By Karen L. Jerome, MD
Caregiving is difficult and maddening at times. You may think you know what’s best for your family members, but they don’t always agree. So, seize the opportunities when they arise. Somehow things eventually work out.
My parents reside in independent living in a senior community thanks to significant support from me (and my husband and sister and brother-in-law). My mother, 91 years old, has advanced dementia, significant hearing loss (despite hearing aids), and poor vision due to macular degeneration. Her primary caretaker has been my 92-year-old father, who has severe osteoarthritis and waning cognitive function as well. Several times, we’ve tried to bring aides into the apartment, but within 2 or 3 days my father has insisted on dismissing them. My mother gets angry and belligerent, and my dad doesn’t want to deal with that. I’d been waiting for a catastrophic event to occur.
We got lucky, as the event wasn’t as catastrophic as it could have been. My father had an episode that required hospitalization. While he was in the hospital and subsequent rehab facility, we set up 24/7 aides for my mom. When he returned home we made the continued presence of aides nonnegotiable. We were able to eliminate the overnight help, but we have 12 hours of aide support 7 days a week, now going on 3 months. We held our breaths after day 2, 3, 7… continuing to expect my dad to chase them away. Now we no longer worry about that. That’s partly a testament to his waning strength and cognition.
But this hasn’t been easy. In fact, it was easier when my dad wasn’t there because my mom couldn’t try to get him to intervene and chase away the aides. He’s finally been convinced to walk away when mom acts up, and the aides are eventually able to get her to calm down enough to allow them to help her bathe, dress, eat. The other big struggle has been getting him to understand that the aides are now responsible for dispensing mom’s medications. It took signs, hidden medication, and finally a locked medication box to finally get him understanding and on board with the aides giving mom her medications.
Dad has spent years complaining about how busy he is since he’s had to do everything for mom. Then he started complaining about not being allowed to take care of her. Their wonderful primary care physician told him, “Love is infinite, but your physical capability is not. Now you have the help you need to be able to be with her but not be responsible for her care.” My dad heard that, but it’s still hard for him to completely embrace it.
And we’ve been really fortunate with the home care agency and the aides, particularly the weekday aide, who is very smart and organized. She keeps me posted about supplies that need to be replenished, and even gives me enough lead time to purchase the items before they’ve completely run out. That was a constant struggle with my dad. Not infrequently he’d call and say they’d used the last _____ (insert name of a grocery item, medication, cleaning supply). Just this week, she caught a mistake I’d made placing my mom’s medications into the containers for dispensing. She called and we got it corrected. And when mom curses out the aide and I apologize, the aide gently says, “It’s not her; it’s the disease.” I finally have some peace of mind, knowing that they are responsibly supervised and cared for every day.
Then there’s the long-term care insurance. But that’s a story for another time…