Category Archives: dementia

A Peek at Dementia

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A Peek at Dementia

Her mind is a jumble of thoughts that misfire and get hung up midway. She’ll start a task and forget what she was doing somewhere in the process. The other day I came in and she had all the ingredients spread out on the counter, she just didn’t have any idea how to put them together. She wanted to make a sandwich for her husband of 67 years. She’s probably made a thousand over the course of their marriage, this day the how-to’s of assembly escaped her.

She’s highly sensitive, aware of changes in the moods of those around her. Her feelings are easily hurt and she isn’t shy about expressing herself. I visit with her several times a week including one evening when the goal is to get her fed and dressed for bed. Getting dressed is a long process. It’s a series of repetitive steps that have to be done in a certain order. She can usually stay on task but there have been exceptions.

One day last week she insisted that she had to take her pants off over her sneakers. I had to explain why that would not work, she remained stubborn about it. Then it clicked for me, she must have been afraid of something. Fear is usually the root cause of her resistance. Earlier that week, her husband commented that he couldn’t tie her shoes any more, he was physically not able to do it. This is why she wanted to take her pants off over her sneakers, she was afraid of being shoe-less. Once I explained that I would put her sneakers back on, she complied.

She has dementia, a moderate case. The thing about dementia is that it only gets worse, never better. Sure there are days when she is more lucid but her baseline status will only descend from here. Any major change such as the death of her husband or a move at this stage will hasten the spiral and she’s one of the lucky ones.

Her family is engaged and loving. She sees a relative at least five times a week and speaks with them a minimum of three times a day for medication reminders. Companions like me visit her each weekday. She has a small army of compassionate caregivers and she still lives with her husband. There are millions of people facing this condition without these benefits, what will happen to them?

https://www.dementiasociety.org/

It’s estimated that 9 million Americans are living with some form of dementia. They don’t all have the financial and familial resources to remain safe and comfortable. Families are stretched thin trying to triage caregiving while managing their own lives including; children, careers, personal illnesses and a home.

https://www.alz.org/facts/

This situation will overwhelm our healthcare system within the next decade and beyond. Dementia, including Alzheimer’s, effects one in nine people after age 65 and that rate increases with age. People 85 and older have somewhere between a 30 – 50% chance of acquiring some form of dementia. This condition is impacting more people as life expectancy increases.

What can you do to prepare for this? I suggest having direct conversations with aging loved ones while they are well. Discuss specifics of financial resources, care preferences and have an Advanced Medical Directive and a Will. All adults should have these preferences documented.

https://www.medicinenet.com/advance_medical_directives/article.htm#advance_medical_directive_facts

If someone has been diagnosed, you may want to tour some facilities that specialize or have a wing dedicated to memory care. If you have a male loved that will need these services, get them on a waiting list as soon as it is reasonable. Many facilities have beds that are assigned male or female. Since women tend to outlive men, they have historically had more beds available to them. It can take years for a male patient to get into his desired facility due to a lack of available beds.

Many people opt to care for loved ones at home due to financial, emotional or other reasons. It’s wonderful if you can find a caregiver within the family. At some point that person will need assistance as well. AARP has put together a thoughtful list of resources for caregivers.

https://www.aarp.org/caregiving/local/info-2017/important-resources-for-caregivers.html

To all the caregivers reading this, you are not alone. Please take a moment for yourself to find support. When you need help, ask for it from those that can assist. That may be an individual, an agency or a non-profit organization. When you don’t need help, prepare for when you do, your work is so important. Self-care is not indulgent, it is a necessity.

 

Photo Credit: Copyright: <a href=’https://www.123rf.com/profile_victor69′>victor69 / 123RF Stock Photo</a>

 

 

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Say “Uncle”

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Say “Uncle”

When I was a kid saying “uncle” to someone was the verbal equivalent of waving the white flag of surrender. My actual uncle took great pride in hearing the kids in his life scream or giggle cry that in the middle of a tickling frenzy. The tickling got way out of hand. It turned into a battle of wills between the victim and their own bladder. Many of us lost the internal conflict, there’s only so much tickling a kid can take before they spring a leak.

