Does solitude always mean being alone?

When some people hear the word solitude, I think the mind automatically thinks lonely and/or alone. At least my mind does. But recently I have had 2 experiences where one could say I was all alone, but in reality I was not. There was no talking, no conversation to be had. Just the quietness of the moment. Complete solitude.


Lunch at Perkins this week started out rough. I knew something was off when I pulled up next to my mom and my dad was not in the car. My mom explained that dad was having a rough day and was angry with her for whatever reason and had decided to go into the restaurant. I made my way in, looking around for him and found him in a booth, seated directly at a window that was facing my mom. Not sure if it was a coincidence or not, but there were several other available seating options.


I think I scared my dad and his thoughts because when I bent down to hug him, he jumped. I asked him how he was doing and he said "not good".  And that was it. I tried to engage a few other times about the boys but he seemed so distracted by whatever it was he was thinking. So I left it alone and ate in silence. As did he. I remember sitting there and wondering if I should bring up something to try and talk about like the weather, why he was upset, or even how the food tasted? But then I realized it is ok to just sit in the moment. Sometimes those are the best of times.


The second time was over the weekend while visiting my parents. While everyone (brother, sister-in-law, nieces, and the boys) were all in the back family room, I found my dad all alone in the front living room. He wasn't doing anything, just sitting in his recliner with his hands tucked under his legs. He looked like he was in deep thought, so I didn't bother him. I sat down in the recliner and watched him. I wondered what he was thinking, if anything at all. I wondered if he was listening to the commotion in the other room and wondering what was going on. I wonder if he was trying to remember who all the people were in the house. I wondered if he was thinking about the upcoming basketball games (March Madness!!!) I was trying so hard to figure out what it was he could be thinking that I lost the importance of the moment. I got my phone out and snapped a picture of my dad. I have looked at it several times over the last week and it makes me teary. My dad may be feeling alone with this disease. Not knowing who the people surrounding you are has to be scary and lonely. Not knowing what the future holds can be scary for all, but I imagine losing your memory has to be the loneliness of all.
In that moment of solitude, I was at peace. Knowing my dad was right there with me, safe and protected was all I needed at that moment. And that solitude was fine with me. (silver lining.)

The man in the mirror

We were finally happy to hear my dad say that the "people" living in his back bathroom had finally left the coop! It was a long and painful experience to say the least. Seeing my dad point to himself in the mirror and ask us if we saw "them" was sad. That is the best way to put it. We knew he was just seeing a reflection of himself, but he was seeing my uncle, a childhood friend, and then ultimately it became someone he did not know other than a stranger that coincidentally wore the same clothes as him.

 
Different stories came and went with these house guests. Some days it was my uncle Butch living there and then other days it was his childhood friend, Phil. Before long, my uncle left and it was just the old friend. But eventually he left too. But before we counted our lucky stars, the "stranger" moved in. My dad did not care for the fact that he wore the same clothes as him. He didn't like the fact that he lived in the closet in the bathroom where he could see my mom changing and he didn't like the fact that this man was taking things that didn't belong to him.


There were also many different versions of this man. He was a prisoner at one point being kept hidden under the floor of my dads closet. Then he was a member of a secret government organization being hidden for an unknown reason. But whoever this man was, my dad honestly saw him each day.
To tell this story to a stranger, one would think we were nuts. But living with someone with dementia is a completely different way of life. At first, I knew it was hard for my mom. Hard to believe that he believed there was someone other than himself there, feeding him each day so he wouldn't starve. At first my mom was hesitant and refused to give this person food. But as time wore on, she caught on that the simple act of putting some food out for the guest after dinner not only satisfied my dad, but helped him stay calmer.

