The Address Book

My mom had been looking through an old address book.  You know, the kind where you wrote the addresses and phone numbers of friends and family in the days before cell phones and contact lists. She told me she came across an entry and just couldn't think of who these people were. I was expecting it to be some old friends of my dad who she hadn't seen or heard from in decades. Nope, it was my cousin John and his wife. John is my first cousin and my mother's only nephew. He lived down the street from my grandparents and we saw him, at a minimum, every Sunday in the 1970s when my grandmother was still alive. We spent every major holiday together when he and I were kids, and after John got married 35 years ago, we spent every major holiday with him and his wife. These are not distant relatives.

After I told her who they were and talked about them as well as my other cousins and my uncle, she said she knew who they were but she couldn't picture them, or more importantly, him. I asked who she was trying to picture: the little boy version of him or the grown man with a mustache and bald head? I showed her a recent photo of him on Facebook. No recognition.  Granted, we haven't seen them since before COVID, but he's basically looked the same for the last 30+ years.

I asked her if she remembered John's older brother who died in a motorcycle crash in 1972. After a minute, she told me in full detail about visiting him in the ICU before he died. It's amazing how this disease works. She couldn't place the name of someone she's known for more than 60 years. Someone whose last name is her maiden name. Someone she's seen countless times over most of her life. But she could remember the details of one incident 53 years ago.

To say this freaked me out would be an understatement. Who will she forget next?

It's happening

One day this week, my phone rang at 7:30 am. It was my mom. She'd just woken up and didn't know if it was morning or evening. Her clock doesn't say am or pm and she couldn't tell by looking out the window. (It's getting dark around 6:30 pm now, but even I don't remember that from day to day.) This wouldn't be a big deal, but she didn't know if she needed to take her morning or evening pills. Also, she knew that she was confused and that upset her.  (My mom, the version I knew for the first 50-some years of my life, never got rattled easily.)  It took a lot of back and forth conversation, but I finally got her settled down and oriented as to the time of day. I asked if she wanted me to come over but she said she was OK. I went about my day, called her a couple times, and by the next day she was totally back to normal (well, her new normal, but oriented).

This episode has had me thinking seriously about moving in with her in the near future. I've always known that I'd likely have to move in there some day, but I always thought it would be because of a physical problem, not a mental one. My mom went through a bunch of cardiac procedures a couple years ago and I always figured heart disease would do her in. It may still beat Alzheimer's to the finish line, but she's got a couple new parts in there, so she'll probably keep on ticking for a while longer. I imagined having to feed, wash, and dress her, but I'd still be able to talk to her and she'd still be the person I've always known. The woman I grew up with. The woman who became my best friend after I grew up.  The thought of taking care of her but her not really being there, is frightening, depressing, and horrifying. Is it wrong that I'm hoping some other body part craps out before her brain does?

My stepdaughter's wedding is in three weeks. (A lot of my energy and time in the past month or so has gone into preparing for that.) I think right after that, I'm going to start moving some of my clothes to mom's house and look into getting internet there so I can do my work-from-home days from her house instead of mine. I'm old enough (55) and have enough years (30) at my job that I could retire with full benefits if I have to to take care of her, but I'm not really ready for that. I know that that's thinking too far ahead and I should just take one day at a time, but it's hard not to think about what comes after whatever comes next.

UTI... again

i got the panicked call at 2:30 pm on Friday while I was in the middle of a meeting.  It was my mom telling me she had a "roaring" UTI and needed me to take her to the ER. She's had them before, including a couple this summer.  I took her to urgent care each time.  Urinary tract infections are not hospital-worthy and the emergency department is the last place you want to be for any reason. I told her I was in a meeting and, even if I wasn't, I was 20 miles away at work. I texted my husband to ask him to bring her to urgent care. No response. I tried again about 10 minutes later. Still no response. Grrrr.