Similar games were played in my uncle’s pool. This added a whole other level of danger to the activities. There were multiple near drownings. Then there was that time when my cousin got chased by an angry swarm of hornet’s after he disrupted their nest. That wasn’t actually my uncle’s fault, it just happened in his yard. Joey had more than 30 reminders of that calamitous event. Eventually the swelling went down and the pain subsided. It was most unfortunate that some of the hornets found their way into his swim trunks. I bet he still can’t pass a nest without a flashback.

My Uncle was a loud, gregarious, larger than life personality. I remember childhood holidays spent at his house with a heady cocktail of emotions. Angst and wonderment were abundant in equal measure. We were amazed by the gourmet chef inspired meals and horrified by the table topics at dinner. It was a hazing ritual with elements of cannibalism and we all wanted to avoid the hot seat.

For the bulk of my childhood, Uncle Jack was married to Aunt Dolly. That marriage went off the rails some 30 years ago but the memories remain. Aunt Dolly was from the South and her mother Mimi made the trip North at least twice a year. I loved their accents and their sweet smiles. I had never heard of ambrosia until they came along. Who doesn’t love tiny marshmallows in a salad that doesn’t even pretend to be healthy.

Aunt Dolly told me I had a face like Venus, the Goddess of Love. She said that when I was in the height of my awkward ugly stage and no one was sure if it would all work out. She gifted me with a ray of hope that I would not always be an unattractive lanky tween with buck teeth and stringy hair. She saw my potential and it wasn’t just looks. She noticed when I did more weeding than the other kids and argued with my uncle to better compensate me. She paid attention to me when no one else did and I will always cherish her for that.

We spent a lot of holidays at my uncle’s house growing up. He had the big house with the pool and plenty of space. They had an Atari gaming system which was the sh*t in the early 80s (Breakout and Space Invaders, the best). I was usually by myself because the other kids divided into two groups of two. My brother with our cousin Joey and my cousin Jenny with Tammy, Dolly’s daughter from a prior marriage. They weren’t particularly mean, it was just clear that I wasn’t in the mix. By this point, I learned to read people and saw myself out before anyone else could make the suggestion. I split my time between Atari and my grandparents.

Meal times were the absolute worst. It was like a twisted family style version of Survivor minus the camera crew (or the exotic location). Most of the adults were inebriated by the time dinner was on the table. Dinner time always got pushed back to some ridiculous time like 9 or 10 O’clock, apparently drunk people are lousy at keeping track of time. My uncle was a fantastic cook so that offered some redemption.

While we ate, the topics would vary between politics and religion. If those topics got stale then someone at the table would be fodder for the discussion. This was awful. My uncle would spew merciless hateful nasty comments at whomever had the bulls eye. It was usually, Tammy. We were all too scared to speak out against him. This was his house, his food, his f*cked up show. I wish I could go back to 10 year old me at Christmas Dinner and say “what is your problem man, why do you need to pick on a 12 year old every damn holiday”. No one did that, that girl was verbally abused at 90% of holiday meals. I’m ashamed for all of us.

Like most people, my uncle wasn’t all bad. He was always thoughtful when it came to gifts for my brother and I. One year he gave us 10 speed bikes for Christmas. For our birthday, he gave us season passes to Great Adventure. Those gifts meant the world to us and gave us experiences and mobility that we would not have had without his generosity. I know he helped my mother financially from time to time, despite their thinly veiled animosity.

My mother hated my uncle. She would lash out from time to time but not enough to stop taking us there for holidays. They would often spar in alcohol/dysfunctional family fueled debates that were horrendous to witness. My mother stopped drinking in the 80’s and our trips there stopped a couple of years later. They disagreed on everything from politics, money and the best nursing home for Nana. They have remained on non-speaking terms since my grandmother died in the early 90s.

I haven’t talked to Uncle Jack in years. After his second marriage dissolved we lost touch and eventually he moved to Florida with his third wife. I have some contact with my cousins and his daughter contacted me this past weekend to tell me Uncle Jack was asking about our side of the family.

Turns out the third wife was on an information gathering mission. Honestly, I’m not sure if my uncle even inquired about us. When we spoke on the phone she cautioned me that my uncle is “forgetful”, that is code for dementia. My grandmother (his mother) had dementia and his wife wanted to know if my mother showed any signs. I haven’t noticed any at this point and I passed that along.