 
I can't tell this story without sharing a hilarious event that happened not long after the stranger moved in. (Sorry mom, if you are reading this!) The day that we learned that the man was following my dad to stores was back in February. I had taken my parents to a store and took dad to the bathroom. When he came out, he informed me that the man was there too. He seemed very disturbed by this and it took a long few minutes to calm his nerves. We eventually finished our shopping and returned back to mom and dad's house. At this point, my mom wasn't fully on board with acknowledging the new roommate. Her usual response to my dad was to tell him there was no one else there. I can't blame her, I didn't live 24/7 with someone who was feeding a stranger, a prisoner at that who was living under my floor boards.
Dad went to the bathroom once we were back home and he came out with this look of fear on his face. He explained that the man had followed him back to the house and he really wanted him to leave for good. So I got this brilliant idea. It was like a lightbulb went off in my head. I told dad that we should have mom go in there and tell him to leave. Dad thought it was a great idea too. So in walks mom asking what was going on. I winked at her and informed her "the man" followed us back and dad wanted him to leave. I told her who better than to tell this man off was her. She took me up on the challenge and turned on her heels and marched right back to that bathroom. My dad and I sat there in silence as we listened to mom tell the man to leave her house. That this was her house and he didn't belong there. She used some other choice words while yelling at the imaginary man, but I won't put them in writing. HA! My dad just looked at me and smiled. My mom returned to the living room with an instant look of relief and I asked, "Feel better?" and she did (silver lining). I want my mom to know that I grew a whole new respect for her in that very moment. That was a pure act of love.

Although the man has again left the house; he still follows my dad around town. He shows up in any mirror or window my dad sees. And that man he sees in the mirror may be a stranger to him, but to me...he is so much more...and he's still my superhero!

 

My dad has always worn this bracelet.  It is made from a Huey helicopter tail rotor chain.  I knew that he had got it off of a helicopter while serving in Vietnam, wore it religiously, and then had it properly made into a bracelet once he came back to the United States.  But I never really knew how he came upon it, so today at lunch I asked dad to tell me the story.  

Dad tells me that he and his platoon were walking and came upon a Huey helicopter, nose down in the jungle.  He said there were no signs of soldiers and he said they were most likely taken prisoner.  He said that his lieutenant climbed onto the tail and cut off  the rotor chain.  He said he then cut it into several smaller pieces and handed them to each of his soldiers.  From that moment, that small piece of chain never left my dads side.  

Of course, I had to dig deeper into this because why a rotor chain?  Well, come to find out, there is history behind it.  During Vietnam, soldiers who survived or came upon a helicopter crash or a "shoot down" would salvage a piece of the chain and form it into a bracelet.  The bracelet was a symbol of survival and brotherhood.  

For the rest of our lunch hour, dad told me stories of his time in Vietnam.  Some I had heard, others I had not.  He told me that every night he would pray the "Our Father" prayer.  He never missed a night.  I think to the last sentence of this prayer, "But deliver us from evil," and know that my dad was asking for protection.  Just as I ask God to protect my dad now.  

As we are walking out of Arby's, my dad tells me thank you for listening to his stories.  I look at him and tell him it was my pleasure to listen.  He will never know what these lunch dates do for my soul.  (Silver lining).

Messy tables

 

When my boys were little, (toddler stage) we had these plastic mats that would stick onto the table when we went out to eat.  At home, we had a mat that sat under their high chairs to collect all of the food that was dropped or thrown.  I remember being extra sensitive when going out to a restaurant hoping that my children would not make a mess.  Having the mats didn't matter other than it made me feel less embarrassed.  I miss those days.  I feel foolish ever caring so much about the messes.  Did it really matter that food dribbled down their chins and onto the floor?  Did it really matter that their food didn't stay on their plate?  No it didn't.  What mattered was that I was with my boys.

Loving someone with dementia is no different.  Today at lunch, I looked over to my dad's side of the table.  There was his plate with bacon, 1 egg over easy (he had already eaten the other one), a few hashbrowns, and sausage.  Some of the half-eaten hash browns had spilled onto the table and one of the sausages had managed to jump off his plate.  There was an open bottle of Tabasco sauce, a bottle of ketchup, syrup, an empty container of butter, a coffee cup, spilled coffee around the coffee cup, a glass of water, a straw wrapper, 2 wadded up napkins, his plate of pancakes, his cell phone, and 1 of his 2 handkerchiefs.  I was simply amazed at how messy our table had become.  But then I looked at my dad and he smiled (silver lining).  I couldn't help but smile back.