The meeting ended and I called her to say she'd just have to wait until I got home. There were no appointments available, so we'd be walk-ins. I called hubby (or he called me, I don't remember now) and he said he'd been doing something in the basement and hadn't heard/felt the texts come through. (A likely story.) Regardless, he didn't want to take her to urgent care because he "can't get sick." (Oh yeah, but I can.) He asked if she could handle going in by herself and he'd wait in the car. I told him to forget it.

I went straight to her house after work and brought her to urgent care. She gave her urine sample and then we waited. And waited. And waited. There weren't that many people there but it was more than 2 hours before she was called back. The doctor-like person* (she only introduced herself as Debbie) finally came in. Apparently, she hadn't looked at my mom's chart because she blurted out the name of some antibiotic ending in "mycin" that she was going to prescribe. I told Debbie that my mom had recently had two UTIs (both were caused by e. coli) and Bactrim was what finally knocked them out. I also asked if this -mycin med was related to erythromycin, which my mom is allergic to. I was assured that the computer would flag it if she couldn't take it.

Eventually, another doctor-like person who Debbie forgot to introduce came in to tell us that they were prescribing Bactrim. The computer didn't flag the other med but they looked it up outside of the system and, lo and behold, it's related to erythromycin! We picked up the Bactrim at the pharmacy and I brought her home. It was pushing 9:00 pm at that point and I hadn't been home since 8:00 am, nor had I eaten anything since lunch.

My husband has now justified not bringing her by noting that he doesn't know what she's allergic to, so it's a good thing I brought her. How nice that he now has that excuse. If he'd brought her at 2:30, I'm sure they would've been in and out in no time and might've had a different provider who was on the ball.

I feel so alone. I know she's my mother, not his, but not being able to rely on someone else even for something relatively easy is demoralizing. 

*The after visit summary showed that Debbie is an APN, by the way. Mystery solved.

Happy Birthday!

My mom turned 91 yesterday.  Super old, I know.

On Sunday, I took her to Seasons 52 for lunch. She has little to no appetite, so their shareable appetizers and sides work well for us. The waiter asked for our drink orders and she said, "I guess I'll have a soda."  I reminded her that she hasn't had soda in years and usually drinks water.  That was our only real "Alzheimer's moment" during the meal. She ate her fair share and said everything tasted good, despite her near total lack of taste.

Yesterday, I bought her a little chocolate bundt cake with chocolate icing because, in case you haven't guessed, she loves chocolate. I didn't bother with candles this year. My son and I sang Happy Birthday to her with the cake in the other room. We each had a slice later.

All-in-all, it was a good couple days, at least from my perspective.

I'm weary

Yesterday was rough.  For me.  

My mom and I had dental cleanings last Saturday (9/6).  That night, she got floss stuck in her teeth, so I brought her back to the dentist on Monday to get it picked out. The dentist found a defect in a crown that had caused the floss to rip but he didn't have time to fix it, so we went back yesterday and got that fixed. That was the third visit in ten days. I work full time and had made the appointment when my work schedule was clear. A few days later, a work meeting was scheduled at the exact same time. I tried listening in to the meeting while I picked Mom up and drove her to the dentist. My work phone doesn't support Bluetooth, so I slid it in my seatbelt by my ear and tried to listen above the road noise but ended up dropping it while turning my head and missed most of the meeting. It was frustrating. It took all my self-control to not take it out on my mom.  It wasn't her fault I had a scheduling conflict. It wasn't her fault there was a problem with a crown. It wasn't her fault the floss ripped. I sucked it up and pushed it down, dropped her back off at home, and went back to work from home.

A month ago, I had made a follow up appointment with her neurologist for yesterday afternoon, so for the second time that day, I picked her up and drove her to an appointment. At least this time, I wasn't missing a meeting. There are two schools between my house and hers, so I had to deal with buses and slow school zones since it was around 2:30 when I went to get her.  We arrived at the 3:00 appointment on time and proceeded to wait until after 3:30 to be seen. I was feeling defeated and didn't even have the energy to be annoyed about waiting. I could sense my mom getting annoyed on my behalf and just hoped she wouldn't make a stink about it. Luckily, she didn't. The doc spent a couple minutes with her, upped her Aricept dosage, and added memantine (Namenda). The word "Alzheimer's" was mentioned for the first time at this appointment. If my mom caught it and understood the significance, she said nothing. I asked how he knew it was Alzheimer's and not, say, vascular dementia. He said there was no way to know but the treatment is the same either way. We see an associate of his in three months for her follow-up, so maybe I'll get more info next time.

