Goodbye 2018 and Exploring The Road Home

So I quit my job and I’m living out of my car. Yes, you read that correctly.  The year 2018 is up there with one of the hardest of my life. It opened up every old wound and challenged every part of me.  At one point I wasn’t sure I’d make it out alive.

In November of 2017 I gave up my comfortable life and well-paying job in San Antonio to move back to Utah to help care for my father and my brother Ian. Over the past several years, my siblings and I noticed my dad’s cognition declining.  As siblings, we discussed what supports could be put in place to help him and who would be willing to help out with my dad and Ian. My mom died 20 years ago from cancer. My dad, and us siblings still at home, assumed the responsibility of caring for my brother Ian, who was born with Spina Bifida and was paraplegic since birth. After us kids all left home to go to college, my dad was left with the sole responsibility of caring for Ian alone.  He declined help from any home health agencies, state agencies and rarely accepted respite care from family.  Between trying to hold down a full time job and being a single parent caregiver for my brother, with all the endless mountains of paperwork that comes along with it, the burden had caught up with my dad.

When I was younger I remember visiting my dad’s office and seeing all of the local and national awards he had won over the years for his writing. He had been a technical writer for his company and was good at it. My dad was an intelligent man. I always refused to play Trivial Pursuit with him because he was a wealth of knowledge and there was no way I could ever win. I remember him always bringing home word games, anecdotal stories and sharing information he read in the encyclopedia when he couldn’t sleep. I remember when he was downgraded from a big front office at work with floor to ceiling windows, to a small little office tucked back away in the building from his colleagues.  He wanted to work until he was 67 or 68, but retired at 65 because he just couldn’t do his job anymore. His mind wasn’t as sharp and his energy was lagging.  Over the years his memory slowly started to fade.  He also started to experience difficulty with staying organized, with problem solving, following simple directions as well as becoming paranoid and suspicious. He had lost a significant amount of weight over the years and he looked 10 years older than his age. My dad was just tired.

When it came to discussing care-giving needs for my dad, all I knew it that it wouldn’t be me. I refused. My dad has always been a very religious and ridged man. I had become estranged from my father several years ago after he had said and done some things that I felt were unforgivable regarding my sexuality. After that encounter I moved to Texas to create some space and I didn’t talk to him for 2 years. After some time and distance, my heart softened enough to make small talk with him, but I knew our relationship would never be anything more than small talk. I had to go through a grieving process knowing I would never have a father that wanted to be a part of my life, and actually disapproved of my life.

Then in Sept of 2017, I had planned a 10 day trip with 5 days in Utah and 5 days in the Tetons with friends. The day I arrived in Utah, a traumatic event happened with my dad that showed how poorly my dad was doing and how much his mental state had declined. The morning after the incident I was sitting on the front porch, pondering and processing the events from the night before. My dad wandered out to the front porch and sat down on the steps. We were both quiet for a while until he commented on how beautiful the morning was.

“Dad, we need to talk. You need some help. Last night was scary. I don’t know if you remember everything, but it really scared me.”

My dad sat dad on the steps of the porch and he hung he head down. “I know. My memory is shot. I don’t remember things that I know I should. My mind isn’t like it used to be. It’s really discouraging.”

Then words came out of my mouth, words that were not my own, “Dad, I’m moving home to take care of you and Ian.  It’s not a choice on your part and you don’t have a say in it.  I just needs to happen.” I knew if my dad was given a choice, he would refuse help, as always, and want to dig his heels in to prove he was still capable of caring for himself and my brother.

My dad nodded in agreement, his face wrinkled up in sorrow having to admit he needed help. He got up and went back into the house.

The aftermath of what I had just committed to hit me, hard. “What the hell did I just say??!!” I bent over and put my head in my lap, rocking back and forth and the tears just came.  “Oh dear god, No, not me! I can’t do this, I can’t do this. Don’t let it be me. Oh dear god, I can’t take care of this man.”  After some time I stopped crying and I just sat there on the porch, numb and dazed from the crying.  I wanted to reverse time and make it all go away. 

I was a mess.  The next 7 weeks were just one giant panic attack. I was terminating my life in San Antonio and trying to get things organized for my move to Utah.  And my poor dear friends who had to deal with my crying and the endless verbal processing, God bless them. They attempted to offer support, give advice about building a support system, accessing community resources and that maybe it won’t be as bad as I was making it out in my head. But I couldn’t be consoled. My mind was stuck on all my past traumas with my dad and knowing how my dad can be on a day to day basis. I had serious anxiety and fear.

The first couple of months were just extremely busy. My Dad underwent surgery to correct a swallowing problem, but the anesthesia took about a week to wear off and left my dad even more confused, and extremely weak.  I was afraid to leave him alone during the day but I had to work.  He had refused any help from church members, neighbors or home health services. When a home health nurse came by to do an evaluation on his post-surgical needs, my dad became very irritable, suspicious, refused to answer any questions and kicked her out of the house. On the way out, the nurse gave me a look of sympathy and said “I’m sorry you have to go through this.”  “Yeah, me too” and I let out a heavy sigh. 