My uncle definitely has some dementia, it was evident to me in the few minutes that we spoke. His wife told me that they plan to move from Florida to Delaware in about 6 months. I cautioned her that a move would be disruptive to him. I work with people that have dementia and change is a real struggle for that population. He will likely decline from that move and he won’t bounce back, they never do. She has family near where they are moving so I understand the practical points.

In the handful of minutes I had with my uncle, I told him things that I thought would be meaningful for him. Like how I always think of him when I hear “Blue Christmas” by Elvis Presley. He wore that record out every December. I also told him how he made the best mashed potatoes that I ever had and that I was not able to duplicate them despite my best efforts. He chuckled out those memories and I think they resonated with him, if only for a moment. I see a white flag in his future and it’s sad, uncle.

 

 

*Photo credit attributed to: This is the Front cover for the Single Blue Christmas by the artist Elvis Presley. The cover art copyright is believed to belong to the label, RCA Victor, or the graphic artist(s). Front cover of picture sleeve of original single release of Elvis Presley’s “Blue Christmas” (RCA Victor 447-0720)

 

Dementia

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Dementia

Dementia is a beast. I have a client that I visit a couple of times a week, she has moderate dementia. I’ve been visiting her and her husband for almost a year and we’ve gotten very close. She’s a bit feisty and I like to tap into that side of her personality, she seems happy there.

Last week we were walking in the hallway (“airing out” as we call it) when I had a brilliant, awful idea. The residents put a lot of thought into the decor around their front doors. Wreaths, plaques, photos and other seasonal tchotchkes line the narrow shelves that flank the apartment doors. I suggested that we switch a few of the wreaths around and watch to see what the residents would do. She thought it was the best idea ever. Of course we didn’t do it, we only dream of being that rotten, but it made her laugh.

She turned 80 this past weekend. My friend celebrated with her extended family and she sounded happy when I called her. I was surprised she picked up the phone. She is very picky about which calls she takes and I didn’t think she would recognize my name on the Caller ID. I suspect her family urged her to answer.

That’s the awful part about dementia. You forget – people, places, names, events….where the bathroom is, what’s a brush, how to read. My friend still recognizes that my face is a friendly one and she enjoys our time together. She just can’t connect all the dots.

Today she asked me if I liked any boys. I told her I still liked my husband, she chuckled. She asked again a few minutes later and I simply said “not really.” I never press a person with dementia or try to explain complicated situations. I’ll distract them to try to calm them but I avoid correction. Any change gets her antsy. It could be a different pill container or a blue cup instead of a red one, change is hard.

Last week I was straightening up the apartment and I noticed a pat of butter in a dose cup. The kind of cup that cradles the lid of cough medicine. There sitting on the bathroom vanity was a pat of butter in a dose cup. That’s what dementia looks like. You try to make sense of it but it in the end rational thought does not prevail. You just find the logic where you can and hope to ease the stress and anxiety with some laughs along the way.

My friend wrote a note to me on Tuesday. She wrote in on a napkin, her way of making me promise I would be back soon. This is what she wrote:

 

“I will come

on Friday.

Hurry Up or Else!

Keep this.

Love, Helen”

 

 

Sex Bomb

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Sex Bomb

I had a visit with an elderly couple today. I see them twice a week. I make them lunch, do some laundry but my main job is to socialize with the wife. Helen tends to get a bit down sometimes and dementia is causing her to become forgetful. Her husband, Ralph, wasn’t feeling good today and I wanted to lighten the mood a bit.

One of the grandkids got them an Echo Dot for Christmas. I thought some music might make my friend smile a little so I had Alexa play some Paul Anka, Frank Sinatra, The Doobie Brothers (I was hopeful, she didn’t like them) and finally some Tom Jones.

The first Tom Jones song to come on was “It’s Not Unusual” and she loved it so we kept Mr. Jones on. The next song was one I never heard of – “Sex Bomb”. My ears did a double take and I instantly thought….Houston we have a problem. I looked over at my octogenarian friend and she was dancing. Here’s the chorus in case you aren’t familiar –

Sex bomb, sex bomb you’re my sex bomb –  You can give it to me when I need to come along (Give it to me) – Sex bomb sex bomb you’re my sex bomb – And baby you can turn me on (Baby you can turn me on)

Enjoy!