So here I am today.  I took the day off from work because I was beyond stressed by the time I was done chauffeuring yesterday afternoon, and also so I can put in a couple hours of work that I missed doing yesterday. I'm also planning to go shopping for shoes to go with the dress I'm wearing to my stepdaughter's wedding next month. I spent two hours on Sunday trying on bras to go with this dress and was too worn out to look at shoes afterward. (The dress has an asymmetrical neckline that would show the top of a regular bra on one side.) I also need a haircut. I'm stressing about when to schedule that in relation to the wedding date. And, of course, I need to pick up Mom's new meds and get her some cranberry pills that she's about to run out of. 

My mom thinks I'm at work in my office today. I'm not telling her otherwise.

A good day

It's not too hard to get my mom into the car for a ride. Getting her back out of the car is another story. She doesn't want to go in anywhere -- restaurants, stores, etc.  So I drive her around a lot.  Today, I took her down the shore. For those not from New Jersey, that translates to "I took her for a ride to the beach." She's 90, has lived in NJ all her life, but had never been to Long Beach Island (LBI). I was making new memories with my mom, even if she won't remember them.

We stopped to see my son at work (he came out to the car to see her), stopped again to get some lunch for me and a milkshake for her (I went in and got both), and then headed across the state to the coast. Most of the ride is down a state highway that's one lane in each direction and there's nothing but trees on both sides for most of the ride. For those familiar with NJ, I'm talking about the Pinelands National Reserve, a.k.a. the Pine Barrens. We talked about the vast forest that takes up a good portion of the southern half of the most densely populated state in the U.S. The undeveloped acres (about 1 million of them) that are the Pinelands. What it must be like to be one of the relatively few residents in the area. How one might've come about owning a house within a state forest and national reserve area. We decided most of the homes have probably been there for generations and the current owners were grandfathered into land ownership.

After we crossed over Barnegat Bay and arrived on LBI, I took a left and headed north. We drove through the tiny towns of Surf City, Harvey Cedars, and Loveladies on our way to Barnegat Light.  We noted the differences in houses and businesses (or lack thereof) in each little town and the changes in the width of the island along the way. We pulled into the nearly full parking lot at Barnegat Lighthouse State Park. I asked if she wanted to get out and see the lighthouse up close. Surprisingly, she agreed. I knew from being there before that there was a paved walkway, so she got behind her walker and slowly made her way up the path. We got to see the lighthouse up close, walked a short distance on the walkway toward the Atlantic Ocean to see the southern tip of Island Beach State Park, then went in the other direction to see the Lighthouse Keepers statue and the plaques with the names of all the former keepers of the light. She was delighted to see something new.

We got back in the car and drove the 18 miles through the towns of Ship Bottom, Brant Beach, and Beach Haven to the southern end of the island at Holgate. The parking lot was packed, so we didn't get out, but we were able to clearly see the towering casinos of Atlantic City from across the bay.  Along the way, I drove through Bay Village and past Fantasy Island Amusement Park -- the closest things LBI has to a boardwalk. After nearly 91 years, my mom had finally been to LBI and seen it from end to end. 

I headed back north.  The only way on and off the island by car is the way we came in near the middle of the island. I took a 15 mph road closer to the ocean than the main road. We saw some older homes along with lots of people walking, jogging, or biking on this quiet road. I parked at the Brant Beach municipal building because I knew there was a ramp to the beach across the street. I asked Mom if she wanted to see the ocean. She pushed her walker up a long, long, long ramp to the top of the walkway and then sat on the walker (it has a seat, she wasn't riding the handlebars) while I pushed her the rest of the way over the dunes to the gazebo overlooking the beach. To the best of my memory, it was the first time she'd seen the ocean since our last vacation with her in 2017, before my son's preseason soccer practices in high school took that vacation away from us.  It'll likely be the last time she ever sees the ocean, but I didn't mention that to her.