With all the care and supervision that my dad and brother required, I was unable to work full time and accepted a part time job and then another job working weekends. Thankfully I was blessed with an amazing boss. She allowed me to set my own schedule and was very understanding of my situation as well as becoming my emotional support system. Trying to work, take care of my dad and Ian, figuring out a routine and managing their medical issues was overwhelming.  My life was no longer about me. Life felt heavy; A painful, emotional burden.  I felt so alone.  I felt I had no one to talk to.  A few people were keen to give advice, but there was no one to provide respite care. No one to give me a hug or offer comfort.

My dad was officially diagnosed with Alzheimer’s in January of 2018, at the age of 72. From March to June 2018 my dad had a steep decline.  He would often forget to eat and lost 15lbs off his already thin body. The verbal and emotional abuse, combined with increasing confusion and safety issues magnified my burden and I had multiple breakdowns. My dad would get upset if I had to point out yet another safety issue and he would take his frustration out on me.  I was always the bad guy. There was a dark weekend in March where for 2 full days I laid in bed and contemplated suicide. I felt I was sitting at the bottom of a muddy well, slowly sinking down and no way of getting out. Every nuanced cry for help, with no response, felt like a lid was slowly being closed over me. My burden felt so dark and heavy that I felt I had no other options. I just couldn’t keep doing this. Ending my life felt like a relief. No more pain. I knew exactly how I’d do it. But what about Ian? Who’d take care of him? And the burden on my other brother, Graham, with his young family, would be so heavy and he is already taking on so much. And what would Ian think? He would think it was his fault that I took my life.  That weekend finally ended, after a lot of crying and prayers. I managed to pull myself up and out of bed each morning after that, but it was usually accompanied by tears.  Thank goodness Ian was a ray of sunshine. He always gave me a hug, a big smile and joke to start each morning.   

My dad was feeling ill one day in June. I had taken his car keys away several weeks earlier (talk about drama!!) and he had to pass a driving test that morning if he wanted to get his keys back. He had so much anxiety that he felt nauseated and very weak. I convinced him to go to the hospital. I then communicated to the doctor and social worker how unsafe my dad was living at home and could no longer live on his own.  Against my dad’s wishes, he was discharged to an assisted living facility. While in the hospital, my dad was prescribed a medication that could possibly help slow his memory loss. It was also a mood stabilizer. After just one week on the pill, my dad became a different man.  He was happy, social, started sharing stories from his past. He was nice. Who was this man?  My dad has always been fiercely private and definitely not social.  To see him initiate gathering up a group of people to watch a football game, to see him sitting around a table doing a puzzle with other residents, to hear him talk about how he sits at a different table each meal time so that he can get to know everyone and make sure no one feels left out…..was an unexpected surprise because this was not the father I grew up with.  He gained back the 15lbs he had lost earlier in the year and his ability to speak more fluently actually improved the more social he became. It’s crazy to think what one little pill, combined with a positive environment, can do for someone in my dad’s condition.  I am grateful he’s had a good transition into this next stage of life.

At about the same time my dad transitioned into assisted living, my brother Ian became very ill with pneumonia. He was hospitalized for 5 days and then sent to a care facility to continue with his recovery.  With both my dad and brother in facilities, I finally had a little room to breathe. I still was very busy helping with their transitions and making sure they didn’t feel forgotten about, but the majority of the caregiving load had been transferred off my shoulders. I was able to pick up more hours at work so that I wasn’t living paycheck-to-paycheck anymore. I also started to clean out my dad’s house. He had started to become a hoarder and I think he kept every piece of paper he ever received.  I ended up shredding 385lb of files, taking 8 truckloads of junk to the landfill, 8 truckloads of stuff donated to DI, 2 truckloads of furniture and appliances donated to Habitat for Humanity, over 1,500lbs of food donated to the local food pantry (he got a little over-zealous with his food storage), overall totaling around 100 hours working to get it all done. Whew!

My amazing brother Graham and his wife agreed to care for Ian full time and actually built a wheelchair accessible house to accommodate Ian. Ian is now living with them and adjusting to a new environment. Graham and his wife have made incredible sacrifices and are also slowly adjusting to being caregivers. My heart goes out to them, understanding all that being a caregiver means. It is a heavy burden and I hope I can be the support to them that they need.

The Universe has a way of making us face our fears. My experience felt like a bird flying head-on into a glass window and then wondering where the window came from. Our fears are always there and sometimes we choose not to see them.  We get so habituated with avoiding them, stuffing them back down so that we don’t have to confront them or blaming someone else for why those fears even exist in the first place…. that those fears continue own us, to define us and how we behave. This year forced me to confront every painful memory and experience from my past with just about every family member, including my father and even my mother. I can choose to feel victimized, resentful, angry and sad. But that is such a heavy burden to carry. I know darkness and I’m tired of it. I’m emotionally exhausted. It’s such a sad, lonely, and isolating place to be. I’m choosing the hard work of facing those fears, one deep breathe at a time.

As 2018 has wrapped up, I’ve had a few spiritual experiences that have started the process of healing. My heart has softened. I have a lot to think about. A lot I want to change. Although Utah is where I grew up, it just doesn’t feel like home or a place I belong anymore. Quitting my job and converting my SUV into a living space is a means to an end. I want to explore different places and find where I belong. I want to find a home. I want to reconcile my past, find some healing and create a beautiful future. I want to connect more with people. I want to feel confident again. I want to feel ambitious again. I want my humor back.  I want ME back.   Here’s to a new journey and new beginnings!!