By Karen L. Jerome, MD
I arrived at the apartment toting 4 bags of provisions—Ensure, Depends, vanilla pudding, and some groceries for my dad. I’d been there 3 days before, carrying another 6 bags, but here I was again, arms laden. It was 3:45 pm, and Mom was sitting in her usual spot in the living room, the gray armchair covered with a towel. The TV was blaring. She was still wearing her nightgown, had her shoes on the wrong feet, and her dentures were in their container in the bathroom. I was surprised that she wasn’t dressed and thought maybe she’d slept late. Nope, Dad told me, she’d been up for hours and had eaten breakfast and lunch. She’d simply declined to get dressed. And my dad wasn’t going to fight with her. I knew that she’d eaten, as there were food drip stains all down the front of her nightgown.
I offered to help her shower and get dressed, as we had a dinner date at 5 with a family friend. She declined, at least without yelling at me. There would be no shower, but I knew that I had to coax her into clothing before we went down to the dining room. When I suggested that she get dressed, she said that she didn’t want to do anything now. And she asked for a candy. She obsessively eats hard candies, often asking for the next well before she’s finished the one in her mouth.
A few minutes after placating her with a candy, I suggested she come into the bedroom and get dressed. She agreed. I was able to get her into the bathroom and wash her face and apply some lotion to her extremely dry, scaling skin. Also got some “dry shampoo” into her hair and combed it. Fished her denture out of its container and cleaned off the slimy tissue remnants on it, brushed it, applied Fixodent and got her to insert it. She dressed herself in the outfit that I chose, and I laid out her shoes so that she got the correct ones on each foot.
And off we went for the interminably slow walk down the hall, where we successfully dodged the neighbor’s tootsie roll-filled candy dish and made our way to the dining room. A couple of weeks earlier, I took away the tootsie rolls she’d snagged, explaining that she could choke on them. That attempt to keep her safe was greeted with an angry, “Fuck you.” I returned the curse in kind.
Fortunately, her short-term memory is essentially non-existent, and in no time at all she was taking my hand and kissing it. If only I could forget some of this. My mom turned 90 years old this summer. I wish she could still enjoy this long life with which she’s been blessed.
Alzheimer’s disease has robbed her of her mind. Macular degeneration is gradually stealing her sight. And she was too vain to begin wearing hearing aids until a lot of her word discrimination ability was gone. So, my 91-year-old dad, whose cognitive skills aren’t what they were, takes care of her as best he can in their two bedroom independent living apartment in a senior community. I live 20 minutes away, visit often, and have made a (surprisingly) few emergency trips there in the 4 years they’ve lived here. We tried to bring an aide into the apartment, but Mom would have none of that. And though she’s lost many skills, she can still obstinately shout about things when they piss her off. “Who is this strange lady in my apartment? I can take care of myself/my husband can help me.” Then we considered moving Mom to the memory care unit in the community. She still knows who Dad is and asks for him if he’s out of the room. She still knows my sister and me. Dad decided it would be too cruel to lock her away in memory care. So, we’ve abandoned that idea for now.
We muddle along, bribing her with chocolate to get her to take the rare shower.
As my husband, who often helps me tote the huge amount of stuff it takes to sustain two elderly people in their little apartment, says, “We’ll keep doing the best we can. Nothing will change about their living situation until something catastrophic happens. Hopefully, it won’t be too bad a catastrophe.” Sadly, he’s right.
It just sucks that I can’t make things better for them. I’m a primary care internist by training and have navigated them through medical situations. I’ve kept them out of hospitals or quickly gotten them home from hospitals. I talk regularly with their physician, and we decide together how best to optimize their medical conditions without causing undue burden. And, he checks in with my dad about “caregiver burnout.” Our situation is so much better than that of many others, but it is far from ideal.
How do we change/improve/fix dementia care for the many, many patients and families now suffering from it and for the increasing numbers who will follow the current millions? And I’m not just talking about finding drugs that work, though that would be nice. I’m talking about the need to create an infrastructure to support patients and their caregivers. We’ve got to have a better approach than simply leaving each family to cobble it together. I don’t yet have answers, but I’m ready to start trying to help figure it out.
To join the conversation, view AMWA’s Caregiving Initiative.
Join AMWA’s special screening of the film, Wine, Women, and Dementia this month with a special discussion with filmmaker Kitty Norton and Dr. Karen Jerome.