She quickly got chilly sitting there with the slight ocean breeze, despite it being about 80 degrees outside, so I pushed her back to the ramp and she walked the rest of the way down. We got back in the car for the hour-long ride back. On the mainland, I stopped at Wawa (a South Jersey staple -- convenience store and often gas station combo) and I got us frozen fruity drinks for the ride home. We were both in good moods from the nice day and the sea air. 

It was a good day.

No, Mom, the doctor is not going to remove the floss stuck in your teeth.

Another frustrating aspect of caring for my mother is that she has a lot of medical appointments (in addition to those for her noggin) and I, of course, have to bring her to every one of them.

We both went to the dentist on Saturday for routine cleanings. Because of her heart issues, she has to take antibiotics before every dental procedure. She’s had to do this for years. More like, decades. On Friday night, I reminded her that she had an appointment the next morning and would need to take the antibiotic that’s been sitting on her kitchen counter for several months waiting for this dental cleaning. Ok, no problem. At 7:30 Saturday morning, she woke me out of a dead sleep calling to tell me she can’t go to the dentist because she doesn’t think she can handle having her teeth pulled.

Sigh.

Me: Mom, you’re not getting any teeth pulled. You’re just going for a routine cleaning.

Her: Then why am I taking these antibiotics?

Me: Because you ALWAYS have to take antibiotics before any dental work.

Her: Oh. Are you sure I’m not having teeth pulled?

Me: Yes. I’m sure. I’ll call you in a few hours to remind you to take them.

I went back to sleep for a bit, had breakfast, and so forth. I got out of the shower around 9:30 and there’s a message from her on my phone. She’s panicking again about having teeth pulled. I call her back and go through the same explanation.

She takes her antibiotic at 10:00, I pick her up, and we go to our 11:00 appointment. She does fine. No problems. See you in 6 months.

That evening, she brushed and flossed as always but, unfortunately, a bit of floss broke off between two molars and she couldn’t get it out. I told her I couldn’t do anything about it until Monday. She complained about it a couple times on Sunday, but no big deal.

Monday morning she had a routine follow-up appointment scheduled with her primary care physician. She tells me that all she cares about is that he gets this floss out of her teeth.

Sigh.

Me: Mom, the doctor isn’t going to fish floss out of your teeth. They don’t do that. That’s what dentists are for.

Her: I miss the old days when you went to one doctor for everything. All these specialists are a pain.

Me: Mom, doctors have never done dental work. You’ve always gone to a dentist for anything related to your teeth.

Her: Grumble, grumble.

We went to the doctor’s appointment and, thankfully, she didn’t ask him to dig in her mouth. But as soon as we were out of the building, she started complaining that he didn’t fix her problem. So, I called the dental office from the parking lot and got an appointment later in the day. They fished out the floss but found that she has a sharp edge on a crown (probably caused during the cleaning) back there and the dentist didn’t have time to fix it during this emergency appointment that they squeezed her in. So I made an appointment for next week to get that fixed. (Why next week? Because I work full time and can’t take her here, there, and everywhere when it’s most convenient for her or her doctors. Do I feel bad that she has this sharp edge in her mouth for a few days? Of course. Can I take a day off to bring her to a non-essential, unplanned, midday appointment? No, I don’t think so.)

Now, her new complaint is that she doesn’t understand how the dentist can’t see this sharp thing. I have to keep reminding her that he could see it but didn’t have time to fix it.

OMG. This is so draining and so frustrating.

