinner last night was leftovers, and uneventful, my favorite kind. Is this what eventually happens to people who live together? Just get through dinner without an argument? There’s no point arguing with Dad. He won’t understand anyway. My only “wins” are demonstrating reality to him, like a stack of one dollar bills is not equal to fifteen thousand dollars. I can’t lord these over him, rather gently point out the inconsistency and move on, otherwise he gets anxious, which makes me anxious. Though I’m not good at it yet, I try to remain calm.

Today is Saturday, and I want to clean the house and go shopping. The pharmacy called and said Dad’s refills are ready. Maybe I should leave the prescription at my pharmacy, so it’ll give me an excuse to go see him every three months.

I carry guilt as if I’m not doing enough, or doing it incorrectly. The curse of the eldest (only) daughter. I worry that I’m constantly f*cking up, with my friends, at work, with my family. But I’ve had a few instances lately where I’ve spoken my truth and felt that pang of regret, only to be followed by a willingness to let it go. Let it be someone else’s weight to carry. I don’t have to carry all of it. I don’t want to be a martyr. I don’t want to be rude, but I also don’t want to be responsible for others’ feelings. I can be kind, I can be thoughtful, but I shouldn’t have to compromise my own peace of mind to alleviate the stress of others. It’s their problem. This is true for Dad, for my brothers, my mother, my coworkers, and my friends. Practice leaving their problems with them. Asteya.

Finally. It’s March. And a Friday. It feels like an early spring and I’m tempted to plant my seedlings outside, but I will wait. Tomorrow I will vacuum, do laundry, and sweep the house. Maybe I’ll pick up some top soil for outdoor containers and my front garden. I have big plans for that garden. I get so much joy watching plants grow.

Yesterday was a good day. Dad and I stuck to our basic routine and only talked about the weather, movies, and my plants. Next weekend will be the last time I clean Dad’s bathroom, well, I guess once more after he’s gone. It’s a bizarre feeling to look forward to the absence of parents. I know they did what they thought was their best. But if you have three children and none of them want to look after you, then you probably did something wrong as well. Then again, Dad didn’t go back when his mother and siblings were dying, and my mother had to be coerced into going back when her mother was on her death bed. You reap what you sow.

At least I’m not a f*ckup. I pay my taxes. I do my job. I take care of my house and health. I don’t depend on anyone and find intimacy overrated. Only once, nearly twenty years ago, did I want to be a spouse. I moved on when that didn’t work out. Maybe I’m my own version of effed up. I could be kinder to Dad. But somewhere in my bones, I feel that being his surrogate spouse is where my kindness runs dry. I make every meal, including his special juice smoothie, prepare his meds, schedule all his appointments, pay his bills, do his laundry, and clean his toilet. There’s no energy left to be kind.

The best thing about not living near your parents is that memories of the best times with them remain intact. These three months of caring for my aging parents, particularly Dad with dementia, is, by far, the hardest thing I’ve ever done.

Leap year. There just had to be one more day. I want to be left alone. I want to be alone in my house with my plants. I want to clean every crevice then take a long nap. But I can’t even do that when I get back because contractors have to fix my broken house.

I thought I could go to my next Alzheimer’s support group, but hearing Dad on the phone this week made me realize I can’t leave him alone without keeping tabs on what kind of trouble he’s getting himself (and likely me) into. It’s getting harder for me to feel sorry for him. And he lies, a lot. I get that his reality is up for grabs, but he will say anything that he thinks might help him, as if he thinks being old is a shield from consequences. He doesn’t think about me. Apparently he thinks about my brother though.

As I made his breakfast yesterday, I imagined how I would feel if he apologized for the burden he had placed on me instead of insisting that he doesn’t want to be a burden. If he admitted his fear of the future instead of arrogantly declaring that he’s going to live for another 7 years and that he’s the healthiest person in his family. If he was willing to be a partner in his care instead of an entitled recipient. Perhaps my heart isn’t stone, because I might change my attitude if his approach was different.

Before dinner Dad wanted to show me the twenty eight grand in cash he has and that he promised my brother he would show me. Instead it was 15 Benjamins, a couple twenties, and a stack of ones. Less than $1600. He thinks he can live alone. Why do I even bother trying to convince him otherwise? At dinner Dad insisted that he would move directly into an apartment when we get to my brother’s house because he doesn’t want to burden my brother with even one day of living with him. I asked him why he felt okay to burden me for three months. He didn’t understand the question. It’s getting harder to not dislike my father. Everything I thought he was is slowly being ripped away. I ended the conversation by saying I didn’t want to argue with him anymore, that we should go back to our routine where I just cook and clean for him.