B-I-N-G-O

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B-I-N-G-O

BINGO is basically Lord of the Flies for octogenarians. I took a client tonight, she lives in an Assisted Living Facility. They had door prizes, gift baskets and a 50/50 raffle. It was a sold out event at $20. a person plus the extra fees – dabbers, raffle tickets and additional boards. Ladies had their hair done, the nice cardigans were worn and I detected a bit of Old Spice in the air. This was a night out, it was festive.

I planned to get there half an hour before it started but afternoon traffic set me 10 minutes behind schedule. My friend was ready to go when I got to her apartment. She uses a walker so it’s never a fast hustle, more like a slow shuffle. We got to the registration table 5 minutes after it opened and we were in the first half of the crowd. It’s really important to get to these events early so my friend can sit within close proximity of her walker. She needs an end seat and 75% of the population at BINGO needed an end seat. I still move quicker than most of them so preferred seating was secured. I may have gotten some side eye from some of the residents, I pretended not to notice.

I got Helen settled and then went to the BINGO buffet to get some snacks. It always surprises me how they offer up all these high fat, sodium and carb filled options to a population which is most likely supposed to be on low-sodium or low fat diets. Whatevs, my blood pressure is fine. I loaded the plate with mini quiches, taco innards, pizza pitas, soft pretzels and mystery juice (it remains undefined with subtle notes of cranberry and institutional seltzer). Helen was happy for the pretzel and juice, I kept the rest (regret is setting in).

Back at the table I noticed the BINGO cards and instructions which included a coupon for a McDonald’s breakfast. This was a score since Helen loves their pancakes and sausage. I typically treat her to it once a week, saved myself $4.02 with that gem. That’s not all though there was also a notepad listing the contact info for the local politician that supplied the freebie. I kept flashing back to BINGO scenes from Better Call Saul.

 

There were 10 games to be played along with an intermission. The event was supposed to run from 4 – 6pm. We weren’t hearing any numbers being called until 4:45, the crowd was getting antsy. I find it interesting that these people that I see slowly, sometimes painfully shuffle through the halls, suddenly develop cat-like reflexes and hawk vision when BINGO starts. In the first 5 games, Edna, a “known gambler”, won twice. People started to talk in hushed whispers that don’t sound hushed when the hushers are hearing impaired. I could hear the chatter on the other side of the room. The host joked that Edna should be careful at intermission. Oddly enough, after intermission, it was announced that Edna donated one of her prizes to be auctioned off as another door prize. True story. I don’t know the full story on Edna and I still can’t figure out how she rigged the game.

Good news is Helen won a round in the second half. Well we both did as I made sure she was staying current. Unfortunately there was another winner for the same game. They resolve that by having each winner pull a card from a deck and the highest card wins. Helen pulled a 5, I knew we were screwed. She got a consolation prize, a certificate to the in-house beauty salon. She won’t go, she’s had the same lady do her hair for at least 30 years. She should trade it for a meal voucher. She just needs to find a neighbor in need of having her hair set and she’ll have some leverage.

The last game was a full card which is like a marathon in the BINGO world. Someone needs to complete an entire card before the game is over. I takes a solid 15 minutes. Doesn’t sound like much, but 15 minutes at the end of BINGO in a retirement home feels a bit like infinity. We powered through with minimal moaning. There was the sound of popping knees, various crackling noises and some whispered curses as people hoisted themselves up when the game ended. Helen and I managed to get a good jump on the elevator traffic and I got her back upstairs to her apartment. I’ll be bringing her some McDonald’s hot cakes and sausage when I visit again on Friday.

 

 

Middle School (pssst….it NEVER ends)

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Middle School (pssst….it NEVER ends)

Today I witnessed something that made me shudder and think….G-damn this middle school mentality never ends. I was visiting an elderly client, she isn’t quite 80 yet, so not that old (the definition keeps getting pushed back…..pretty soon everyone will be young or middle aged until they reach triple digits then and only then will they be considered elderly). I was slightly horrified to realize how much an assisted living facility (ALF – wait, wasn’t that a TV show…) can mirror middle school.

The hallways are filled with seasonal decorations. Each apartment door is decked out for whatever holiday is up next. Some of these people get carried away and I think there must be some kind of secret contest or perhaps it gets discussed at dinner. Dinner is a big deal. The time and table placement of the reservation reflects some kind of ALF hierarchy which I have not yet decoded. My clients aren’t regulars in the dinning room and I think it’s decreasing their stock.

