“If you are headed in the wrong direction, God allows u-turns”. ~ Author unknown
My house in a Phoenix suburb is a modest four-bedroom/two-bath home with a living room and family room. In late December 2009, I moved my mother in with my three kids, plus a friend of my daughters’ who needed help, two dogs, two cats, and me. My mom needed routine care and we wanted to prepare for her upcoming cancer treatments. In the spring of 2010, I converted the family room into a suite/hospital room for my parents. Somehow, we dealt with a new shower schedule that included bathing my dad, a myriad of doctors’ appointments, and laundry pileups around the house, a car schedule, a bedside potty, and six rows of pill bottles on the dining room table. My artwork was replaced with a white board on the wall containing our daily schedule and basic information for my dad to remember such as his name, the date, and his hourly schedule. This chapter delves into blending my parents into an already full household of football, school, Job’s Daughters (a girls’ fraternal youth organization) involvement, my impending divorce, and my career.
The anticipation of having to provide intense 24/7 supervision for my dad and provide full time care for my mom was very overwhelming. When I say intense 24/7 care for my dad, I mean intense. I fed him, helped him to the bathroom, wiped his butt, cleaned up accidents, made and changed his bed, kept all fourteen medications straight, kept on top of his blood sugar and insulin needs, and helped him around the house at all times. He could not be alone and needed help dressing, bathing, eating, etc…. He was still unable to form new memories and remained very confused about everything. Every single day, I was answering the same questions again and again. I found it a little shocking that I could finish his sentences when he couldn’t. He would say a few words—not even in order—and I would understand what he was saying or asking. I remember asking him to nod or put up a finger with his good arm if I was on target. Ninety-nine percent of the time, I was right on. I knew my dad so well!
There were times over the next several weeks that I felt overwhelmed with intense fear. Then exhaustion set in. I remember feeling so overwhelmed and sad; I was literally paralyzed in virtually every other area of my life. Breathing, living and sleeping around my parents’ care was literally all I could do. To think about the simplest of tasks or other responsibilities was just too much to bear during this time. There were times I thought I was close to a breakdown. I simply couldn’t shake the emotions and if it didn’t involve my family—I had no room for it in my energy field. On top of this stress, I was going through a divorce from my second husband.
Just as we were settling in from his February hospital discharge, he deteriorated. Mid March through May 22 , 2010, my dad was hospitalized again for various complications resulting from the accident and subsequent brain trauma. There were times we thought we would lose him and each time, he came through. The drawback was each time he overcame these obstacles, he had a new and declining baseline level of functionality. This proved difficult for everyone to handle, especially my dad. As he was able to start forming and retaining new memories, he became increasingly agitated, sad, and determined all at the same time.
Suddenly, the reality of moving my parents into our home set in. While one or both of my parents were in various hospitals and in between hospital stays, I realized I needed to focus my attention on practical matters like selling their Dallas, TX, rental home. I needed to empty out their two storage rooms in Casa Grande (where they lived prior to the accident), either rent or sell another property my dad bought months before his accident, and figure out our options with their primary residence. The other property was filled with what I call ‘stuff’. Then there was the matter of what to do with their household goods still in a very large storage room in New Hampshire from a decade prior.
Without a steady income, my parents couldn’t afford their home. You might be thinking, My goodness they sure had a lot of ‘stuff’ to fill three (3) storage rooms, one (1) home along with their primary residence—and you’d be right! My dad kept everything…just in case he or someone else needed it. The challenge was my dad forgot what he kept and where. After everything was said and done, I can only imagine the lack of control they felt as we worked to clear everything out.
So many emotions came over me throughout this process. I was angry that I worked so hard to have a relatively clutter-free home as an adult and here I was knee-deep in their stuff. How is this fair? I resented my dad many times over for living this way. Then, I became sad that my parents felt so out of control in their lives that they felt they needed to keep things to the extent they had. I wondered how and what happened in my dad’s life that made him live his life the way he did. I felt a real struggle between feeling better we were getting this ‘task’ off of the list and seeing their visible sadness about their world being pushed aside and turned upside down.
I definitely felt a sense of urgency to donate, toss, bring home, sell or rent all the homes and storage units belongings. First, I wanted to get as much cleared out before my dad got out of the hospital or passed away (It was still touch and go for many months.), as my time would need to be redirected at that point. Second, after researching Arizona State elder assistance care requirements, they could only own one home (among other things). Since they had two homes at the time and it was clear they likely would not be able to live on their own again, I wanted to get their home ready for sale as soon as possible should they need state assistance. I felt a tug of war inside between our sanity and their fears. Because we weren’t attached to their ‘stuff’, it was easier for us to let things go. Had we waited until one or both of my parents could have gone through everything, we would still be knee deep. At the time, my objective was reducing expenses, simplifying, and preparing for the future.
