January 27, 2015:

I am in disbelief that I wrote this almost seven years ago. Sister (Velda Brown Modlin) is no longer imprisoned by Frontotemporal Dementia, having passed away on September 6, 2013. This is only one of many stories about her and the horrors of this disease. But, in spite of the mental delusions and later on, the crippling physical effects, Sister remained kind to all and grateful for all that was done for her. I share this to honor her memory. And to make myself smile. If anyone who reads this is being/has been impacted by the harshness of this disease, it is my hope that you learn(ed) patience and resilience. Through the seven years from Sister’s diagnosis until her death, I truly began learning both. I still am.

Journal Entry   March 25, 2008

Good Friday needs a new name. Although I take it seriously, it is ironic that the day that Jesus was crucified is considered ‘good.’ Without that in mind, considering what this past Good Friday (March 21) entailed for me, I seriously may no longer call it that.

It wasn’t so good. Neither were the last couple of hours of Good Friday, 2002—March 29 that year. (Wes and Andy died on that day.) But this year’s Good Friday (March 21) didn’t give me much time to reflect on that, now almost six years ago. Maybe that was a ‘good’ thing.

I should have known something was amuck, or would be, that the day was only going downhill, when I heard the thump, thump under my car. I should have just turned around and gone back home—I wouldn’t have wasted much gas; I was less than 1/5 mile from my house. Hope and I were on our way to pick up my sister to take her to Wal-Mart for a pedicure. That way I could shop for groceries, hers and mine, and this year’s Easter treats with my sister sitting down. It seems to be what she does best these days.

Anyway, the thump, thump was the sound of my tires rolling over two very playful squirrels, enthralled by their morning frolic in the street. My gosh! Why do they have to frolic in the street?! I immediately looked in my rearview to see one flattened, the other bit by bit (literally) trying to make its way towards the curb. All I could do was silently cry, so as not to alarm Hope. She is so intuitive and sensitive that I wouldn’t dare let her in on my grief.

She’s not old enough to understand how stupid squirrels are—to her they’re just the star of a poem I recite to her when we’re outside and see one scampering about: “Grey squirrel, grey squirrel whisk your bushy tail. Grey squirrel, grey squirrel whisk your bushy tail. Wrinkle up your funny nose; hold a nut between your toes. Grey squirrel, grey squirrel whisk your bushy tail.”

These two won’t be doing those things anymore.

I turned up the music and cried for another mile or so, then remembered what Andy had told Wes many years ago when Blaine flattened one. Wes was the emotional one over this squirrel, which surprised me at the time. Andy took on the logical role…another surprise…and reassured Wes that “there were millions of squirrels.” In other words, “Get over it.” I decided to take Andy’s advice to heart. My day was going to be too busy to fret over two bushy tailed, funny nosed…stop Beverly…They aren’t that cute…especially when flat.

Have I mentioned that it was 9:40 a.m. when this occurred? We were supposed to pick up my sister, Sister, at 10 a.m. One of our dear cousins was to meet us outside Sister’s ALF (Assisted Living Facility) at that time also; she wanted to give Sister’s room a thorough spring cleaning while Sister was away being pampered. (This would be the all-season cleaning actually, as Sister only lets the cleaning staff at her ALF spot clean!)

I pulled into the parking lot at 9:50, having just received a call from this cousin that she would now be late. Precious time, ticking away…oh, one small detail—Hope had been awake since 5:20 a.m.! While I waited, a few phone calls would help time pass as Hope listened to Kidstuff on Sirius. At 10:15 the front passenger car door opens—it’s Sister. I didn’t go in to get her because I always have to call ahead to make sure she’s dressed first. The receptionist had informed me that she was having breakfast and would lead her to my car afterward.

I mentioned to her that I had just spoken with my husband Blaine’s uncle, telling her that Blaine’s last surviving great uncle had passed away. After reminding her who this great uncle’s children were, her remark was, “I know they are going to miss Blaine.” She kills Blaine off now at least twice a week. I didn’t even take time to ask what she thought had happened to him this time, I just said, “Sister, Blaine is fine. You’ll see him on Sunday.” Oh boy.

Okay, it’s only 10:20 a.m. and we’re already in la-la land. The day will be long…and difficult.

Understatement!