There are popular residents and those that struggle with physical issues and/or social anxiety. Don’t get me wrong, some of the more outgoing residents deal with physical and social issues, they just soldier through it and show up at dinner and bingo every chance they get. The introverted shy gals like my friend can get lost in the shuffle. Pair a quiet  personality with a touch of dementia and the friend list gets anemic.

As we often do, Helen and I were playing table top shuffleboard in the lobby. We do this about twice and week and we both enjoy it. We were having fun, talking smack to each other and taking turns playing poorly, when a group sat at a nearby table. It started with just two people – Janet and Bob. Janet was talking about a recent hospital stay. She and Bob compared notes on blood thinners and MiraLAX. It was entertaining to listen to and not an uncommon conversation given the demographic.

Soon the two were joined by 3 more and the topic changed to a recent party. One of the ladies just had a blow out celebration for her birthday, a surprise party. Over 50 people attended and it took her more than an hour to read through all of the cards….she mentioned that no less than 3 times. I wanted to shout “we heard you the first two times Marge” but that seemed inappropriate. I could tell my shuffleboard partner was not happy. We played one more round, hearing details about a cake and how good the food was, then we headed upstairs to the apartment she shares with her husband.

As we were slowly shuffling out of there, my friend whispers “have you ever felt out of place?” to me. I knew she was upset about not being invited to the party. I got her upstairs and we talked it out a bit. I handled it the way I would with my kids who are both deep in the throes of middle school. First I validated her feelings. “Yes” I said, “I have felt out of place and it sucks. I’m sorry you are feeling that way.” Then I suggested a few things and gave the other people the benefit of the doubt. I said, “I don’t think they were discussing the party to make you feel bad. They were probably just rehashing the experience and not considering how it might make others feel.”

My friend was grateful but was still upset and I wanted to help her beyond this 20 minute conversation, if that is even possible. I suggested the same things I have to my daughter in similar situations. Insert yourself into the activities so you are not overlooked. Make it a point to go out and try new things. Go to dinner, bingo and think about focusing on one or two friends instead of trying to get into a larger social group.

The only thing worse than talking to your kids about the horrors of socializing in middle school….is talking to a nearly 80 year old about the same damn things. It broke me a bit but I kept it together. I gave her a hug, told her I loved her and that I would be back on Friday. Oh and I gave her a big bowl of ice cream because sometimes, ice cream gets you through the tough stuff.

 

My Boring Life….

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My Boring Life….

I’m bringing boring back. Too much crazy sh*t happening in the world, makes me want to cover my ears and scream “I can’t hear you!” Since people get twitchy when you cover your ears and scream in public, I’ll settle for a blog post. Here is a glimpse into my glamorous life folks, hope you have popcorn.

6am wake up so I can be a human alarm clock for my 12 year old daughter. Why do I do this well she wouldn’t get up otherwise so there’s that. Also, we don’t allow our kids to have their phones, the modern alarm of choice, in their room overnight and I’m too cheap and lazy to buy a stand alone alarm clock. I greet my grumpy tween and go back to bed for another blissful 30 minutes.

I manage to get the kids to the bus stop on time go back home. I don’t have to leave until 10:30ish for a client visit so I spend a few hours preparing for a fund-raising event scheduled for this weekend. I’m tracking down the people who haven’t paid yet to make sure they haven’t decided to ditch at the last minute. We have a wait list so it would be nice to get those people in if we can. I do a few promos on FB, some modifications to the donor sheet and a delivery of an auction item. Now it’s time to go to the job I get paid to do.

My visit today is to a 79 year old woman and her 88 year old husband. The woman, Helen, has mild dementia and her husband, Ralph, stays in bed most of the time. I am the entertainment. I am the social call for a lonely woman who struggles with depression. My goal each visit is to get her to eat and to stimulate her mind through some social activity or puzzles of some sort. I make her laugh through the inconvenient hardships of old age. She has a hate-hate relationship with her Depends which is something we talk about at length. She sometimes uses Vaseline or Desitin to relieve the chaffing the elastic causes at the leg openings. A couple of weeks ago she tried to put toothpaste on her nether regions. She’s in pain from a lifetime accumulation of injuries, aches and pains. The body wears out and it’s tough to witness. It’s worse when the brain goes along for the descent.

