In the beginning
Most people find themselves plunged into the role of someone’s caregiver overnight. I had to fight for it.
I am one of four kids — the youngest. I was the only kid who stayed near our mom and dad. I grew up as an Army brat and moved all the time, so family was everything to me. When I had the chance to move away with my husband and kids in 2004, I choose to stay near my mom and dad in the community where we had started to plant roots.
I had a great adult relationship with my parents and saw one or both of them a couple times each week. Every Friday they would come to my house for family pizza night. In 2005, I started to notice changes in my mom. She was repeating conversations and seemed quick to get agitated about simple things. When I mentioned it to my siblings at a family Christmas, they all poo-pooed my concerns. Thankfully, my husband was seeing these changes, too, and assured me my worry was warranted.
By 2007, I was having active discussions with my parents about Mom’s memory. My mom insisted that Dad had the memory problem, not her. Dad was willing to go see a neurologist who specialized in cognitive benchmarking, but my mom would slither out of each agreement to see the doctor.
As the adult child, there was really nothing I could do to help at this point. I offered to accompany my mom to her annual physicals, and she accepted. However, once we were with the doctor, she denied having any concerns over the repeated conversations and her doctor let it go. I eventually resigned myself to quiet vigilance.
I took solace in the fact that my parents had updated their estate plans in 2002 and already had a spot in a continuing care retirement community. Even if they wouldn’t move there full-time right now, they had a bed for any future care needs they might have.
During this time, I realized that I was going to have to wait for a critical incident to occur before my parents would make any changes to their lives or accept that they might need some help managing their personal affairs.
The warning shot
Mom had a stroke in February 2009. It turned out to be a very minor ischemic stroke, but I was still worried about her health. She didn’t have much short-term memory at this time and was unable to remember having a conversation she started 3 minutes prior. During a follow-up visit, her neurologist validated my concerns. We learned that she had a previous stroke that had gone undiagnosed. This probably contributed to the short-term memory issues I had been noticing for years.
Because the ischemic stroke didn’t leave any physical reminders, like paralysis, my mom had a hard time believing that the stroke had even occurred. Looking back, I’ve realized just how difficult this was for my mom. She was struggling to maintain her day-to-day activities without being able to fully comprehend the loss of her short-term memory. Now I see that she had anosognosia, a condition in which a person who has a disability is unaware the disability exists. Anosognosia occurs in up to 77 percent of those who experience a stroke.
After the stroke, each of my siblings came to town to visit. They all reported that Dad, the convivial joker of the family, seemed depressed. They took him to the doctor, who ran some tests but determined that there was no reason for us to be concerned. The doctor did, however, refer us to a social worker. She visited our parents in their home and reported that our dad was most likely not taking his medications as prescribed. This may have contributed to the changes we were seeing in him.
With this new revelation, my siblings and I were finally on the same page. We set up monthly calls to check in with one another and discuss how our parents were doing.
Critical incident #1: Breaking bones on the court
My dad used to play racquetball at 6 a.m. at least three times a week. In 2010, my mom called me from the emergency room to tell me that he broke his hip on the racquetball court. Given his current physical health, I wasn’t really worried about him bouncing back. That changed when I learned that any surgery involving anesthesia could cause complications because of my 79-year-old father’s age. Fortunately, the surgery went well.
During his hospital stay, it became clear that dad was dealing with cognitive issues of his own. He wouldn’t respond to simple questions or engage in any conversation. At one point, I wasn’t even sure whether he recognized me when I walked into his hospital room.
When the doctor decided to discharge my dad four days after his surgery, I had to call in the social worker to help. They were discharging my dad into my mom’s care. She was 5 feet, 8 inches tall and weighed around 110 pounds — she would never be able to help him up the stairs of their 3-level townhome. What was the doctor thinking?
Thankfully, I was able to get my dad into the rehabilitation wing of the continuing care retirement community they had previously signed up for. We had hoped this would convince our parents to reconsider selling their townhouse and move into the community full-time. Within a month of being discharged from the hospital, my dad was up on his feet and by the third month, he was back on the racquetball court.
During the course of dad’s rehabilitation, my siblings and I each took turns visiting our mom. Everyone recognized that Dad was struggling with short-term memory. We all saw how cluttered their home had become and noticed piles of papers and bills, as well as quite a few new dings on his car.
We scheduled our first intervention shortly after his return home. We said it seemed like they were both experiencing issues with their short-term memory. We asked them why they hadn’t moved into their retirement community full-time, and reminded them that they had agreed to do so when the time was right.
