Roadtripping Thru Grief

While I was taking care of my dad, Jeff and I prepared for “what ifs”.  We talked about all the things that could go wrong.  I talked to dad all the time about why I was making the household and financial decisions.  We talked all the time about how hard it was to go from complete independence to needing someone watching over everything you do. We talked about my only goals were to keep him as safe and healthy as possible for as long as possible.  We always talked with him about major decisions and I never wanted to talk down to him or make him feel like he was incompetent.  We talked about how it was ok to be sad, angry, annoyed and how much it just plain sucked to lose your autonomy.

We put cameras in the house to insure no abuse or neglect from caregivers…dad hated them. We put trackers on his phone, on the cars and even his hearing aids (he didnt know about this one)….dad hated them. We were determined to have the best care for him when one of us couldn’t be there. We were determined to not lose him in the woods or in another state if he decided to walk away from the house or take off in the car.  Dementia is a crazy disease…it plays tricks on the brain.  While present, in the moment, dad knew he couldnt drive or just leave the house.  But sometimes he traveled back and believed it was a different time when he was independent and could drive and go wherever he wanted, when he was strong and could walk for miles.

As time went on dad knew he needed me there.  He would get worried and would kind of look around for me.  If I was going to be out of sight, working in the yard or hanging with my cats, I would tell him where I would be.  I would check in every 30 minutes or so to make sure he was still watching TV or snoozing in his chair. It got to the point that I would even leave the bedroom door cracked open if I was napping or taking a shower.  He wouldn’t “bother” me if he thought I was sleeping. Needless to say, I didn’t sleep much the last 2 years with him, at least not very soundly. I was always listening for him. Eventually I stopped working in the yard or even spending time with my cats in the garage because more than once I noticed him pacing around the house looking for me.  He would forget after a few minutes that I told him where I would be.

He never did walk away from the house or try to drive after we officially took the keys away BUT……..

There was a day, later in the game where it was just dad and I at the house.  I didn’t have caregivers everyday.  Dad had gotten up and got himself ready for the day (thankfully he was able to do that right until the end).  I had gotten up to get him thru medicine, insulin checks and breakfast.  After he was settled I went to take a shower.  I left the bedroom door cracked so he could call for me if he needed something.

When I got out of the shower I heard someone in the hallway talking.  The hallway was about 12 feet long.  It wasn’t dad’s voice, in fact it was someone talking to dad.  It wasn’t Jeff’s voice.  We had many discussions about what was happening daily, who was going to visit and everyone knew to check with me before dropping by.  Even if someone was visiting there was absolutely no reason to be in the hallway by the bedrooms.  Dad had himself taught me about home protection and previous to being a caregiver, my profession taught me self protection. Due to my previous profession I am really good in emergencies and making a plan. Dad no longer had access to protection and didn’t know where mine was.

Anywho….I took about 2.5 seconds to assess the situation, throw on a robe and decide if I was going walk out of the bedroom with or without protection.  I opened the door to my dad and some stranger at the other end of the hallway.  My dad looked guilty (I still feel bad about this) and the stranger looked like he belonged there. I didn’t ask any questions….I demanded he leave the house immediately. He looked stunned. I again said….GET OUT, NOW!  I think I said something along the lines of who the hell are you?! Dad was trying to tell me he was just checking the cable. Stranger was trying to tell me, “he let me in”.  I told them both, I don’t care, GET OUTSIDE, NOW!  It felt longer than it was, I’m sure.  It was maybe 30 seconds before he stepped out on the porch. With about 2 seconds from me going back to my room for protection. 

Let me tell you this man had no badge, no company shirt and the vehicle wasn’t parked in the driveway.  I had no service requests or appointments or warning that anyone would be coming to the house.  As he was walking to the door he said, you really want me to leave, the wifi and cable is disconnected.  This means he was in the house for more than a minute.  He had already been to the basement, the living room, the family room and was on his way to the bedroom where the computer was.  He had time to be in and out, steal anything he saw and/or case the house for another visit.  He had time to hurt dad or me.