Most days it takes a solid hour to get my friend fed and dressed. Once we do that my goal is to propel her out the door and into the lobby. The community they live in has a front lobby that includes table shuffleboard. We like to play while eavesdropping on whatever is happening while we are there.

Image result for pictures table shuffleboard

Last Friday things got interesting when one of the residents went rogue and wandered off. Lorna is about 93 and walks fairly slowly with the help of a walker. Somehow she managed to slip by the front desk and get an impressive distance from the place. We were witnesses to the “chase” and subsequent capture. Then when I left, Helen and Lorna chatted about it.

After my visit I made a beeline for home, I like to be there when my kids get off the bus. Today it was just my son as my daughter had an activity. At about this time I got a text from the hubs….no words just this –

IMG_4074

That’s his subtle way of asking me to buy something for him. I replied with detailed instructions on how to open the canister and proper gum chewing etiquette. No reply, sigh.

Soon after that request I get a call from my mother. She was supposed to have cataract surgery today but it got cancelled because some family member of the surgeon had the nerve to die. That’s pretty much how she spun it. In 13 minutes she covered a lot of ground mostly how overwhelmed she is and how she wants to move. I bought the house she is currently living in because for 8 years she bitched non-stop about the last place…..and so it goes.

I rush out to get kid number two from her afternoon activity and I have about 50 minutes to make dinner and catch up on email. Badda Bing Badda Boom I make dinner. Freakin’ magic I tell you. I never know what I’m going to make until it dawns on me that it is my job…..someone has to make dinner, oh that’s right, I’m that someone. I usually don’t have a plan and somehow it works out. Tonight was pan sauteed lemon chicken in a white wine reduction (yes I made it sound fancy – I basically threw sh*t in a pan) with green beans. It was pretty good, a solid 6. They can’t all be 10s.

Then I started to load the dishwasher from the sink backlog. As I was doing this task my phone rang so I asked my daughter to answer it. She she went into a complete panic….like the phone was made of Plutonium (Pu, how appropriate)….she did a total half ass job with the conversation. So for half an hour, my husband and I took turns calling her pretending to be looking for ourselves so she could practice. She hates me a little and said “maaaahum” the way that 12 year old girls do.

Time to take the oldest to soccer practice. Drop him off at the field and go home to feed 3/4’s of the family the meal that I dreamed up 20 minutes ago. I set a plate aside for my son so no one eats his portion. In the blink of an eye I’m back in the car to fetch the boy. I go to the practice field where I dropped him off at 5:30 and he isn’t there, neither is his team. I scan the field, recalling the shirt he wore to practice. I just bought it this weekend so it’s fresh in my mind. It’s a heathered blue, with gray tints, it has a pocket left side of the chest and a thin line of white around the sleeves and the waist, gray shorts. I keep scanning, there are 5 boys on the field, none of them familiar.

I call a friend, her son practices at the same park during the same time for a different team. She picks up her phone and warns me that I’m on speaker phone (because I am the friend you must warn) her son didn’t go to practice. I tell her I’ll update her later, I have to go and manage one “sh*t” and an apology as I end the call. I drive to another field at the park, wrong kids, not our coach. I call my husband, he instantly starts screaming about our son not taking his phone. I remained calm said he left his phone behind because he needed to charge it. I decide to circle the park another time and get off the phone with my husband because his panic won’t help me now.

I drive slow, wondering if practice ended early. Would someone offer him a ride? He wouldn’t take it. I know my kid unless it is my close friend whose kid skipped practice, he won’t get in a car. He knows I’m coming to get him at 7pm he will wait. I consider the pavilion and the play ground. Without a phone he could have lost track of time and decided to wait it out there. I glance in that direction, bunch of littles and their parents.

I decide that I will circle the park one more time, slowly and deliberately because I can not bear the thought of my kid gone. I can’t. I can’t imagine how parents of missing children get through 10 minutes let alone hours, days, months and years. It would consume me. I have to place these thoughts on the back burner as I look for my son with heightened concentration.

I see that new H & M shirt that I just bought on Saturday. Out of the corner of my eye, I see him and I park the car and exhale. I call my husband and text my friend and the world begins to spin once again. A few minutes later he comes to the car. He knows I was worried. He apologizes and tells me it wasn’t his idea to switch fields. Because that’s the kind of kid he is and I am so grateful.