The cousin finally pulls in the parking lot at 10:30 a.m. I am trying really hard not to be angry…pissed is the best word! Giving her Sister’s room key and practically throwing the dust buster at her, we are finally on our way to the place I really want to be on a Friday—Wal-Mart. But I do have to buy a few more of Hope’s Easter basket goodies and some groceries, so I’ve convinced myself that it’ll be fine.

As we’re making our way out of the parking lot, Sister tells me she ate a big breakfast: scrambled eggs, grits, bacon, sausage, and toast! Wow! I’ve told her that I’m glad she’s eaten well that morning; most days she doesn’t make it downstairs for breakfast. We make three turns, but are a little further down the road this time—maybe a half mile before our next obstacle presents itself. You’re thinking squirrels…I wish.

Sister tells me that she feels sick, like the throw-up kind of sick. Quickly I reach for the Marshall’s bag on the floorboard behind me, dumping out the contents that I’ve been trying to return for about a month. Thank goodness it’s a big bag. I’m thinking Big Breakfast + Sick Stomach = A Lot of Throw-up!

I quickly pull off at the first place available, a church parking lot. Sister gets out of my car, and Hope and I wait very patiently. Sister turns around, leaving clean grass, and gives me the ‘guess I’m okay’ shrug. I ask if she’s sure she wants to go on to Wal-Mart and she looks at me like I’m stupid. So we go onward…it’s now 10:45 a.m. We have been gone over an hour, and we haven’t done anything yet.

I do dearly love my sister, whom I affectionately call ‘Sister’, just in case you haven’t noticed. I couldn’t pronounce her real name, Velda, as a young child. She’s always been Sister, always will be to me. She is almost eleven years older than me, and as a young teen, I witnessed her make choices in her life that I knew I would make differently. I used to tell people that she got the beauty and I got the brains. I used to tell my friends that I loved her, although I didn’t like her. Now I know that we were just very different people, as we were supposed to be.

I do not make fun of her; if it appears that I am doing that here, I’m not. I have to vent and writing this story down is a way for me to do that. This disease, frontotemporal dementia, sometimes feels as if it is as hard on me as it is on her. This day, this Good Friday, 2008, was probably the second toughest day I’ve had with her disease (the nine days she spent in the hospital awaiting a diagnosis and realizing that I would now be responsible for her life and well-being were #1). See, I said “with her disease.” I know that this person is not my sister; this person is the horrible effects of a disease that has stripped away who she once was. She has been robbed of her life and if anything, I am angry for her, not at her.

Anyway, we’re now on our way again. The ride is mostly sane, no comments about one of her ‘children,’ biological or adopted. (She’s never had either.) And she hasn’t killed off Blaine again. We’re less than one minute from Wal-Mart when she grabs the bag from under her feet and, here it comes! I’ll try to spare the details, but it was a lot.

I’m trying to keep cool, which as of late, I’ve come to handle pretty well about anything her physical (and mental) state throws at me, no pun intended. I’m actually more concerned about how Hope will react, but she seems to be fine. The bag is a big one, thankfully, and Sister is doing a good job of keeping it all contained therein.

We’ve now pulled into the parking lot and I tell Sister that I’m going to park in as private a spot as I can find, so that we can decide what we’re going to do. Just as we come to a stop, her last hurl does not go in the Marshall’s bag; it has found its way down her newly-gifted, rose-toned, chenille sweater. I sigh in silence—I’ve lost count of how many times I’ve sighed since leaving home now almost 1½ hours ago…did I mention that we still haven’t accomplished anything yet?!

“Okay Sister, we have two options,” I tell her. “We can either turn around and go back to Forest Heights (her ALF) or, if you feel like it, we can proceed to get your pedicure.”

I’m thinking, like most people, she feels better now that her overly-full stomach is empty.

I tell her this with the patience of Job. I promise I do. I am amazed at how well I’m handling this.

I go on. “But, if you do, we have to get you cleaned up. So, first, do you feel like going to Wal-Mart?”

Of course she does!

“Well, you have a fleece jacket with you. That will do. Let’s go find an even more private area, get your sweater off, get you cleaned up and your fleece on, and zip it up. Then we’ll go on into Wal-Mart, get you a diet Coke, and get that pedicure underway.”

By now I am in need of a massage.

Now I know you’re thinking, “Why is she going into so much detail about this phase of the ordeal?” It will all be worth it, I promise. As I stated before, it helps me to write it all down.