Being messy has become a norm for him.  Especially when he is eating.  Routines are disrupted by memory difficulties.  So what that tells me, is that when he took the cap off the Tabasco sauce, it is ok that he didn't put it back on.  When he wadded up his first napkin and grabbed a new one, that was ok.  And when that darn sausage jumped off his plate, he left it on the table until he was ready to eat it...and that is ok too.  I hope that when people see my dad out at restaurants with dropped food on the table and floor, and egg yolk all over his shirt that they are able to pass no judgement, no laughing, and no rolling of their eyes.  I hope they just smile.

Oh, I almost forgot...lemon meringue pancakes.  Dad remembered.

Do you know how batteries are charged?

 I just love standing outside of Perkins waiting for my parents to pull up.  As soon as my dad spots me, he gets this huge grin.  I have come to love this grin more than ever.  My dad has a great smile, one that lights up his entire face (silver lining).

Lunch was the same as last week except for a slight change.  Dad ordered his country fried steak, hash browns, 2 eggs over easy, and a side of pancakes.  I seriously didn’t think I could do another piece of lemon meringue pie. Perkins has the best lemon pie by far, but the thought of eating it 3 weeks in a row didn’t sit well with me.  So, I asked dad if he would like to share a pecan sticky bun.  He said of course, so that was our slight exception for the day.

Dad was quite today, mostly because he didn’t have his hearing aids in.  He explained to me that the batteries died again.  He said he was waiting for his next VA appointment to request a new pair.  Which I am thankful for because he has now stuck the batteries down into his ear canal twice.  Mom has had to take him to the doctor office to have them removed.  There is no rhyme or reason as to why he puts the batteries in his ears.  We think it happens early in the morning before my mom even wakes for the day.  It might be reverting to childhood.  I remember my brother sticking match box wheels up his nose as a kid and even one of my children went through a phase where he stuffed beads in his ears…one time he managed to do it two times in one day!  Is it childhood or just boys???

Dad explained to me that the batteries are hard to get out.  He used his hands to show me how my mom takes a pair of scissors to pry open the battery case.  He said that once she gets them out, he taps the batteries and that is how he recharges them.  I asked him what he meant by tapping them and he banged his hand on the table to show me that he must hit them hard on a solid surface to make them work.  I smiled and thought, hey if that it how he thinks batteries are charged, then so be it.  I told him I would try that method next time a battery died at my house. 

Lunch continued with small talk.  He asked about the boys, asked what my husband was doing today, asked me if I was working today, asked if the boys were home, asked again what my husband was doing today, asked me if the boys were at school, mentioned that he doesn’t like “the man” who “lives” in his home following him everywhere, he mentioned that his wallet was stolen, informed me he wants a safe to keep his stamp collection in, and that he tries to tell my mom how much he loves her and that she is stubborn.  I just smiled and took it all in.  Everyone once in a while I nodded or confirmed that I heard what he said, but mostly just sat there in that booth looking at my dad and feeling blessed to be his daughter.  (Silver lining).

Fabulous gifts and fibs

 

Today dad and I enjoyed another wonderful lunch out at Perkins.  Mom mentioned as he was getting out of the car that he had a gift for me.  Dad handed me a little zip lock baggie that contained 2 cookies.  Told me these go great with coffee.  That’s my dad, always thinking of others.  My sister-in-law bought him these stroopwafel cookies at Christmas time and he has gone on and on about how yummy they are dipped into his coffee.  I felt pretty gosh darn special that he thought of me and shared.  (Silver lining).

However, this isn’t the only time my dad has made me feel special by giving me one of his fabulous gifts.  Years ago when I was a young teen, my dad went away on a business trip.  When he returned, he handed me a book of poems titled For a special teenager. Towards the end of the book, there is a poem titled "I'm on Your Side and I Always Will Be."  Dad underlined part of the poem "...I know that things don't always go as planned, and plans don't always work out as soon as they should..."  I can not recall specifics of that time, but I imagine being 16 years old and having had my heart broke or having been picked over for something in school.  I imagine my dad standing in an airport and picking this book up off the shelf in the gift shop and thinking about me and what ever it was I was going through in that moment and wanting to take it all away if he could.  I still have that book of poems on my bookshelf and get it out from time to time and read.  Another classic gift was the feathered egg.  It is the most gawdy looking thing I have ever seen in my life.  Think of a Chinese lantern covered in feathers.  That is what it reminds me of.  But more so, it reminds me that my dad saw it and thought of me.  Every time I sit at my dining room table, I glance over to the curio cabinet where it hangs proudly and smile.  My most recent fabulous gift from my dad was a green tote bag and gray dress coat.  Right before Christmas, he and mom were shopping at Kohl’s.  Mom said he came up to her with this coat and said, “Vanessa will look nice in this” and that I also needed a bag to go with it.  So, with that, he walked over to the purses and picked out a green tote bag. My dad knows me well!

