This part of Mom's story begins in March 2019, when she was diagnosed with angiosarcoma, an aggressive cancer of the lining of the blood vessels that often first manifests with dark spots on the scalp, because the scalp contains so many blood vessels. At this point, Mom (we'll call her "Joy" in this account) was living with Dad in an assisted living facility in Allen, Texas (Vitality Court). Mom had faced many difficult physical struggles in her later years, having had multiple back surgeries that left her with a back full of metal. (This was before current treatment technology had been developed that's less invasive and less prone to damaging consequences.) She could get around with a walker, but mobility was limited since she could not bend her back. Research on causes of angiosarcoma suggests it may have been the metal in her body that ultimately led to the development of the cancer. Mentally, she was swift and alert at age 82, and healthy in every other way, aside from the back issues and some accompanying nerve damage, leg swelling that's common with age when you can't get around easily, and now this cancer that had appeared so abruptly.
She endured six weeks of daily radiation treatment - an exhausting, physically challenging process given her limited mobility. Finally, months later, the cancer was 99% gone, and a surgery to remove a fairly large section of her scalp removed all that was there. She was free from the cancer. She was a fighter, and she had won. We were so proud of her.
On November 1, 2019, she had plastic surgery to cover the wound on her scalp where tissue had been removed in the earlier surgery; a conventional skin graft did not "take," as muscle had been removed, so the plastic surgeon said the solution was a “flap,” a transplant of muscle tissue and skin. The surgery was long and complicated and she was under anesthesia for around 8 hours. Prior to this final surgery, Mom had no memory issues that weren’t normal for her age. As mentioned before, she could still get around with a walker and go to the bathroom on her own. But because of being under anesthesia so long - which often causes harm to elderly patients - and just the stress of the surgery, she came out of the surgery very weakened and with some cognitive impairment. She started on a path of recovery and improved over time, transferring to a rehab facility (The Legacy Willow Bend in Plano, Texas). There, she continued to improve, but physically she was still very weak. She experienced some confusion at times but most of the time was coherent and could speak plainly, and she got to the point that physical therapists were able to get her up and walking; some days she could get across a room, while others she could not get more than a few steps. But she was slowly progressing. She had to be moved from the bed to the wheelchair using a Hoyer lift, because she was not yet capable of getting up on her own and using a walker without assistance - but she was moving in that direction.
Unfortunately, Medicare would not be patient while she recovered. Medicare notified the rehab facility that they would no longer cover her stay there after December 26. The therapists wanted to see her moved to an acute rehabiliation facility, but Medicare would not approve that (because apparently they knew better than her actual treatment providers). So we were forced to move her out at the end of December; we were only given until December 26, and we were told this barely a week beforehand.
We had to find a place where she could go that would be able to use a Hoyer lift to get her from her wheelchair to bed; Vitality Court, where she had been living with Dad, said she couldn’t come back there yet because they couldn’t provide the level of care she needed, particularly help with the Hoyer lift. We checked with other assisted living facilities in the area, trying to find one that could offer the assistance Mom required as she continued to recover and rehabilitate. They all told us the same thing Vitality Court told us - they didn't have the expertise to help with the Hoyer lift.
Enter Mustang Creek Estates, Frisco.
We were referred to Mustant Creek Estates (MCE) by an individual who worked for Senior Living Specialists. She said she'd heard that MCE was a "residential" community consisting of several houses with a limited number of residents in each one, and that some of the houses were for individuals who needed greater care and assistance. She suggested we talk to them, so we did.
Two siblings (we'll call them "Ben" and "Jenna") and Dad met with Samantha, the sales director at Mustang Creek Estates of Frisco on Saturday, December 21, 2019. In that meeting, Samantha promised that Mom would be checked every two hours, even through the night, and that even though there was not a nurse on staff, we should not worry because if the staff noticed anything wrong with Mom that required medical attention, the staff would call either a nurse, who was available to be called at all times, or 911 (this is very important to remember). She also promised that, upon arrival, Mom would be given an alert pendant, which Mom could press to notify staff that she required assistance. She also said that yes, they could assist with the Hoyer lift. (We did not know at this time that MCE's resident agreement specifically states that oral promises are not binding. More on that later.)
On the evening of Monday, December 23, Rachel Suter, the executive director of Mustang Creek Estates of Frisco, went to The Legacy Willow Bend to perform an evaluation of Mom to see what her care needs were. Rachel performed both cognitive and physical assessments of Mom. One sibling, Ben, was present for the entire time Rachel evaluated Mom, and he witnessed Rachel asking Mom many questions (such as what date it was, what her full name was, what the weather was like that day, etc.), and he heard Mom answer all of the questions correctly, coherently, and clearly. Rachel knew also that Mom required a Hoyer lift to be transferred and was unable to go to the restroom but instead had to wear adult diapers. Thus, Rachel was fully aware of Mom’s baseline condition.
We decided to move Mom to Mustang Creek, and also decided to move Dad to join her, though he would have to be in a different house since he didn't need the same level of care. Ultimately we imagined they would end up together in the same building when Mom was more mobile.
We had no idea how much we would regret making that decision.
Continue with Part 3.