I told him the only thing you need to do, right now, is get out of this house until I figure out who you are and why you are wandering around the house without my knowledge.  True, it was my dad’s house, my dad answered the door and let him in. My dad looked much healthier than he was, especially mentally.  My dad could talk a good game and hold it together in the moment. 

So, on the porch the phone calls started and the interrogation commenced.  His id was in the company marked vehicle on the street not in front of our property.  He was sent to “visit” all the Xfinity customers in the area and to make sure everything was up to speed. The account was in my name.  Phone calls were made to Xfinity, his supervisor and flagged on our account. After the phone calls I allowed him back in (with protection in the pocket of my robe) to hook everything back up.  With a warning about how you should and shouldn’t enter someone’s home, even if an “adult” let’s you in. I think dad knew he should’ve checked with me but he didn’t immediately see me and didn’t remember I was in the shower or he didn’t want to “bother” me.  His words, not mine.

After this day, I struggled to take a shower or literally be out of earshot of the front door and dad.  Dad had lost his discernment, he wasn’t able to ask the right questions or make sure people were who they said they were.  I know he looked guilty that day because I was loud and forceful and he realized it was a mistake to let someone in the house without me knowing.  I never wanted him to feel like that, I wanted him to be as independent as possible.  I really do still feel bad about making him feel like incompetent.  There just came a time when it wasn’t safe for him to be making decisions.  I’ve never been so close to making a life and death decision, even when I wore a uniform.  You can plan and plan, and a curveball will still come at you at 80 mph.

This has taken me a while to write about, it is not a funny dementia story.  There are funny stories, this one was scary and almost life altering for a couple people. 

F.oxtrot, U.niform, C.harlie, K.ilo Dementia!

Several months ago I saw a post from a cousin on Facebook.  She was expressing her frustration with her current financial situation and all the feelings of past choices.  I told her then, I would write about what my mom told me when I was feeling the same.  I never did.  Recently she posted again about the same feelings. So here it goes.

As far back as I can remember my parents volunteered, gave advice, gave support in any manner they could afford to.  They volunteered for national and local organizations.  They also gave privately, they opened their doors so people would have a place to live, they helped pay bills when lights were going to be turned off, they provided Christmases for people who were struggling, they paid for gas, they filled pantries. They were also discreet about it. My parents were not saints, they were not wealthy but still managed to give whenever they could. However, I feel like the biggest loss when my mom passed was her advice.  Their friends, family, my friends, generations sought advice from my mom. Her advice could be whole lectures or little snippets.  As a teenager, I started asking for just the title or # of the lecture.  Because of my all consuming grief I wasn’t really able to process other people’s grief.  Her loss was huge for a lot of people, many of which were my cousins and my cousin’s kids. 

I feel like everyone goes thru the stage my cousin is in right now.  No matter how much we try to tell younger people, generally they dont listen. There are few exceptions. Now that I’m into my 50’s it seems like the light turns on in your 40’s.  At least that seems to be when the struggle let’s up.  Sometime after I bought my 1st house in Texas, in my early 40’s, I had a conversation with my mom about finances.  I was working 16 hour days, I still had student loan payments and a decent amount of credit card debt, no emergency fund, I had a nice home, a nice car and I was living paycheck to paycheck.  Everytime I thought I would have some wiggle room, there would be an emergency.  I was constantly stressed, I was kicking myself for all the money I blew in my 20’s and 30’s. Stuff I didn’t even have anymore to show for the debt.  My constant was stress, guilt and exhaustion.  If I could just get a raise, promote, do this or that….all my money problems would be solved. 

One particular conversation with my mom, I remember clearly.  I was likely in tears and stressed to the max.  To sum it up, her advice….when you know better, you do better. In your 20’s you think you “need” the car, the clothes, the purse, the food, the whatever. She said, when your dad and I were young, we were broke.  Until we were in our 40’s and started investing and retired the first time we really didn’t have it together.  You can’t be in your 20’s and expect to start out where your parents are in their 40’s or 50’s. Move forward with better decisions, you can’t change the past.  She told me more than once, you can either make yourself sick over it or you can fix it.

