All I want is just the way it used to be...

“I can't explain myself, I'm afraid, sir,' said Alice, 'Because I'm not myself you see.” 
― Lewis Carroll, Alice's Adventures in Wonderland & Through the Looking Glass

After we got home, I made it a point to call and check in with her every morning and every morning it was the same. She was sticking to her usual schedule; going to the gym every day, out a few nights during the week, and then out on Saturday night with her current boyfriend and their friends. Everything was fine, she was fine. That’s what she kept telling me.

But she was lying.

In late January, I got a call from one of mom’s water aerobics friends whom I had never met. She had known my mom for at least 10 years and they visited at the pool regularly. She said she was nervous about calling and made me promise to not tell mom that she was the one who called. She told me that she and the rest of mom’s circle of friends from the gym had noticed that mom had become increasingly forgetful and confused. They had been telling themselves it was a normal part of aging until she asked one of them if she could follow them home. To mom’s apartment. The one she had been living in for almost 30 years.

She went on to tell me that mom had missed several outings and had lately been asking different people to drive her to the gym and back home. They’re all in the same age range and they look out for each other so of course they agreed. She also told me that mom had fallen several times. One of those times she had to be transported by ambulance to the hospital for a cut to her head that was bad enough that they had to use staples to close it.

This was all new to me. Mom never mentioned any of this. She then told me about more little falls and accidents and promised to keep in touch while I figured out what in the hell to do. I asked her to give my number to anyone who wanted it and to make sure they don’t hesitate to call me. Soon after, the phone calls started coming in, followed by emails, and then more calls. They had been worried for so long but they didn’t want to risk making her angry. I was grateful that she had so many people who cared and were willing to watch out for her but they had done it for so long. Too long.

I knew I had to talk to her about what I was hearing. Just thinking about it made me sick to my stomach. This is where it starts. This is where I cross over into a role I never saw myself in. I called mom and told her that her friends were concerned about her enough to call me. She became defensive and demanded that I tell her who called. She started listing the names of her friends but I wouldn’t tell her. Now she was getting angry, telling me that someone was stirring the pot because they were jealous. That’s always been her go to response for any woman who had an issue with her; they’re just jealous. Okay, mom. Not this time.

She denied having any issues at all and told me to stop badgering her; I could tell she was gritting her teeth as she talked. I was trying to be patient and calm but it was getting tough. I told her I was going to keep calling her every morning and, anytime one of her friends called or emailed with a new concern, we were going to talk about it. She hung up without saying goodbye.

I was spinning my wheels at this point. I can address a problem in a hurry if I know what I’m dealing with. This was different, it was as if it was so close I couldn’t see it. I didn’t want to see it. I had just started my first semester back at school since earning my associate’s degree. I already had to sit out one semester because of my surgery and I sure as hell wasn’t going to sit out another one. Selfish, self-involved, immature, awful reaction to something I can’t control. I know. I agree. Every time I tried to close my eyes, all I could see was me unraveling. That, and knowing my mom was scared brought me to my knees more times than I care to admit to.

I’d like to think I’m the daughter who would put my feelings and plans aside and come to my mom’s rescue without a second thought; I could write it like that but it wouldn’t be what really happened. There’s a lot of “I” and “me” in here and it’s embarrassing. But it’s the truth.

In the shape of a heart

It’s easy to pretend to not notice little changes in a person when you don’t see them that often; especially when the changes are subtle and unremarkable on their own. We had suspected that something was up but, when we arrived at her place, I had to admit something was very wrong. She looked the same; granted, a little sad, but that was understandable. She asked about the drive, the kids, the dogs, all the normal stuff she usually says. She opened her presents and made the appropriate remarks, offered us a snack and some wine, and continued with the small talk. I asked her how she was feeling and she replied that she was feeling just fine and excited we were there. I shot Bill a look - what in the hell?