We finished up our meal that ended with a pancake and a piece of lemon meringue pie, just like our last lunch together.  Dad reached into his wallet and gave me $40.  He said mom told him he had to buy this time.  I told dad I would go pay the bill for him while he used the restroom.  I asked the cashier for change for one of the twenties.   I went back to the table and handed dad his change ($20 bill and two $10’s).  He didn’t question the amount handed back and put it back in his wallet.  Now he couldn’t say he didn’t pay, my mom could feel good that he listened, and I can pay for my dad’s lunch.  Looks like a silver lining to me.

The snake necklace

 

My dad and I have a tradition where I take him shopping every December to buy my mom Christmas gifts.  I pick him up, we go to JC Penny’s and then to dinner.  I have always cherished this tradition.  For many reasons, but mostly because I love to see him pick out gifts for my mom.  He is so cute and sweet with everything he picks.  There is always a reason behind each gift too.  For example, the bright yellow (and I mean BRIGHT yellow) pant suit one year.  I saw it a mile away and so did dad.  When he saw it, his eyes lit up like the 4^th of July.  He said, “your mom will look pretty in that with her tan.” 

Well, now that dad is no longer driving, he has asked me to take him at other times as well.  So, with today being Valentine’s Day, he asked me if I would take him to look for something special for mom and then have dinner.  I absolutely said yes!   

When I got to my parent’s house, my mom was in the front room.  She seemed a little flustered and mentioned that it had been a rough day.  Started early at 2 a.m. when he woke her up to start getting ready for our outing.  She had said that the last few days, she noticed that my dad has gone into the bathroom to take a shower, but not really taking one.  She said she let it slide for a day or two, but he started to look a little disheveled.  I asked where dad was, and she said he was back in the bedroom getting ready.  She had told him he needed to shower because I was coming over and taking him out which he did without hesitation.  Out walks dad in his jeans, a nice cotton pale green shirt tucked in perfectly and his belt crooked.  His hair was combed just right, and he smelled delightful.  The scent of Stetson aftershave whiffed through the air.  So much in fact that my mom started to cough.  But for me, it was a sign of sweetness, that my dad wanted to smell nice for our outing.

As dad is attempting to put on his coat, my mom is standing there asking him if he had his wallet, his money, his credit card, and his handkerchiefs.  Reminded him he needed to pay for dinner, said his coat was on crooked, and told him not to spend a lot of money on gifts.  Dad was clearly getting flustered and stopped in the moment and told mom if she kept acting like that, he wasn’t going to get her nothing.  He then asked mom if she was going with us and when she said no, he said “good.”  I guess you would have to know my parents and how they communicate.  This has been the way it has been all my life.  There is no malice behind it and they get over it quickly.

We arrive at the store, and we go straight to the jewelry counter.   I gave dad some space and allowed him to look on his own for that special gift.  I looked back at him every once in awhile as he was looking at the displays, wondering what he was thinking.  I knew he was trying to find just the right gift for mom.  Finally, dad stood at one of the displays and motioned over for me.  I walked over to him and asked him if he found something.  He pointed to a necklace and said he didn’t like it because it was gold.  I reminded him that mom wore gold, and it might be the metal he should choose.  Then at the very corner of the display cabinet was a hummingbird necklace.  He asked me if it was long enough knowing that mom does not like tight, shorter necklaces.  I explained that it was 18 inches, but we could always get a necklace extender to make it longer.  He liked that idea and stated that mom liked hummingbirds and it would look pretty next to the cardinal necklace he got her last year.  I agreed with him.  The gentleman at the counter helped take the necklace out and show it to my dad.  Dad said he would take it.  He didn’t ask the price, he never does.  Which is another sweet gesture he has always done.  It doesn’t matter the cost of the item, if he thinks my mom will like it, it is hers.  Next to the hummingbird necklace was another necklace with a butterfly on it.  Dad motioned for the man to take out that one too as he wanted to purchase that as well because mom has a birthday in February, and she needed a gift for that special day too. 