We find a really private spot behind the movie theatre, right beside the dipsy-dumpster…very convenient! I say a prayer of thanks for having Hope—right now it’s mainly because I always have wipes in the car! In less than 5 minutes we’re ready for Phase 3 of our morning…it’s now 11:50 a.m. You do the math…

A trip to the potty for Sister and a diet Coke and a peanut butter cookie for Hope from the Subway in the back…life is good. Until we pass by the Easter Bunny. Hope detests costumed characters—all of them. Now she doesn’t lose it, but she was adamant that she “not like that Easter bunny.” We zigzag around Mr. E.B. and proceed back to the front of the store, to settle Sister in for her pedicure…to allow me to breathe without sighing.

Phase 3 passes, thank God, without a hitch. Although we are now after the noon hour, Hope is so anxious about the guy in the bunny suit that she remains on alert, even though she is getting very close to what would be her naptime. And, the good person-in-charge in the grocery department (or someone in the ranks at national headquarters) has decided that on this day, sample PB&J sandwiches are in order. So Hope’s lunch is taken care of. And, my brain is able to take somewhat of a break for about an hour as we are on repetitive recitation: “Mommy, I not like that Easter Bunny. Not want to see him.” My constant reply, “I know Hope. We are not going to get anywhere close to him.”

I actually gave myself permission to laugh out loud, thinking that things have to get better from here on out. Sister is content getting her pinkies pedied; I’ve checked on her a couple of times. I have high hopes. I am a half-full person after all.

Amazingly, we are checking out just as Sister’s toes are dry! Alleluia! Now she’s wearing those cheap, thin as a sheet of paper, flip-flops you get when you have a pedicure, so I know there’s no way she can walk out to the car. I instruct her to wait for me to pick her up…simple enough. Well, that works out and we leave Wal-Mart at 1:10. Did I mention that I pulled out of my driveway at 9:35? Yes, I know I did! I want to curse at this point but Hope has been so good and I’m just trying to go with the flow.

Flow. Did I really have to say that?

We’re all starving and are headed to the Chick-Fil-A drive-through. No, I don’t usually allow my toddler to eat in the back seat of a moving car, but my desperation to get Sister back to her ALF has taken precedence over that detail. Plus, Sister can’t walk in those flip flops. I’ll pull Hope’s chicken nuggets and fries apart as much as possible.

We make two turns out of the parking lot and onto Hanes Mall Blvd. Alas, Sister feels sick. Again. Oh dear! I make a right turn onto a fairly new street that leads to several businesses and restaurants and pull over onto the side of the street. Of course, I did not see the storm drain on the passenger’s side of the car. Sister opens the door and, still in the make-shift flip flops, well…it could have been worse.

She only twisted her ankle, slightly. She didn’t fall and she did not lose the flip flop down the storm drain. I am done.

Now, not with the patience of Job or anyone for that matter, I tell Sister that we are going on back to her ALF right now! She doesn’t need to eat with a sick stomach and Hope had a peanut butter cookie and several samples of PB&J sandwiches. She’s fine. I do not say this with a tone of anger, it’s more like exasperation. IT IS EXASPERATION!

Did I say I’m done, yet?

It is now almost 1:30 p.m. Hope is clearly exhausted, and she quickly falls asleep as we head toward our destination. Quiet envelopes the car. It is wonderful. If I weren’t driving, I would take a nap. Yes, Sister is tired too, but thankfully, not ill.

I decide it best, since Hope needs this afternoon nap, to drop Sister off at the front, help her get the few things she’s bought, and walk her to the door. Before Sister opens the car door, Hope is abruptly awakened from her nap and begins screaming fiercely. I look back to my right at her and observe with my eyes bulging that the passenger’s seat, where my sister is, of course, has been moved as far back as possible and is crushing Hope’s little legs! I can’t get out of the car fast enough!

OH MY GOD!!! I really don’t like using those three words together, but this warrants it. Poor baby. I rush to her aid, yelling at Sister to get out of the car so that I can move the seat forward off of Hope’s legs. Thankfully, Sister doesn’t trip this time (no storm drain) and Hope only has pressure marks from the seams in her soft leather shoes. And she settles down fairly quickly. I do thank God that she is such a great child!!! I admonish my sister as lovingly as possible, so ready to have this *#@! Friday behind me!!!

These are the highlights of this Good Friday…I have no more. We are home and it is a beautiful day to have a Chick-Fil-A picnic on the porch. Yes, we finally made it through the drive through. Between bites I ask, “Hope? Can Mommy have a nap?”

See also “Velda, Queen of the Elms.”