The thing that tipped me off that she had really taken a turn was that she has always, ALWAYS, made a point to remark about my appearance; most of the time it was nice but sometimes she could be a little harsh. I hadn’t seen her in a year and during that time I had lost a significant amount of weight, had major surgery, and gone through some catastrophic personal crap. I was thinner than I had ever been and the stress of it all showed. I know this because several of my friends had expressed concern and my best friend had cried because she was so worried about me. But, from my mom, not a damn word. The woman who had invested so much time, energy, and money into making me feminine, graceful, and pageant worthy (none of it stuck) had not one word to say. Nothing about how I was feeling, how school was going – nothing. That one little thing was a big indication that we had a problem. It was just the beginning.

The next day, we offered to take her to lunch but she said she wanted to stick to her normal daytime schedule; however, we could do dinner together as we had planned. Okey dokey, we had just driven 500 miles the day after Christmas to see her but, since I had told her that we would work around her schedule it was cool. We spent some time driving around, checked out our first house, visited my dad’s grave, did some grocery shopping for mom and then checked in to see when she would like us to pick her up for dinner.

She has always enjoyed dinner out and she would never turn down an opportunity but this time she said she didn’t want to go. When I asked her why, she said her stomach was bothering her again and she just didn’t feel like it. We stopped by to drop off her groceries and she acted like there was nothing wrong. Bill and I had decided that we needed to talk with her and now was the time. I told her how much I loved her and how concerned we were. I explained how her over the counter medication usage might be making her not feel well and that her diet of potato chips, chocolate, and wine was probably not helping.

I asked her to please cut back on the pills and try to eat better. I reminded her that she could get precooked food at the deli counter, explained all the things that I would think she already knew, and she acted like it was the first time she had ever heard what I was suggesting. She was being agreeable but it was just to placate me, nothing was sinking in and it was obvious. She told me that she had a doctor’s appointment that one of her friends had booked for her but since she was a new patient it wasn’t until April. I asked her if perhaps she should find one that could see her sooner but she acted like she didn’t hear any of it. I caved and let it go.

In hindsight, I should have been more proactive, I should have loaded her up in the car and taken her to the hospital to have her checked out. But, then again, what would I have said was wrong? She’s acting strange? She’s abusing Tums and laxatives? She just seems off? I’m not sure I could have gotten anywhere and I’m positive she would have talked a really good game and made me look like a meddling daughter teetering on the edge of overbearing and perhaps elder abusing.

Knowing what I know now, and having gained a little bit of personal strength, I would have handled the situation very differently. I so desperately wanted to believe that she was fine and still able to drive and take care of herself. Wishing for something isn't an excuse for not doing the right thing. The hard thing. The hardest thing.

During this trip, Bill and I had visited an independent living facility that was right across the street from where she was living. It was perfect; she could come and go as she pleased, she could keep her car, she could choose to eat there or not, she could have guests, and it even had a little convenience store and transportation in case the weather was crappy or she didn’t want to drive. And, best of all, a call button for emergencies. All this for what she was paying in rent, insurance, utilities, etc. Problem solved! Nope, she wasn’t having that either. We were waved away and dismissed. Thanks for driving down, so nice to see you, tell the kids I said hello. It was an interesting drive back to Oklahoma.

Over the river...

I called her to let her know we were driving to her place in Illinois. I told her we were bringing her presents to her and she didn’t have to do anything special; we would be staying in a hotel close by and we would work around her schedule. She seemed excited and glad that we were coming by but oddly detached. Whatever. I was irritated at this point.

Every year, I tried to do Christmas the way I thought would make her happy. She had certain expectations and if I didn’t meet those expectations her face showed it. I did everything I could to not have her look at me like I was a disappointment. I decorated the way she liked and, for the most part, I made the food the way she liked it -  I was a little passive-aggressive with the mashed potatoes; I still am - if they’re slightly lumpy you can call it “artisan” and get away with it. I took her to the stores she wanted to visit, and if there was a Christmas show downtown I got tickets. I made sure she had her favorite cereal, shampoo and toiletries at my house so she didn’t have to pack them. I know that the hoops I jumped through were mostly self-imposed but, even as an adult, I wanted her approval.