As the JC Penny employee is wrapping up the necklaces, my dad notices a third necklace.  This one had a long, dangling snake encrusted with diamonds.  Dad pointed to it and looked at me.  I gave him a look as if I was asking him “are you serious?”  Dad smiled and said, “well with her attitude tonight she deserves that hanging around her neck so it scares the hell out of her.”  (Silver lining). 

My dad's hero.

 The other night, my mom woke up to find my dad on the floor next to the bed.  She wasn’t sure how long he had been there, but he kept telling her that he was in the water and needed help.  My brother lives right across the way, so mom called him to help get my dad up. 

 Dad explained to me that he was with some guy’s fishing and their boat capsized.  He said he couldn’t get up and didn’t want to swim further out because he saw some snakes.  He went on to say he saw my mom on the shore and yelled for her to get in a boat and come out to rescue him and the other guys.  He said she tried but couldn’t figure out how to start the boat.  Dad said suddenly, his “Hero Heath” appeared in full gear to rescue him.  My brother was a volunteer fireman for the town years ago, so I can only assume that dad was referring to this.  He said Heath got behind him and lifted him up with ease.  As he says this, he bunches up his shoulders like the Incredible Hulk to insinuate Heath was this massive, strong, creature that came out of nowhere to save him. 

Dad said Heath saved his life that night and was his “hero”.  I can only imagine what he was thinking in the moment, but I am sure it was panic and distress perhaps.  I don’t know if he was dreaming or if he really thought he had fallen into the water, but I can say without a doubt, that his felt safe as soon as he saw my brother there, in full gear to rescue him from the water, snakes and moment of despair.  (Silver lining).  

The 6 am chat.

 5:55 am my phone rings.  It was my dad. “What are you doing?”  He asked as if it was 4 in the afternoon.  “Just getting ready for work dad.”  He said he just wanted to let me know that President Trump had called him the night before to offer him “the job…” and he just wanted to share it with me because no one seemed happy for him.

He said that he had also received a letter, but my mom tore it up and threw it in the trash (which btw, did not happen).  He said he doesn’t know any of the details yet like the salary, but he just wanted to let me know that it was offered. He said that President Trump thinks he can talk to people and that is why he wants him to work for him.   Through my half-closed eyes and a foggy brain, I told my dad “Congratulations.” 

I heard my dad’s voice go from sad and defeated too optimistic and happy.  He said thanks.  I told him I loved him; he said it back and we hung up.  I laid there is a daze for about 30 minutes.  So many things going through my head all at once.  It is amazing how you can feel so many different emotions at the same time.  Annoyed-I was in a pretty good deep sleep when the phone rang; sad-hearing my dad tell me something that he honestly believes to be true that I know is not; joyful-hearing his voice; angry-that this disease is taking my dad from me; worried-that my mom will get upset with him for calling me so early and their entire day being thrown off; amused-thinking it is pretty cute that he is so excited to work for President Trump; thankful-that my dad thought to call me; tearful-hearing my dad's voice sound so sad; and irritated-cause the alarm just sounded. 

As I got up and started preparing myself for the day, I kept asking myself over and over why working for President Trump is something that keeps going through his mind.  And then it hit me.  When President Trump was in office the first time, I remember my dad saying that he is a good president but is not good at talking to people.  Meaning what I took to believe was how the president talked to and about others.  Several times over the last few weeks, dad has mentioned that he is “good at” talking to people.  And that is more than true.  I don’t think I have every heard him talk down to a stranger or say something derogatory towards someone.  I do believe my dad can teach President Trump a few things about tact, I have no doubt in my mind. My dad has a way with words and making people feel special.  (Silver lining.)

Meringue pie and pancakes

 

Mom pulled up right at 12:00 on the dot.  I asked dad if he was ready for some good food.  We waved goodbye to mom as she drove off for her hour of whatever she wanted to do.  I remember looking back at her and she had this huge grin on her face.  Dad and I walked into Perkins, “table for 2 please.”