Jeff and I have talked about this.  We were blessed, we were “lucky”.  We always had what we needed, maybe not name brands or everything we wanted. For many years our clothes were hand made…even our underwear because it was cheaper. Sometimes it felt embarrassing especially as we got older and started in public school. They made decisions they probably couldn’t afford when we started public school because kids can be mean. When I started going to formal dances I loved that my dresses were, one of a kind,  designed and hand made by my mom. As you grow and mature your values and ideas change. We had more than a lot of people. Neither one of us take that for granted….ever.  We also had less than a lot of people. How you feel about that is directly influenced by the people you are around.  So while friends, family, school mates affect your views on how you earn and spend and save money, most likely you have to mature and look back on your own experience to make the changes for yourself. Jeff and I don’t take for granted our situations now.  We both know exactly how fortunate we are that my parents took care of themselves so we were able to take care of them. We both know there isn’t always a net to catch you at the bottom of the cliff.

My parents made some really good decisions in their 40’s.  Due to them investing in their future, I was able to do what I did.  Yes, I gave up a lot.  It was scary. The outcome was unknown. It was blind faith when I didn’t understand true faith.  I was still trying to control everything (that doesn’t usually work btw). If my mom hadn’t passed when she did, if I hadn’t dropped everything…every single thing to take care of my dad, if my house hadn’t sold in one week, if my parents hadn’t adjusted their way of life in their 40’s, if I hadn’t jumped off the cliff…I wouldn’t be living my dream.  Don’t get it twisted I would give it all back to spend more time with my mom.

I’m living my dream and trying to honor everything I was given by making good decisions and living true to myself. I don’t want a big house, filled with stuff. I want peace, relaxation, experiences, beautiful sights.  If I hadn’t walked the path I did, making every decision I did from my teens to now….I wouldn’t be sitting where I am right this minute.

A coworker recently asked me, “Why aren’t you stressed about the government shutdown or the 4 hours of work a day?”  (Part time was 6 hours a day, for now it is 4). I told him, “If I’ve learned nothing else over the last 6 years, I’ve learned, it will be ok”. I won’t make decisions to put myself in a bind.  If I do get in a bind I won’t wait to ask for help.

Bottom line is:

When you know better, you do better.  You can’t change the past. Stay focused on your goals. Stress, guilt and control closes your mind to possibilities. It will work out, it will be ok. Give whenever you can, what you give you get back…money, time, advice, physical or emotional support.  Teach your kids what you wish you had known. Sometimes you need to step back to step forward. Pray, meditate, figure out what you really want, write lists, seek advice. Have FAITH. 

In 1988, the movie Cocktail came out.  I loved it, I still love it.  I was 14 years old when it was released. 

From the first time I watched it, I remember saying to myself and others, “One day I’m gonna move to the Caribbean and open a Tiki Bar.”  When one of the VHS rental stores was going out of business, my mom bought me a copy of the movie.  When I digitized the VHS home movies, I included Cocktail as well.

The Caribbean lifestyle has drawn me in since before I ever visited in person. It definitely caught my attention when I watched that movie. The palm trees, the salt water, the sound of the waves, the music, the slow pace…all of it was a dream. I’ve been very fortunate to travel. I’ve been to beaches in almost every coastal state, including those around the Great Lakes. I’ve been to beaches in Hawaii, Mexico, England, and the Florida Keys. In 2002, I traveled to the Caribbean for the first time, St. Croix. In 2014, I spent my 40th birthday in Grand Cayman.  Both islands were beautiful but didn’t quite seem doable or like “the” spot.

In 2024, I took a cruise for my 50th birthday. One of the ports of call was San Juan, Puerto Rico.  At the last minute, I booked an excursion to walk around Old San Juan.  As soon as I stepped off the ship, it felt doable and peaceful.  I can’t explain the feeling that came over me.  I knew nothing about the rest of the island. However, I almost immediately booked a trip back to check out the whole island. 

