Eleven months after Alan and I were married, God answered our fervent prayers for a child by bringing into our lives a much-beloved older person who was hospitalized with dementia and wasn’t going to be able to live independently again. Alan and I use the term “senior child” for several reasons, partly for the privacy of this family member, and also to reflect the transformative power of the gift we’ve been given.
We became the primary family caregivers. Long story short, this senior child now lives very near our home and parish in a specialized nursing home, and we have near-daily responsibilities. Though we are grateful for financial contributions sent from out of town, on the family end the two of us are largely on our own. Despite the excellence of the nursing home’s staff, our senior child refuses to be cleaned by anyone but us.
We assist with grooming, prayers, laundry and tidying, shopping, money management, healthcare and medication, transportation to appointments, connecting with staff and other residents, communicating with the rest of the family, and a lot of behind-the-scenes education about special needs as they evolve. Our bags have been known to carry junior juices (until the necessary fine motor control was gone), kiddie snacks, a portable DVD player, wet wipes, and extra clothing (because some of us have better judgment than others about how we need to dress for the weather).
It’s been almost three years since our senior child was willing to go outside for any reason other than medical attention, so we bring in most news of the outside world, in manageable soundbites. According to whether something is “interesting” or “boring,” we may discreetly switch topics.
As some rights are stripped away in recognition of diminishing capacities, one of the last that remains is to say no. The nursing home’s best meal of the day is served at lunch, but our senior child, who nevertheless manages slight weight gains, refuses to attend – and then both complains about dinner and severely restricts how much home-cooked food we may bring in! We caregivers have to pick only those battles that are truly about health and safety; otherwise, we do our utmost to honour choices regardless of our own preferences.
Our senior child has many fears. The consequences of upsetting experiences can last many weeks. Sometimes we are held to be grossly inferior beings for failing to grasp the gravity of an impending disaster.
Routines are comforting. We plan special occasions carefully, so they are joyful without being over-stimulating or threatening. Because we can’t light candles in the nursing home, we celebrate Advent with a toy wreath made of felt and velcro. I hold it, Alan leads the prayer, and our senior child “lights” the candle of the week. This winter we’ve discovered the calming effect of reading bedtime stories like Babar the King.
We give care as a couple. In ordinary providence, a young child’s two parents provide the earliest image of God. Where that need for security was compromised in the first instance by traumas in childhood, it matters that our senior child receives the love of a nurturing man and woman – and a very gentle priest – before going home to God. It’s all part of His extraordinary providence.
I wouldn’t want to minimize the social, health, and financial strains we’ve endured. Nevertheless, we’ve hit our stride in this role, and we’re very aware of all the benefits we’ve received.
We get to see Jesus (Matthew 25:31-46). Soon after Cardinal Collins arrived in Toronto he addressed charity leaders, warning us that Jesus wouldn’t always look like Himself in those we served. “He” might smell and “He” might not remember to say “thank you” – sometimes “He” might be downright hostile. Yep.
We’ve been forced to grow, individually and together, as our senior child changes. If we pray for patience, the Lord sends trials that test our patience. We’re stretched for our own sanctification. I won’t say I’ve never snapped at Alan out of sheer exhaustion, especially when it was time to clear out our senior child’s last home. I can honestly say, though, that both of us are better people for this experience, and we have a stronger marriage for it.
I can see what a good “father” my husband is. One of the reasons I fell in love with Alan in the first place was that he’s so very good with vulnerable people. Sometimes when I’m caught up in minutiae, my heart melts to see the playful, quietly competent side of my husband defuse some anxiety or other in our senior child. He was always compassionate, and yet he’s even more compassionate than ever. “Perfect love casts out fear” (1 John 4:18).
I’ve had to surrender my prideful self-reliance, over and over again. For nine-and-a-half months we worked hard on getting the right placement for our senior child, but we didn’t have a nursing home bed ready on the day a certain hospital representative got pushy about discharge planning. Would our senior child be forced into a dangerous and unwanted treatment, with unproven efficacy for a neurodegenerative illness, or be assessed an exorbitant daily rate not covered by provincial insurance?
I felt sick. I remembered that, once upon a time, there was no room in the inn for God’s own Son, and I implored His help. Being Catholic, I also asked the prayers of the angels and saints who were there for the Nativity.
I walked to Mass, aware that we had done what we could humanly do, and that inside our wedding rings is engraved, “With God nothing will be impossible” (Luke 1:37). I said, “this is bigger than me. You take it!” Within hours, we were notified of an opening at our facility of choice.
I wish I could say that moments like these have taught me perfect trust in God, but He’s still working on me. We thank God for this relationship and how He continues to shape us through it.
We know that more pain and loss lie ahead, and great beauty and triumph as well. And for all the world we wouldn’t give back the gift of our senior child.
