After I returned to work following maternity leave, my mom took care of my son during the day. This put us in almost constant contact, and it was obvious when the occasional repeated story became a daily occurrence (sometimes multiple times a day). After I brought this up to my dad, he admitted he’d noticed the same thing.
Months went by before any appointments were made to investigate what was going on. Even then, her memory loss was attributed to age-related brain shrinkage and dismissed as normal. She did fine with most things still and continued to watch my son occasionally. She was told to do brain-boosting activities, eat well, and exercise. That was nearly 10 years ago.
The turning point in my mom’s disease.
When she started to misplace items and blame my son and struggle with managing her emotional responses to typical kid behavior, we knew her time as a capable caregiver was over, and we were slipping into her needing a caregiver herself.
Today, my mom is one of seven million Americans living with Alzheimer’s. Her disease has progressed to the point where she’s completely dependent on my dad for care. She’s also the happiest and most calm when he’s around, and English isn’t her first language, so it’s difficult for almost anyone else to care for her between her inability to speak and understand English and her difficulty with expressing herself in any language.
I can see the toll this takes, and I admire how well my dad cares for her and keeps her socializing as much as possible. They host friends, go out to restaurants, and travel together, taking advantage of the time they have left before it becomes impossible. I know, as hard as it is, harder days are coming.
It also isn’t my first experience with the disease. In my 20s, I watched my mom struggle with caring for her own mother. I heard bits and pieces of the stories of what it was like for distant cousins caring for their aunts, too. More recently, we lost my stepfather-in-law to Alzheimer’s. My mother-in-law cared for him until he passed, navigating doctors who refused to believe her accounts of his deterioration and eventually hospice services that left her feeling she was an inconvenience when she called with questions.
The treacherous landscape of US senior care.
The Baby Boom was always leading us here. An increasingly aging population with medically complex care needs and declining ability to live independently means more support and care work spread across fewer caregivers today. While caregivers across most cultures are women, and in the US, those women are seeing an unprecedented demand on their 24 hours. Work, childcare, school support, kids’ activities, and elder care.
With recent cooling on immigration, we’re decreasing a key demographic of caregivers available for hire, further straining support systems families need. Especially families managing the care of a loved one with Alzheimer’s, where mood swings, sleep disturbances, incontinence, frustration around inability to communicate, and safety concerns create an exhausting 24-hour care cycle.
Figuring out what’s most important to me.
When I look at my mom, I see a very real possibility that I’ll travel a path similar to hers. And that is why I’m already thinking about what matters to me and why my husband and I are having skilled care conversations decades before we potentially need them.
We’ve talked about what is most important to us if I need care: that our relationship be preserved as it is today. Rather than shifting to full-time caregiving, I want my husband to have the energy to spend time with me in the ways we enjoy. I want him to have the freedom to nurture his relationship with our son. I want him to take care of himself and have the time and ability to do that without worrying about how it fits around my care.
No one is looking forward to their golden years spent in a care facility. Their reputations precede them. They signal a great loss of independence. Often, the quality of care is called into question. These are often places of last resort. To me, a skilled care facility is my first choice.
A skilled care model that’s driving my decision.
I’ve been fortunate to see a different kind of skilled care model grow and thrive with The Restoracy. Small homes with private rooms (regardless of your method of payment), chef-crafted meals prepared and served in each home with input from residents, and caregiver-to-resident ratios that put every other facility to shame. With only 12 residents per home, open visiting hours, and well-supported staff, it feels like the next best place to my own home.
I don’t know the shape these conversations would take if I didn’t know about a different model focused on nurturing both human dignity and health. I know for certain that I wouldn’t feel the level of peace I feel now about a future devastating diagnosis. That peace is what I’m holding on to while I soak up as much joy and whimsy as I can.