Later that night I got a text from my mother. Her electricity and water are out, and it’s going to be cold tonight. All I could do was call her and encourage her to try to stay warm. She agreed, she’s tough. She’s a woman. Then my brother called and said he’s trying to get contractors to finish replacing his floors before we arrive. I asked if he’s expecting me to cancel our tickets. Thank God he said no. At 10pm last night Dad still hadn’t taken a shower (usually he’s done by 8:30pm). I get nervous when he’s off his regular schedule. I suspect he was on his phone trying to figure out his future with no money.

I’m going to try and limit my conversations with Dad. If he seems agitated, I’ll only ask what I can do to make him more comfortable.

Addendum: Dad apologized to me this morning. I replied with, “That’s okay. Is there anything I can do to make you more comfortable?” This will be my mantra.

Even today isn’t the last day of the month. I’m working from home this week, and next, and the next. I watched Dad as he finished his breakfast yesterday and put his dishes together to put in the dishwasher. There was something sad about seeing this old man with nothing to look forward to in his life but writing his book and depending on his children to care for him. I took it as a warning for myself.

I am skeptical that Dad will be willing to move into a SNF while staying with my brother. I’m skeptical that my brother will find a SNF that will be acceptable to move Dad into. I just know that he won’t be able to move back in with me. I’ll likely have to move in with my mother at some point. Hopefully she will be more accepting of respite care in her home when I need a break. We’ll need to have clear conversations about allowing her to die in that house. Dad thought he was going to die on a ship and be buried at sea. I suspect he’s trying to figure out how to not end up as an invalid in a nursing home. I wouldn’t want that either, but what options are left when you have no money? I imagine he thought all those people he “helped” (including his children) would be falling over each other to take care of him. Instead he can’t find any sympathy. I know where to find it in the dictionary.

Yesterday I overheard Dad “registering” with Uber but when giving the home address he spelled my brother’s street incorrectly. Later I caught him on the phone trying to upgrade our tickets thinking he could get extra baggage allowance. I was so angry. I didn’t yell at him, but my voice was tense enough for him to feel my anger. After that I heard him trying to “qualify” for something, which he was clearly being denied. It’s these things that keep me on high alert, extra vigilant. The only time I’m relaxed is when Dad is taking a nap, or sleeping at night. Just when I started to feel sorry for him again, he does something to remind me that all I can do is look forward to getting my life back. Countdown back on.

Maybe my heart is stone. I feel like all that I do is enough and smiling is extra.

Are the days moving slower? How is it just Tuesday? The lawyer is sending financial and health directive POA forms and we’re scheduled to go sign them in two weeks. I cancelled my Zoom therapy appointments since I essentially have no privacy until Dad leaves, and I can’t leave him alone. I need to call the hospital system and get them to change Dad’s address so my mom doesn’t keep getting his bills, and I need to know why Medicare isn’t covering $400 of doctor visits. Then I need to get the greenlight from the insurance adjuster so the contractor can schedule work when I get back from dropping Dad at my brother’s. I’m in the home stretch but it still feels so long.

My younger brother finally wrote an email back, asking what specifically Dad is diagnosed with. He wanted to know what stage Dad is in, and if he’s at a “manageable level.” These are the comments of an ignorant person. I did my best to reply without emotion. But my eyes rolled out of my head a few times. He’s so preoccupied with protecting himself that he has no recognition of the damage he’s causing. Typical narcissist.

I feel like I’m teetering on a precipice, that it just takes one small misstep and I’m screwed again. Dad was sneezing when we came in from our walk yesterday, and he was blowing his nose all afternoon and at dinner. I’ve been gargling with warm salt water day and night since my brother left with his cough. If Dad gets sick, I’m putting a mask on him and flying him to my brother’s. But Dad refuses to acknowledge that he _ever_ gets sick. Oh to be that arrogant.

I’m getting closer to my last times with Dad… Last time making his juice, last time cleaning his bathroom and doing laundry, last time visiting my cousin. What will I do when my time is returned?

We saw a movie yesterday, a simple story about a janitor and his daily routines in life, and the joy he felt in the smallest moments. The moments when he’s paying attention. Dad didn’t get it. He needs big dramatic scenes. I prefer the subtleties. How the sun sparkles through leaves, the sounds that make up the city, the hints of emotion on a stoic face. I’m looking forward to getting into my gardens.

Buckstacy is finding a twenty dollar bill in your jeans that you had forgotten about. What’s the word for finding your own time again? I have such gratitude and value for my time. I hope my reading continues. I’m glad I don’t have a television. I understand that habits are what make a person. I won’t be so quick to give my time away, and I won’t be so foolish to ache for a distraction from it.

Our afternoon walks are thirty minutes of three laps on my street. I’ve run into more neighbors these last two months than in the previous year. I don’t mind comparisons to my life. I hope people are happy in theirs. I’m finding myself less in need to make them happy. I also recognize the people pleasing curse in others. Codependency is not an easy program to decondition from. Freedom may seem scary at first, but it’s truly the only way to live.