After my father died, my brothers and I began to look out for Mom. We were overprotective. I can remember once she moved to Florida, she was living alone, and if I called her at 10pm and didn’t get an answer, I would panic. (This was before cell phones.) It was ironic given that she spent so many nights up waiting for me as a rather wild teenager.
We moved her out of the hospital and into the rehab facility. We had to get used to a whole new place, a new routine, new nurses, and our new normal. Remember, for the most part, we all really expected her to come back home when this was all over and life would resume with a few modifications. We would soon learn that there are specific milestones after a brain injury she had to achieve in order to go home.
We were told she would spend 30 days in rehab. We all essentially put our jobs on hold. Fortunately, we’re all entrepreneurs and all had our own businesses so we had that flexibility. I can’t imagine the stress of having a full-time job with a boss and having to navigate that. But we all took on a completely new job at this point. One that required all of our attention and resources.
We suddenly became project managers. We had a spreadsheet of our schedules to ensure that one of us was with her at all times. We had a list of each person’s tasks as far as her care was concerned. We were like a symphony. Jeff, a wealth manager by trade, oversaw the tangles web of financial issues involved in her care. Steve was her emotional support and often just sat with her over a meal or visited with her to provide some normalcy and conversation. I’m the organized one so I oversaw her daily needs from medications to clothing to the reorders of supplies. We kept a list of the milestones after a brain injury.
Weeks earlier, I had left my home, my husband and my beloved dog who was battling cancer, with nothing but a carry-on suitcase for a 7-day trip. Florida was warm when I arrived and we were now into December and the weather was getting cold. Shout out to Target for my new wardrobe.
Rehab was hard. Hard work. She had three hours of therapies a day – physical, occupational and speech. Our biggest hurdle was aphasia. She lost the ability to speak. The language center of her brain had been destroyed by the bleeding. Honestly, despite all the physical challenges, this deficit proved to be the hardest. Imagine not being able to tell someone you’re hungry. Or full. Or cold. Or in pain.
So tears became her form of communication. She’d cry when she was frustrated. She’d cry when she was tired. We timed our visits after her therapy sessions but often arrived to find her in tears.
But the great thing about a rehab hospital? She was getting intensive care. Really intensive care to heal her. And she was making great progress. She gradually began to walk the length of the hallways using her walker. She could feed herself, albeit messily like a child. She wore a bib. And held her utensils primitively.
More signs of her brain injury began to rear their ugly head. She would wake up during the night and her instinct was to get up and go to the bathroom. But the need for assistance, and a walker, were not part of that cognition. Her brain told her legs they could walk. But they could not. And her falling, and risking further injury, became our biggest fear. Falls are actually one of the leading causes of death among the elderly. A risk we were not willing to take. You know those buttons attached to a cord on every hospital bed? Just like her legs, her brain was unable to make that connection either. You need help, you push the button. It was a useless tool for us. So the hospital staff put us in touch with an agency who provided sitters, or certified nursing assistants. They would become, and still are, our godsends. At our personal expense, they stayed with her at night to protect her from a fall. And to give us peace of mind.
We celebrated Thanksgiving at the rehab facility. She had been making progress in feeding herself so we looked forward to some feeling of a normal holiday dinner. But her brain wasn’t particularly cooperating with her limbs that day and we watched with frustration and dread as she tried, unsuccessfully, to get food to her mouth. This was our new normal. So I sat next to her and fed her turkey and dressing, while my daughter looked on with sadness in her eyes. She had not spent much time with my mom as access was limited in the ICU and those early days in rehab. This was her fun-loving, cookie-baking, traipsing-across-Europe grandmother who was so incapacitated.
I pushed for Mom to leave rehab early once she hit the necessary milestones because I felt like getting her to her own home, in familiar surroundings, would snap her back to her old self. Her care team met weekly to discuss her progress and they followed protocols and pushed back against us. In hindsight, I’m grateful for that. If you’re interested in reading more about milestones following a brain injury, the Brain Injury Association of America offers some insights.
But the day finally came when she could be released. Well, actually, Medicare made that decision for us. But we were about to be promoted in our roles as caregivers. To jobs we were not qualified for.
- Chapter 1: The headacheI was standing in the baby aisle of Target shopping for sippy cups, picture books, and baby wipes. It suddenly occurred to me that I had not been in this aisle for 20 years but here I was again. Only it wasn’t for my kids or my grandkids, I was there shopping for my mother. I was buying bibs and burp pads for my own mother. My eyes welled up with tears. I wanted to…
- Chapter 2: Sundowning and temper tantrumsI volunteered to spend the first night in the ICU with her. Volunteered is really not the right word. I could not, would not, leave her side at this point. I’m a news junkie. I love watching the news in case I can witness a sensational breaking news story. I also stop at car accident scenes in case I can witness some heroic life-saving endeavor. I guess the same was true there in my mom’s…
- Chapter 3: (Re)Learning milestonesAfter my father died, my brothers and I began to look out for Mom. We were overprotective. I can remember once she moved to Florida, she was living alone, and if I called her at 10pm and didn’t get an answer, I would panic. (This was before cell phones.) It was ironic given that she spent so many nights up waiting for me as a rather wild teenager. We moved her out of the hospital…
- Chapter 4: Making sh*tty decisionsAs we prepared to bring her home from the hospital, planning to ride out those six months to get our mom back, we reconfigured her home for our new normal. We converted the kitchen pantry to a bathroom that could accommodate her walker and unpredictable gait. We installed raised toilet seats with handrails and grab bars in her shower. We lowered her bed to the floor because she still tried to get up every night.…
- Death is birth in reverse: A daughter’s diaryI’ve been wanting the tell my mother’s story for some time. She was full of life, my best friend, but that was all cut short by a reaction to a medication that caused a brain aneurysm that has left her severely incapacitated. I was going to write a book, but thought it might be more beneficial to share it here, in real time, where I can offer resources and live links for others who may…