During this time, we also put one of my parent’s ill cats to sleep. Their other two (2) cats were with Felicity, and, while it took me a while to say okay to my mom, we agreed one of her cats could move in with us. My daughter Sarah’s best friend needed a place to stay. She was failing school and she needed a positive, stable home. I allowed her to move in with us, sharing a room with Sarah, provided she abides by my family rules. She lived with us the rest of 2010.. I am proud to say she earned her first “A” grade while living with us, became an A, B, and C student rather than a D and F student and she graduated high school. Just as Sarah’s friend moved out, Felicity moved in for two (2) months. Did I mention Felicity was in a second car accident, this time with my car, the end of January 2010? How could I forget this! As a consequence and for a few reasons, she needed to live closer to work and needed rides to and from work daily. There was never a dull moment in our home. It brings a whole new meaning to the term, “one big happy family!” In all seriousness, this took much loving support by and for all.
We got a family trust and we took care of things from that perspective for my parents. I was his power of attorney and handled all financial, medical, legal, and other situations for him. Six months had passed. The time had come for me to think about returning to work. When I left my job to care for my parents, we honestly didn’t think my dad would be alive to see summer. We thought it was really important to allow my parents to live and die in dignity together. As summer ended, Amanda and I agreed that she would become more of the primary caregiver for them, stay at home, and delay the next semester of college (She dropped out the previous semester due to the illness and injury of her grandparents) and I would return to work. Amanda was and still is my angel. I don’t know what I would have done without her.
Less than two weeks into my job search, a previous boss and another colleague I had worked with many years prior called me about possible opportunities in their organization. Shortly thereafter, I started my next journey with them and was so thankful the universe unfolded with just the right opportunity at just the right time.
Balancing a divorce, hospitals, surgeries, unemployment, my dad’s declining health, animal additions in the house, moving, moving, and more moving, rearranging and purging my home to accommodate my parents, my own health issues, daily responsibilities as a mother, countless doctors appointments, Felicity’s growing addiction to medication and health challenges is high on the stress list! Any one of these things can negatively affect one’s overall well-being. The biggest things I learned while balancing moving parts and 3 ways to juggle the balls that matter included:
1. I always carried a master calendar with me. I incorporated every single thing for everyone in the household in my master calendar. I knew when to get the animals vaccinated and when to give the dogs heartworm medication. I knew when to change the house air filters. I knew when it was time for car oil changes. My kids’ school events, testing days, meal planning, and the ever-popular doctor’s appointments were some things on the list. My book contains a comprehensive list for youJ It took some planning time up front, but it was well worth the time. This helped release my mind of all these things and allowed me to focus on the important stuff.
2. I started posting our weekly family calendar on the refrigerator every Sunday for the following week. Everyone was able to look at the week at a glance and my dad could (and did) refer to the daily schedule on the refrigerator multiple times daily. Anytime anybody asked me something about the schedule, I referred them to the kitchen. Things like who had dinner, trash, animal and other responsibilities each day were incorporated on this calendar.
3. I kept a journal and blog to write happenings of the day, my feelings about the day/week, and my sister kept a journal of funny things our dad would say or do so we could remember and tell him about it later. These things helped negative feelings from festering.
Here are 3 ways to juggle the balls that matter:
1. Develop or update a master schedule/calendar. As noted above, anything you can do to get out of the “I have to remember to…” cycle allows more space for the big things.
2. Assuming you have written goals for the year (if not, please start), review your goals against your monthly, weekly and daily activities. If you aren’t doing things to move yourself forward and you are in a care giving situation, just know that you are doing the best job you can with what you have. Please be easy on yourself and realize that the care you are providing today is what matters most. Even without set goals for each area of your life, you can still establish weekly, daily or hourly goals based on your life circumstances. Having this in mind when ‘checking in’ with yourself will really help keep you focused on that which matters most.
3. When spending time thinking about something; something that bothers you and isn’t changing, ask yourself, “Do I have control over this situation? Do I have influence over this situation? If you answered no to both questions, there is absolutely, positively nothing you can do about it and your energy must be diverted to things you DO have control or influence over. A colleague and friend of mine reminded me that if I had the power to change something, do it! In this particular case, I established boundaries for home space and that made all the difference for my overall well being. Sometimes, it’s difficult to see your own ‘stuff’; especially when you are smack dab in the middle of it.
Remember, if you are headed in the wrong direction and need to switch gears, you are allowed U-turns!!
Join our Facebook community at http://www.facebook.com/groups/EmpoweredFamilyCaregiver
©Copyright 2003-Present All rights reserved
Latest posts by Tandy Elisala (see all)
- Family Caregiving – A Stepping Stone to a Career - February 8, 2019
- Empowered Family Caregiver Blog Interview Highlights with Crystal Kelliher - January 3, 2019
- 7 Ways to Survive Being a Sandwiched Family Caregiver - December 19, 2018