We had told her when we would be arriving; we could be accurate down to the minute thanks to a nifty thing called navigation. She called several times even though I called her when we left and I told her that I would call her every 2 hours as well as when we were 1 hour out from getting there. One of her friends called to ask when we would be arriving because mom had told her she didn’t know. Weird. All the calls were over Bluetooth so Bill heard them, too. He looked over at me a few times and I could swear I saw sadness; this from a man who tolerated my mother for my benefit, no love lost between either one of them. Here I was, irritated with her for making us do this, and he was looking concerned.

He reached over and grabbed my hand and that’s when I started to cry. I don’t think I let go of him until we finally got to mom’s.  

Changes...

In December of 2013, her trip to Oklahoma for Christmas was planned and I was cleaning and decorating the house like a crazy person in addition to getting all the shopping done. At this point, I shopped for the gifts from her and she sent me a check. I didn’t have a problem with this at all since it’s not easy shopping for older grandchildren and she didn’t know what I liked or what to get my husband. Plus, the added expense for shipping. We talked a lot; we talked about what the kids wanted, what I was planning on cooking, her travel arrangements, all the usual things but something seemed a little off.

In the past several months I had noticed our mandatory (her rules), one hour, Saturday at 10:00am phone calls had been becoming shorter and far less detailed. Not like her at all. Also, if she mentioned that she was going to a movie, the next week I would ask her about it and it was the same response every time: the movie was too loud, her friend couldn’t follow it, and it eventually became so awful they walked out. There were a few other odd things but nothing too alarming.

Until she told me she wasn’t coming for Christmas.

She has never been comfortable with any type of discomfort. Her pain tolerance is zero, same goes for heat or cold. Or sunlight. Or darkness. I always made sure to have extra sunglasses, floor fans, blankets, night lights – you get the idea. She often complained about her stomach although she was never diagnosed with any medical problem. She took a lot of over-the-counter medications. Too many in my opinion but it wasn’t worth discussing more than once. When she told me her stomach was bothering her and she wouldn’t be able to make the one-hour flight here I knew something was up.

I told her she still had a week before the trip and she needed to make an appointment with a doctor to be checked out. My reasoning was if she was too sick to fly and willing to spend Christmas alone then there was something terribly wrong. She started handing out every excuse she could come up with. I offered to call her doctor for her and she said he had moved. I suggested she go to the emergency room and she said she just knew she would catch something worse.

At this point, I was pissed. I was tired of trying to help and being shot down every time. Plus, this was just weird. I thought she might come around but the day before she was scheduled to fly here, she told me she still wasn't coming. What in the hell? We decided to drive to Illinois the day after Christmas to check on her. I knew it was the right thing to do but I just didn’t want to; not because I didn’t care but because I was scared of what we might find.

Mom and Dad - No one could love you more

My dad died in his sleep at the age of 62. He hadn’t been well for years but they managed to go out to dinner once a week and see a movie occasionally. He did, however, make it a priority to take care of her as he always had. She had never had to write a check, shop for groceries, pump her own gas, or take out the trash. He did all those things for her and more. Until the day before he died. That day, after he made a trip to the grocery store, he made a list of all their credit cards, insurance policies, retirement accounts, and bank accounts plus each company’s customer service number. Then, he took her to the bank and had her write out a check and cash it. Afterwards, he stood beside her as she put gas in her car for the first time. I have the shopping list he wrote, and the list he made for my mom. These are a part of who he was.

My parents lived in Illinois where my dad retired from the Air Force after having a stroke at his desk at the age of 49. He had reached the rank of Colonel and had been the Deputy Base Commander at Ramstein AFB in Germany and the Base Commander at Pope AFB in North Carolina. He was the younger of two children; his sister, my Aunt Jan, and I are very close. She’s brilliant and reminds me so much of him, from her wit and sense of humor to her story telling ability.

Dad attended Grinnell College in Iowa. He was in the ROTC program and excelled at everything scholastic and extracurricular. He was captain of the football team, participated in track, basketball, the glee club, drama, and ROTC. His parents, especially his mother, expected him to be the best of the best and he delivered. He was 6’2, with dark brown hair, permanently tanned skin and pale blue eyes that always gave away what he was really thinking. He could tell a story that would have you laughing so hard your sides hurt and compose a down right naughty poem at the drop of a hat. He could carry a tune and loved to mimic the girly looking dudes on the Lawrence Welk Show by batting his eyes and singing about doggies in the window.

