It’s been over two years since dementia made it unsafe for Mom to live alone. After we moved her into my house, I avoided going to hers. The sight of her carefully arranged things filled me with grief. But now our family needs to rent her property to help pay for her care. Cleaning out the rooms is tough. Notes on her desk, her shoes in a row — every inch of the place bears sad reminders of the woman she once was.
The ties between us never frayed as her disease progressed. I’ve witnessed her loss of skills and — from close range — I’ve watched the transformation of her personality. With such focus on her growing frailty, I had forgotten what she was like just six or seven years ago when she still mailed birthday cards like clockwork.
Walking through her old bedroom, I cried while reading short reminders she’d written to herself. My mom was such a diligent person. She cared about small details in a way that amazes me. I’m random, energetic and impulsive. Things always get done, but I rarely plan and execute projects with her kind of precision. This was one of those personality differences that made us get annoyed with each other.
As I looked around her little office the other night, I couldn’t feel anything but admiration for the way she managed her life. She was so careful and attentive. The walls were lined with tokens of love from her many friends. Smiling photos, silly cards. It’s the stuff we can’t look away from when we sift through the remains of her life — that’s who she was.
We are so lucky that we still have her. Light shines through those eyes even as we feed her soup and comb her hair. Her love is the one thing we hold onto while the woman she was retreats to memory. Sometimes it hurts to be the steward of her past as well as my own, but it’s part of the caregiver’s job. And I guess that’s now who I am.
Transitions can be a bear. Given the choice, most of us would rather keep doing the same things, even when our habits have long outlived their value. It’s no wonder that elders with dementia resist changing their living situations long after they’ve lost the skills needed to manage daily life.
If you look at transitions in a larger context, it’s pretty clear that humans are both terrified and excited by them. Big changes can provoke us to strive toward growth — or crash into failure — and this process starts early. During the transition from middle to high school, many students stumble academically and continue to slide downhill. Statistics from the National High School Center show that a disproportionate number of ninth graders are held back in ninth grade, prompting many of them to drop out of school by tenth grade. The transition to college is just as hard. A 2010 study by the Organization for Economic Cooperation and Development (OECD) showed that the United States finished last among 18 developed countries “for the percentage of students (46%) who completed college once they started it.”
If we balk at life transitions that have a lot of hope and promise attached to them, it’s easy to see how stressful change must be for elders whose declining skills force them into new situations. Although my mom’s advancing dementia had clearly reduced her ability to manage daily survival, her resistance to asking for help was tremendous. We tried talking her into getting an aide or a housekeeper, but she felt this was a ridiculous intrusion. She was also sure that her children could do what hired helpers might — even though we lived hours away from her and could barely manage our own lives while monitoring hers. A crazy work schedule had turned my hair into an overgrown mess, but Mom was deeply offended when I said I didn’t have time to chauffeur her to a salon.
We finally persuaded my mother to modify her living situation when a burst pipe flooded her kitchen. The leak scared her enough to make her move in with me “temporarily”. Proceeding by baby steps, our family helped her slowly get used to living in a different house, with a new routine. Her quality of life improved dramatically. But she never would have believed that at the beginning.
An article in the June/July 2012 issue of AARP magazine suggests that these smaller moves toward a bigger life change can help ease the transition process for elders who cling to old homes and habits. Susan Johnson of Care Management Associates suggested providing help “in spoonfuls, not buckets”. It’s better to start by offering to hire someone for a task your loved one doesn’t like, such as cleaning house. As things progress, include the elder in decisions about managing other chores that present difficulty. If a parent feels like you are ordering them around, they may present even greater resistance to change.
Small things like the end of a beloved TV series or the closing of a favorite store can make us very sad, so imagine how hard it is for elders to say goodbye to an entire life’s worth of well-worn habits. The need for transitions will never disappear. But we can make change easier if it’s wrapped in some gentle wisdom.