To make it worse, my mom was a nurse. An RN/BSN who went to nursing school on an academic scholarship and worked in hospitals, doctors’ offices, and even in the U.S. Navy. She’s well-versed in who does what in the medical world, as well as what doctors and nurses and everything in between (PAs, APNs, etc.) don’t do. Like dental work. To the best of my knowledge, medical doctors have never done dental work. Before there were dentists, people went to the barber when they had a toothache and the barber yanked the tooth out. My mom’s old, but she’s not that old that she pre-dates the dental profession!

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Why I’m doing this

I created this blog as a personal journal and venting space. Despite being a Gen Xer, I can type faster and longer than I can write by hand — also, no hand cramps — so I decided to make a blog. I don’t care if no one else ever sees this. I’m not doing this for feedback, validation, or anything else. I just need a space to vent.

When I express my frustrations about my mother to my husband, he jumps right to telling me to put her in a long-term care facility. There are numerous options to work through before I even want to entertain that idea.

I don’t want to talk about her dementia with my friends too much because:

1. I know what it’s like to be the friend with an elderly parent without dementia. Hearing it happen to your friends’ parents makes you worry about your own.
2. I know what it’s like to be the friend with an elderly parent who has died from a dreaded disease (in my dad’s case, Parkinson’s), and it can bring up things you’d rather not relive or talk about.
3. I’m beginning to learn what it’s like to be the friend with an elderly parent with dementia. I don’t want to talk about it when I’m out having fun to forget my problems.

The other reason I’ve started this blog is to record my mom’s decline. OK, we’ll call it a “journey” but I’m well aware that her journey will not circle back to the beginning. Here are a couple things that have happened recently that I’d like to record.

I was on vacation with my husband and son recently in a town that my mom vacationed in with us for about 10 years around about 2007-2017. We’d spend two weeks there each summer. When talking about it over the last few weeks, she’s told me she has no recollection of ever being there. I’ve told her where we stayed, what it was like, and what’s nearby. Still no memory. Each time, however, she’s brought up how she always went to another similar town each summer. I, of course, know that because that’s where she took me when I was a kid and I’ve heard tales many times of her going there and back with her parents and two brothers with sand in their shorts stuffed in a car in the days before air conditioning.

This is the first time she’s really displayed the Alzheimer’s hallmark of lack of memory of recent events but total recall of long past events.

Something similar happened in the past week or so related to cars. Twice recently she described in detail her first car. It had a light blue and cream exterior with a matching interior, no divider between the front and back windows (pillarless hardtop but that’s not what she called it), and she paid around $2,000 for it brand new. I know her description is accurate because she’s told me about that car many times over the years.

At least for now, she still mostly has her personality and knows everyone who I’d expect her to know. We’re off to see her primary care physician for a routine checkup. She remembers the main doctor in the practice but not the advanced practice nurse (APN) she’s seen multiple times in the past year or two. And so it goes.

Only Child

When you’re a kid, everyone thinks it’s so horrible to be an only child. Of course, there were times I wish I had siblings, but for the most part, I was fine being an only. Do you want to know when it’s really awful to be an only child? It’s when your parents get old. After one of them dies, you become the sole caregiver of the surviving parent. It’s not a bad thing when they’re still feeling good and doing their own thing. When they begin the downward spiral toward the end, it’s a different story.

I have no siblings. My father died in 2016. My mother’s two brothers died in 2009 and 2014. One was divorced and the other never married, so I have no aunts. I only have two first cousins and I’m not close to them. I’m married and have one child and a stepchild. My mother and husband never got along, so he’s no help. My stepdaughter never had a relationship with my mother and she also works full time and is getting married soon, so she has no time. My son is 21 and, like many teens and young adults, he’s irresponsible, self-centered, and unreliable. He’s good to drop in on his grandmother occasionally and check her mail once or twice a week, but I’m on my own when it comes to taking care of her.

I drive her to all of her doctor’s appointment. I do all of her grocery shopping. I pick up her prescriptions. I call her everyday. And I bear the burden of watching my best friend slowly decline. I alone worry about the day when she’ll forget me.

To say it sucks would be a tremendous understatement.