When he graduated from college he was accepted into flight school and proceeded to become one hell of a pilot. He was one of the first Americans to fly into Vietnam; the movie “Air America” with Mel Gibson is loosely based on what pilots like my dad did minus the drug trafficking. Dad was always tickled that they were told to not wear their uniforms, just a Hawaiian or Panama shirt and casual pants, so they would blend in. I’m certain they did lots of things but blending in was not one of them.

My mom’s father had retired from the Air Force and built his home near Langley AFB in Virginia. Mom was living at home after her divorce and was employed by Nachman’s Department Store as a window dresser. If she ever had a true calling that was it. After work and on weekends, she did all the typical early 1960s single girl things. Cocktail parties and parties on the beach. My dad happened to be working as a general’s aide at Langley when he met her at, of all things, a cocktail party. Their courtship moved along quickly and they were married on March 21, 1964. Mom fell into the job of being an officer’s wife and embraced every minute of it. They moved to Seymour Johnson AFB in North Carolina where I was born 14 months after they were married. They were transferred every three or four years dragging me along with them. The early years were good; mom did her thing and on weekends it was time for my dad and me unless he was golfing. I started taking golf lessons a few months ago. I would like to think that if it’s true that your loved ones stick around and drop in occasionally he would help a girl out with her mad golf skills. I think he’s just sitting back, laughing and enjoying the hilarity of my lack of athletic prowess.

Mom and Dad March 21, 1964

Does anybody really know what time it is?

Mom has been getting her days and nights mixed up. The nurse pulled me aside and told me that mom is leaving her room numerous times at night to sit in a chair in the hallway. And then wander around. The aides try to get her to go back to her room but she’s stubborn. There are only a few aides on duty overnight and her wandering around has them concerned; she could fall, have a stroke, maybe try to go outside (doubtful but possible). Also, she’s being a pest.

She wants them to turn on all the hall lights. They’ve explained to her that if they do that and other residents happen to get up it will confuse them. And for the residents who have middle of the night changes or medication, the bright light will disturb them. None of this sticks. The nurse also told me that mom will ask when breakfast will be served. They tell her that it will be served at 7:00am, just like always. She accepts this answer until another resident wanders out. At this point she will report loudly that they are not serving breakfast and she doesn’t understand why.

Sometimes she calls me. I explain that it's the middle of the night, confirm when I'll be there next, then tell her to go back to bed. Ten minutes later another call. 15 minutes and yet another. Lather, rinse, repeat. She has a clock, she has a watch (that she obsessively checks), she has a calendar and she has a window. There is no lack of visual cues as to what time it is and what day it is. Or she could ask. The problem is remembering what they tell her.

We’ve had the same conversation over and over. And we’ll have the same conversation again. It’s the nature of the disease. I’ve told her to first look out her window. It’s a big one and takes up almost an entire wall of her apartment. If it’s dark outside, it’s night time and she needs to go back to bed. If it’s light out, she can go about her day since her friends will be up, too. And to back all this up, I’ve written it down in neat little bullet points. I can’t get upset with her – it’s not her fault.

Her wanderings have made it necessary to increase her level of care. It’s also an increase in rent that puts us barely south of $4000 a month. If she would just stay in her room when it’s dark…

Nopity, nope, nope. Logic has no place here.

First comes love, then comes marriage.

Mom did all the normal 1950’s high school stuff. Poodle skirts with lots of petticoats that were starched to their shattering point. Cardigan sweaters, football games, pep rallies, sock hops. Watch the movie Grease and that’s exactly how it was. She says so, musical interludes and all. She went to class but that was simply a necessary evil. She had a couple of boyfriends; Skip was cute and Mike was her first love. And then the boy from California showed up in a powder blue convertible. John Casey was his name and from what she’s told me, he probably had a slight attitude problem. More on that later. Mom set her sights on him in part because she could just see herself in that convertible, silk scarf flying in the wind, red lipstick, and cat-eye sunglasses. Grace Kelly had nothing on her.