They told us they weren’t “old enough” yet, and that they’d move in when they needed to. When we suggested that they did need it, they continued to dismiss our concerns and ended the conversation.
Over the next year, my mom signed two contracts for the same home repairs, failed to pay the water bill for so long that it was turned off, and frequently called to ask how they were supposed to put money into their bank account. At this point, we were worried that they could no longer handle their own financial affairs, so we had a second intervention during Christmas 2011.
This time, we provided them with a list of the issues we were seeing and the dates when these incidents occurred. Our parents angrily asked us to leave their home and chided us for making up such horrible stories about them. My siblings and I left feeling helpless and unsure of what to do moving forward.
As the only local child, I realized all I could do was call and visit them more often. At this point, I was overwhelmed by the demands of motherhood, being a full-time employee, and trying to be a good daughter. By the end of 2011, I transitioned out of my full-time job and began to work part-time on a business to help other caregivers.
Critical incident #2: Driving without a license
In the spring of 2012, a social worker from a military hospital near my parent’s retirement community called and invited me to come in and meet with her. Apparently, over the course of two days, my parents had arrived in the ER of two different military hospitals in the metro DC area.
One was close to their townhouse, and the second was close to their retirement community. Remarkably, the same doctor, Dr. Johnson, was rotating through the two hospitals. She was assigned to them on both occasions. By the time they met with her, neither my mom nor dad knew why they had even come to the ER.
The social worker made an appointment for me and my parents to visit with Dr. Johnson. She explained why she called us in and let my parents know that she was filling out the paperwork to revoke their driving licenses. My parents were in utter disbelief. They had no recollection of this doctor or their prior visits to the ER, and were angry that somehow that meant they would be losing the right to drive.
When my parents received the official paper revoking their driving privileges a month later, I made copies. They continued to drive, so I showed them copies of the letters, which they defiantly tore up.
Distraught by this new development, my siblings returned to the area for another meeting with our parents. Instead of listening to our pleas, our parents pulled out their licenses and angrily shook them at us as if that was proof they could still drive. We decided to take matters into our own hands and removed their cars from the premises. We stored their cars in a rental space for about a month before selling them and putting the money back into our parents’ checking account.
Critical incident #3: Passing out in the kitchen
By fall 2012, I was spending about 20 hours a week tending to my parents’ needs. They refused to move into the retirement community full-time and were now taking cab rides back and forth between their two homes.
My parents would call me two to four times a day, sometimes to ask the same question again and again. Sometimes they would just want to know what day it was, and other times they needed help with bills or groceries. I was so fearful for their safety that when they called and asked for help, I would drop everything and show up. My parents had no real recognition of how much time I was spending with them in an effort to help manage their day-to-day lives.
It was impacting every part of my life. I was so focused on managing their follow-up doctor visits, I was failing to take care for my own health. I was skipping meals, missing time with my husband and kids, and ducking out of social engagements to be there whenever my mom called.
One night my mom called me in a panic because Dad was on the floor. This was a call I was getting regularly. Unfortunately, my dad would unwittingly drink one too many evening cocktails and lay down on the floor to go to sleep. My mom didn’t realize that he had basically just passed out and was frightened because she couldn’t get him to come-to.
This time I didn’t get in the car; instead, I told her to call 911. A switch had flipped in my head, and I realized that I wasn’t helping them — I was enabling them. This incident resulted in both of my parents receiving long-overdue diagnoses. The ER staff recognized that something was cognitively wrong with both of my parents. Mom was diagnosed with vascular dementia and Dad with Alzheimer’s.
The incident that mattered
In January 2013, my parents’ continuing care retirement community told me they were cancelling my parents’ independent living contract and requiring them to move into the assisted living community. My parents needed to move for their own safety.
In the days leading up to the move, I was physically ill over the stress and subterfuge. When I told my parents they were moving, they became incredibly angry. They threatened to move out of the community and back into their townhome permanently. I didn’t bring it up again, but called in my siblings to help manage their move.
During my first visit post-move, I was relieved to find them both happy and calm in their new apartment. For the first time since this all began, my mom handed me the mail and asked if I could take care of the bills. At that moment, I realized that my parents had finally accepted my role as their adult caregiver.
This moment was a long time coming — four years, to be exact. I was honored, relieved, and ready. I believed it was going to get easier, but little did I know, the next phase of my journey was just beginning.