Helping Mom stay at home

My mother came to live with my family after my father died. Age and Alzheimer's disease had rendered her unable to live on her own. As is customary with most people who lose a spouse, grief and confusion came on strong and worsened her dementia.

Caring for her was much harder than we expected. We often felt trapped and overwhelmed. My wife and I had had three family members die in the previous two years and had also welcomed our infant daughter; but we were eager to have Mom live with us rather than in a nursing home.

The biggest challenge was lining up help. Friends and relatives were great. Siblings would "spot us" for a weekend; many friends would spend an evening with Mom and our infant daughter -- no small task. ("After I finally got them both to go to sleep, I sat in the living room and didn't make a peep because I was afraid of waking them," a friend told us later.)

The situation forced us to ask for help, often and even loudly. "Ask and you shall receive," Christ tells us. Asking is not fun, but it does stretch one's human dimensions. Being in need, and saying so, hurts -- but it gives others the chance to respond.

We patched together paid services: Mom attended programs at the local senior center; a kindly woman sat with her in the afternoon; a home health aide visited a few times a week. Friends and family filled in some gaps. We accepted that we were going to be there, with Mom, most of the 24/7 time that ticks slowly through a life.

During the year she lived with us, she seemed to go downhill rapidly. Often we needed even more help; often, asking and arranging was the hardest part.

That's where and when programs such as Catholic Charities' CHOICES, profiled in this issue (see page 13), can help. These programs can assess what's needed and then line it up -- invaluable to caregivers. 

Ideally, these programs can help families know which service will actually deliver on the goods. With my Mom, we had several disappointments: the weekend hospice service that rejected us because she wasn't self-sufficient (hospice for those who don't really need it?)...the day program whose manager made snap diagnoses drawn from the pages of "Psychology Today" magazine...the doctor who refused to discharge her from a hospital unless she left in an ambulance instead of letting me preserve Mom's dignity by pushing her in the wheelchair two blocks home.

Indeed, most services for the aged are great, but some are more hype than substance. Since our struggle to keep Mom at home, the situation has improved.

For practical and humane reasons, there is a national drive to keep people in their homes rather than packing them off to nursing homes where most eventually land on Medicaid and cost us all tons of money.

When asked where we want to live out our years, most of us say, "Right at home." It preserves our dignity and health while keeping society rich with a mix of people. It gives us all a chance to help and be helped. Even in her dotage, my Mom could sit by baby Madeleine's crib and stroke her head while I cooked dinner.

Making our homes, and our neighborhoods, suitable for aging parents makes these better for us -- now and as we, too, grow older. Sidewalks with safe crosswalks, for instance, help those who don't drive anymore as well as the rest of us. The curb cuts that help people who use wheelchairs also benefit parents with strollers and kids on scooters. The grab-bars we installed in our house for Mom later served our kids and friends with impairments. One day, we'll be reaching for them ourselves.

Mom lived another five years -- with us and then in a nursing home down the avenue. The rewards were unexpected: the pleasure of just sitting and holding her hand, gazing into her eyes as she looked back, communicating love and regard in ways that words never could.

In a fulfilling symmetry, our first daughter was learning to walk, talk and relate to others just as Mom was losing those abilities. We had the comic moments of helping her in the bathroom, of pushing her wheelchair along bumpy streets to Mass, of wondering how we'd cope with the latest challenge.

The best of those times, the richest and most humane, were at home. Today, more of us should have that chance. With a little help, we can.

(06/19/08) [[In-content Ad]]