They got engaged during their senior year and had a huge wedding in February of 1957. Mom said she cried before the ceremony because she knew she was making a mistake. She told her mom that she didn’t want to go through with it and she was told to chin up and get out there; too much money had been spent and everyone was already there. Fairyland playtime had turned into reality and it wasn’t looking pretty. Mom sucked it up and the wedding was lovely. She looked beautiful and, because I know what he did to her, I think he looked like a tool. Her mom always regretted making her go through with it.

After the wedding, the newlyweds moved to Joplin, Missouri where John was going to work with his parents who owned a chain of 5 and dime stores. I don’t know if they had a honeymoon and she doesn’t remember anymore. Lots of crappy things happened during their year and a half of marriage; he didn’t allow mom to drive a car, and made her walk to work, he tried to shoot her dog but he was too drunk to hit the broad side of a barn, not to mention a cocker spaniel. That was the last straw and she filed for divorce. They didn’t have children and she didn’t want to take anything with her. She just wanted to get back to her mom and dad with her maiden name restored and her dog. Her mother warned her that John would show up at the airport and try to get her alone with him and that’s exactly what he did. Thank goodness she listened. We checked a few years ago to see what had happened to him. She was the first of four or five wives and he died when he was in his fifties. Good thing she and her dog managed to dodge that bullet.

February 1957

A little background

My mom was born in 1939 and is the older of two children. Her dad was in the military and got to participate in and survive WWII and the Korean War. The stories he would tell me were amazing. Partly due to his adventures, mostly due to his amazing ability to tell a six-year-old little girl war stories and hold her attention 100%. Her mom was a force to be reckoned with, there was nothing she couldn’t do, nothing she wouldn’t say. She could play piano by ear and loved nothing more than to be president of any club she was a member of.

Mom was a cute baby and a beautiful child. She loved to dance, loved dressing in the latest fashions, and loved being social. Engagement parties, wedding showers, baby showers, birthday parties, cocktail parties…you name it and Patty was down. She also theme-dressed; still does. Baby shower? Wearing pink or blue, thank you very much. Dinner out at a Mexican restaurant? A peasant top, flowy skirt, and brightly colored bangles is the only way to go.

Mom at about 6 months with her parents in Detroit

Today is her birthday

The past few nights mom has called at least twice between 2am and 4am, no emergency, so Thursday night I put my phone on mute. I woke up to 8 missed calls and 8 voice messages this morning. All the calls were from my mom between 4:55am and 5:30am. She started by reading back the note I had left for her on Tuesday when I dropped off her laundry. “It says here that you will be picking me up on March 18th at 4:00pm for my birthday dinner. I was just wondering where you are. I’m in my room.” The last one was, “I see it’s going to be your birthday and I’m supposed to be picking you up. I understand that you may not be able to be here, honey. I’m a little confused about the note.” She never gets upset, she doesn’t cry. It’s the spin that she gets herself into when she gets focused on something. It gets smaller and more concentrated until it’s no longer what it started out to be.

I'll be leaving to pick her up soon. I stopped by her place yesterday to remind her I'll be there today. I've made lasagna which she likes, and a salad which she doesn't. She'll pick at the dinner but she'll have more than one serving of dessert and then it'll be time to go. I'd like her to stay longer but one hour is her limit. All I can do is roll with it. 

My mom and me

Where we are now

My mom, Patty, is 78, has dementia, and uses a walker. She always described herself as a tall, slim blonde and that’s exactly how she will always see herself. She’s in assisted living; no need for memory care yet since she isn’t a flight risk. The one time she did venture out the front door of her facility she had to wait for someone to let her back in. The door wasn’t locked, and the handicap button worked perfectly; she just didn’t press it hard enough and didn’t remember to go to the default door opening procedure…reach out and pull. We have since gone over the mechanics of door opening a number of times so she doesn’t find herself in a similar pickle. She never goes outside, even to the inner courtyards, unless I'm with her so I'll never know if she figured it out. I do have to keep in mind that this is the woman who, even on her best and brightest day pre-dementia, couldn’t figure out how to use the seat-belt in my car. I drive a Honda. She did, too. Go figure that one out.