Puerto Rico has it all, in my opinion. Beaches and mountains, city and country, convenience shopping and side of the road markets, award winning restaurants and food trucks, Spanish and English (I’ve even used my sign language skills quite a bit). If it doesn’t have it all, the rest of the islands are a short ferry ride or cheap plane ride away.  I plan to explore as many islands as possible.  Maybe this island isn’t forever, but I’m loving it so far.

Within 6 weeks of being on an island for about 5 hours, in only a small area, I was looking for a place to live and what type of work I could do on the island.

Family, friends, coworkers, and strangers ask me,  “Why Puerto Rico?!”  It’s not an easy answer.  From the outside looking in, it seems kind of crazy, quick, and impossible.  Throughout life, there are windows of opportunity, and if you don’t jump out the window at the right time, it may never open again.  I found the place, I just needed to get everything else to fall in line.

“One day I’m going to move to a Caribbean island and open a Tiki Bar”.  37 years later, lots of life, careers, moves, and death in between….I’m half way there.  I’ve had other dreams, however, I remember exactly when this dream started and it has stayed with me as other dreams have come and gone.

Some people think the story started 6 years ago.  June 26th, 2019, I received the worst phone call I’ve ever had.  I think it started in 1974.  Everything that has happened since that phone call, was based on every decision I made before that phone call.

My mom was my best friend. She knew what I was thinking before I thought it.  She knew my dreams before I dreamed them.  And man, did she show up in my dreams after she left us (another story for another time). I knew my whole life when I lost my mom, it would take me out. 

I can count on less than my two hands, how many days I didn’t speak to my mom in my whole 45 years of life.  Every day, I spoke with her, even when I was in another country or another state. I called my mom as I was driving home from work on June 25th, like I always did.  Immediately, I knew something was wrong, I heard the machines in the background.  It was a short call (now regrettably short).  She told me about the procedure they would do the next day.  She really didn’t have the energy or the breath to talk much more than that. After hanging up, all I thought was….thank God they caught it.  She was in the hospital, they would fix it. She didn’t make it thru the procedure. I dont have many regrets in life.  There are some things I wish I had done differently but not really regret.  Then again, had I made a different decision, who knows where I would be right now.  I do wish I had taken an early morning flight back to Michigan to see her before surgery. But they were gonna fix her heart, she was going to be ok.  Instead, I got up and got ready for work. I got the call from my brother on my way to work.  That phone call did, in fact, take me out. 

A couple of really good friends dropped everything to help get me home, packed, and to the airport.  I dont remember even making the phone calls from the side of the interstate in Houston.  Some family booked my ticket and made plans to pick me up in Michigan and get me “home”. 

By the next day, I had decided I was moving back to Michigan.  Several people tried talking me out of it, most of all my dad. There have been lots of things said about why I left my career, my house, my friends, and my life to take care of my dad.  “It is the right thing to do.” “You are such a good daughter.” “It’s gonna be so hard.”   The truth is, losing my mom took me out.  I couldn’t function in the job I had.  I was not in a place to keep myself safe, let alone anyone else.  Maybe if I was in a different job, I would have stayed working.  But I wasn’t, I carried life and death decisions on my belt.  The truth is, I decided to move back home in the 24 hours after I got the phone call because there was nothing else I could do. 

I always thought it was an exaggeration when people say their heart is broken.  However, I have never felt such a physical pain as I did in my heart when I lost my best friend.  I said to myself many times….”stop this is literally damaging your heart”.  I’ve always had a pretty calm and realistic view of people passing.  Accidents happen, people age, people get sick, and people don’t take care of themselves.  I know I’m lucky to have had my parents as long as I did.  But geez, when it is the other half of your brain, your heart it doesn’t matter how old you are.  Losing my mom took me out.

6 years ago, my whole life, my mindset, my goals, my dreams, my relationships, my “next steps”, my worries, my cares, my priorities and my identity changed in an instant.  A lot of people ask…how did you end up in Puerto Rico?  My short answer is, it was time to make a change.  The long answer is, losing my mom took me out. Losing my mom influences me to live the most authentic, simplest, and stress free life.