Dad asked me what I was going to have.  I told him a cup of soup and a ½ sandwich sounded good.  I asked him what he was thinking.  He said “this” and pointed to the country fried steak, eggs, hash browns, and pancakes picture.  I agreed that it sounded pretty good.  I told him I was thinking also about a slice of Lemon Meringue pie, but only if he would share it with me.  He said he wouldn’t turn it down.

We talked about the weather, a beautiful sunny 45-degree day in Indiana.  Unseasonably warm.  We talked about my sons, Myles and Will.  Myles had a basketball game that night and dad asked if I meant Will.  I said no, it was Myles who plays basketball.  I told dad about Will and his new club he joined at school, The Rubik’s Cube club.  Dad stated that Dennis (my husband) should teach the club.  He remembered that my husband could solve a Rubik’s cube in a few minutes flat. 

Our coffee and tea came.  Dad reached for the creamer.  I had never known of him to use creamer in his coffee.  When I asked, he said he thought he would try something different today.  Dad went on to tell me that as he was getting ready this morning, his old friend from his childhood named Phil walked out of the bathroom as said hi to him.  Let me back up…

A few weeks ago, my dad started seeing people in his home.  My mom had called me one night saying she found food in the back bathroom.  When she confronted my dad about it, he said it was for Butch (his brother) who is living in the floorboard.  I visited the next evening and dad took me into the bathroom and asked me if I saw my uncle?  I looked into the mirror on the closet door and told my dad no but agreed that it looked very similar to my Uncle Butch.  They do have a strong resemblance.  Dad said that Uncle Butch was living under the floor.  I asked dad how he got there and if Aunt Ruby (my uncles wife) knew he was there?  He said he comes in from an outside door and wasn’t sure if my aunt was aware.  I told him that I am sure she misses him, and he should go back home.  He agreed, we walked out of the bathroom, and that was the end of the conversation.  Later, that night, I spent a long time looking up Dementia and hallucinations/delusions and seeing things that are not there.  I was amazed at the information I found.  Never even knew it was a thing.  I also learned about sun downing, which is when the sun starts to go down, it is more common for those with Dementia to see things that aren’t there.  I realized; dad was seeing his brother in the mirror looking back at him.  Dad was truly seeing my uncle.

Lunch arrived.  I was sure that dad would not finish all the food that was brought to the table.  He had 2 plates just for himself!   As he started to cut up his country fried steak, he blurted out that President Trump had decided to hire someone else.  I asked him to explain.  He said that he had received an offer by email to run President Trump’s cabinet.  He stated that he had replied to the email several times but never heard back.  He said that his first question to the President was what the salary would be and the second being whether he would have to move for the job or not.  He said if he had to move, he wouldn’t take it because he would have to leave us, his family (silver lining). 

In between bites, he told me the guy he hired was from Mt. Carmel.  (Note, I had mentioned when talking about Myles that his game was in Carmel tonight).  He said this guy must have been a better fit, but he knows he would have been a good hire too.  I asked him why, and he said because he knows how to work with people.  I agreed with him.

The waitress brought out the slice of pie. I looked over at dad as he slurped up the last of his eggs over easy.  I smiled as egg yolk dripped from his chin.  He had eaten every bite of the steak, eggs, and hashbrowns.  He took a pancake from the other plate and placed it on the empty one, right on top of the remains of egg yolk and ketchup.  He buttered it, poured syrup on it, and motioned for me to cut him half of the pie.  He said go ahead and put it right on top.  I asked him if he wanted it right on top of the pancake and he said, yep.  Lemon Meringue pancakes!  I watched as dad ate the concoction and chuckled to myself.  My silver lining.

Silver Linings

 Tony is his name.  He is my dad, my hero, and my friend.  He is also a Vietnam Veteran, a husband, father-in-law, an uncle, and a grandpa.  He is a kind neighbor to all and one that would do anything for anyone no matter their sex, their race, their identity, or their beliefs.  He will talk to strangers on the street like he has known them for years.   He is kind, funny, and smart.  He is a hard worker.  He is a gardener, lover of having a pretty lawn, and a porch sitting enthusiast.  He loves to watch birds, and he loves to drink coffee.  His coins and stamps are his most prized possessions. 