My mom is missed by many people she was the go-to person for many people. She was kind, creative, giving, and smart!  But she was my everything.  In a grief group I attended, secondary losses are a topic in the program.  I could list allllll the things I lost when my mom passed and then I could list more.  I will never live more than a couple of minutes from work because I can’t call her on my way home anymore.  “They” say it gets easier with time, I disagree.  It shifts and changes, but I dont think it is easier.

So, 6 years later, I spent the day in the sun, by the ocean, in a pool.  My mom would love the life I’m living.  She would have been right next to me in the pool, getting tan and a little pink. I miss my water buddy! 

Going from a constant rolling list of things I needed to do in a day or a week….to literally only having a list of things I would “like” to do…is such a hard adjustment. 

If I dont feel like doing a single thing on my weekend….it’s ok.  If I want to sleep in or lay around alll day….it’s ok.  If I want to work on a project for myself over several days and leave it out while I can’t work on it….it’s ok.  It’s been years since I have felt like I could read a book in one sitting guilt free, something I used to really enjoy.

The amount of guilt and anxiety I had over always having to be productive or get things done or work extra hours is indescribable. I have cut back so much on bills and physical stuff. I get to work a normal schedule. I still have more to get rid of.  So weird, but I will get used to it.

Throughout the 4 years I took care of my dad, we had one conversation over and over.  He had the same worry and question, but I never had the answer.

He always felt guilty that I quit my job, sold my house, and moved back to Michigan to be with him.  However, he knew it was the best answer.  Begrudgingly, he accepted the choice I made.  The alternative was him going to assisted living. 

He asked me often….”Where are you gonna live?  Where will you work?  How are you going to take care of yourself?”  He was very worried about my brother and me.  I think he was always more worried about me because I was single, female, and not working.  He was also very proud of the work both of us had chosen to do. These conversations were difficult and emotional for both of us.

At first, I didn’t have an answer, I had just thrown my whole life in the air. I couldn’t plan anything in the future because no one has a date they will leave this world.  I always had a plan to travel a bit. I planned to grieve, heal, and clean out the house my parents lived in for 40+ years.  After that, I wasn’t quite sure what I would do. I fully understand how fortunate I am to have had the resources and time to do these things without rushing back into work.

Eventually, I started “dreaming” with him.  When you come to that stage in life, you start listing all the things you wished you would have done, the places you wished you would have gone. We would also talk about the places he had seen, the things he had done while he was able to.  I always told him I would travel for about a year and handle affairs in between road trips.  Everyone knew I would not stay in Michigan.  So I told him about the places I may move to, the Caribbean was always at the top of the list. I talked about the type of work I wanted, Federal jobs were at the top of the list because I could move around.  I dont like being stuck in one place for too long.

One particular time we were having this conversation…again.  You know, dementia.  So, I started listing all the national parks I could work at and move around as the weather changed.  Sleeping Bear Sand Dunes,  Biscayne Bay, Dry Tortugas, Yellowstone, then I said, Hawaii Volcanoes National Park.  He had been there.  Mom, Dad, Aunt Sue, Aunt Carole, Uncle Tom, and I went to Hawaii somewhere around 2002.  We took a helicopter ride over the volcano.  Of all the places we talked about, he said to me, “If you move to Hawaii without me, I will come haunt you as long as you are there”.  In response, I told him, if you come haunt me, I will throw your ashes into the mouth of the volcano instead of under the Mackinac Bridge like you have always wanted.  I still laugh about this particular conversation.

Anyways, him and mom are somewhere in the Straights of Mackinac, I am in the Caribbean, and this week, I finished my training and became fully certified in my federal job (not a national park).

Two years ago today, he let go, I know he couldn’t stand, not knowing how things would work out for Jeff and I, that we would be ok.  I pray he can rest in peace now that both of us landed on our feet.

Over these last 6 years, I have learned to let go of control and have faith.  I have learned to follow your dreams and live life.  Life isn’t all about the rat race , work, money and having all the things. Life is about relationships and experiences.