Tony also has dementia.  It is slowly (but somehow oddly fast) taking my dad, hero, and friend away from me.    And to put it mildly, I HATE it.   I hate it for him, my mom, my brother and his family, my husband, and my children.  I hate it for our extended family and friends.  I hate it for all the people who meet him but never got to meet him before the diagnoses.  Have I mentioned that I HATE Dementia? 

 

I have wondered many times, why my dad?  What are the “silver linings” of this situation?  Why does a person who still has so much love and wisdom to give, develop a disease that will rob him of doing just that?  For over a year, I have asked this repeatedly.  I have wrestled with sadness, anger (still do if you count the number of times, I used the word HATE in the above paragraph), and frustration.  I have been in therapy, I have talked to others in the same situation, I have read books, and I have PRAYED.  I think I have God on speed dial these days. 

And then recently, something just clicked with me.  I realized I wasn’t going to let Dementia define who my dad is.  Nope.  I was not going to let Dementia win this game.  I was going to enjoy the moments with my dad, and I didn’t care how bad things got.  I was going to make a point to spend a special moment in the week, just him and I.  I was also going to give my mother a much-needed break. 

I can’t tell you my story without telling you about mom.  Her name is Amy.  She is my mom, my hero, and my friend.  She is a wife, mother-in-law, an aunt, and a grandma.  She herself, would do anything for anyone, she may give her solid opinion first, but she’d still do the right thing.  She is a great cook.  She is a hard worker, she is a giver, and she loves to shop (I get it honestly).  She loves to read, loves the Hallmark Channel, and beer. 

My parents have been married 50+ years.  I have never known anything different.  They both raised me and my brother in small towns (Constantine Michigan, Connell Washington, and Lapel Indiana) and taught us hard work and how to be the best version of ourselves.  Friday nights growing up, was my dad turning on the “oldies but goodies” station and the four of us dancing the night away.  As I grew up, I never left the house without hearing the phrase, “Remember who you are.”  My parents were loving and supportive but also made sure my brother and I showed respect to those around us and to always choose the right thing even if it was easier to choose the wrong.

We have always been very close.  As we grew into adults and had families of our own, we continued to be close and just incorporated our lives as one.  For example, every Christmas, we all gather at my parents’ house (in our pajamas) on Christmas morning at 5 a.m. to open Christmas presents.  My children, now 13 and 10 have never known anything but this tradition.   It would not feel “right” doing it any other way.  Imagine me telling my husband on our first Christmas as a newly married couple that we were going to my parent’s house on Christmas Eve to spend the night?  With all laughter aside, he took it like a champ and loves the tradition to this day. 

So fast forward 18 years, present day.  We noticed small things changing in dad.  Slower mobility, longer to gather thoughts, and small bouts of confusion.  We chalked it up to him being in his 70’s.  But then mom had some concerns that seemed to be leading more towards something a little more serious.  My mom was scared to bring up the subject with dad.  We hee hawed around the subject for months thinking it was our imaginations.  But then dad started getting lost when driving and lost when in a grocery store.  One particular incident was that he and my mom were at Costco and they had parked next to a cart return.  After they were done shopping, my dad told mom to get in the car and he would put the cart back.  30 minutes later he returned.  He had somehow got turned around and lost in the parking lot. 

I remember the conversation with my dad like it was yesterday.  He and I just sitting in his front room.  I told him I was worried about him and asked him if he had noticed any changes lately.  He brought up the incident at Costco.  I asked him why he thought that happened and he said he didn’t know.  I asked him if he thought he might be getting confused lately because grandma (his mother) had Dementia, and he just sat there.  In that moment, I knew he knew.  I cried and I told him that we don’t know anything for sure, but I felt it would be better to know now in an early stage than wait several years to know like it was with grandma.  I told him there was a lot of medications out there that could prolong symptoms IF he had Dementia.  I told him I was selfish; I wanted him to be around for me. I told him I would go see a doctor with him.  He agreed to go…for me. 

So here we are, a few years later into his actual diagnoses.  Life has drastically changed for all of us.  Some days are great, others are horrible.  I have decided that I will define the time I have left with dad, not Dementia.  My friend recently encouraged me to think about blogging, something to keep track of my special moments with my dad.  I thought about it, and that is how I came up with Tuesdays with Tony.  It is my blog, my place to share with others that there are silver linings, you just must look.