Diary of a Caregiver
Parenting a parent in the power of God.
by Julie Guirgis
It’s nearly six o’clock on a damp evening. I’m winding down from a day’s work and thinking about preparing dinner to give Mum a break. Then Dad appears in the kitchen doorway and asks, “Am I going out today?”
Suffering from dementia, he can no longer tell the time and is even losing the ability to sense which part of the day it is. For him, six in the evening could easily be six in the morning.
“The day is over; it’s nighttime,” I say. “Look outside.” I don’t shout, but the edge to my voice could cut steel.
As soon as I’ve spoken sharply, I regret it. Why did I say that? I know Dad doesn’t understand. Sometimes I wipe away a tear and vow to do better tomorrow. And then, five minutes later, when Dad asks me again, “Am I going out today?” I know I’m probably not going to succeed.
A week later I have another restless night. Dad wakes up at 4:00 a.m. saying he’s hungry, so I make him a couple of toasted sandwiches and stay up with him till he dozes off.
The constant vigilance, broken sleep, despair, and frustration have taken their toll. Every day I must deal with the constant arguing, pleading, guiding, and grinding routine while ignoring the knot in my stomach.
Everyone wants a piece of me; I’m being pulled in a million directions. A typical day consists of Mum and I preparing breakfast for Dad, changing his clothing and Depends, giving him medication, and being close to him to ease his intense anxiety, caused by thinking we aren’t there.
By the end of the day, I drop into bed, my body and mind drained. Nothing of myself is left for me. I feel like a robot some days, automatically doing what I need to do.
Maybe I need some outside help, I say to myself. I have rung several respite agencies in the community and put Dad’s name on the waiting list. It’s just a matter of time before there’s a vacancy. I have also arranged for him to go to a day group one day a week so I can get some relief.
But the day group says they can no longer provide care for Dad because his needs are becoming too great and his anxiety disturbs the group. “We may have to look into Dad going into a nursing home for a week,” I suggest to Mum. Even though I’m reluctant to do this, Mum and I are desperate.
The nursing home looks like a house of horrors, with walls painted a nauseating shade of yellow and furniture dating back to the 1960s. Besides being old and decrepit, the atmosphere is institutional-like and lacks warmth. Residents slump over in their chairs, lifeless.
One day when the nurses tried to shower him, Dad became aggressive, so they dosed him up without our permission. Now he looks like a zombie, staring blankly into space.
My thoughts spin. I can’t stand to see him so lifeless in this beat-up room. The bed is raggedy and old, the walls stained from years of neglect. No toilet or basin — just the bare essentials, a bed, and tiny wardrobe. The following day I bring Dad home.
During my quiet time, God comforts me with Matthew 11:28-30: “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light” (NIV).
I don’t realize how much I need to incorporate this scripture into my daily life as a caregiver. I also don’t realize how much God will use it.
I get the first indication today when the respite agency calls. They tell me they can provide one-on-one respite for Dad five days a week. They will take him for a drive and a walk each day for a couple of hours, giving Mum and me a well-deserved break. Thank You, God! That will help us so much.
I’ve learned that dementia can be a spiteful and cruel disease, traveling with its hideous companions of delusions, aggression, agitation, selfishness, and constant demands. Like a self-centered child, Dad often yells to get what he wants, even throwing tantrums at times when the task isn’t done right away.
Dementia is an impostor trying to steal Dad away, to cast shadows between us. When I feel strong, I can push it out of the way, to find remnants of Dad. But at other times I succumb to its menacing power. These are the days I would gladly hand him over to someone else, even for a few hours.
This year has been better than last. I feel that I’m adapting to Dad’s illness more and have more outside support. I’m learning how to provide a safe and placid environment for him.
The way I speak to him, including my tone of voice and words, makes a huge difference in his reactions and emotions. When I speak in a calm and loving way, Dad feels safe and reassured. But when I’m loud and aggressive, he mirrors me, making our relationship volatile.
Still, our relationship is getting stronger, and I feel closer to Dad now that the wedge of resentment has dissolved. His childlike innocence is disarming. He often asks me to cover him with a blanket the same way a child craves a security blanket to soothe him. Once I do, he curls up in bed like a baby and closes his eyes. He looks so sweet and peaceful. I feel like a mother caring for her infant child.
Dad’s fragility and vulnerability inspire me to nurture and care for him. When he’s disorientated, I provide gentle love and comfort to still his turbulent mind. When I see him struggling to walk properly as he shuffles across the floor, I offer my hand to him so he won’t fall.
I have a change in attitude too: I see that there is no higher honor than to serve my dad in this time of great need. He did it for me as a child; I am privileged to return the favor.
Help for the journey
Although the journey is long, hard, and emotionally exhausting, I find quiet moments to rest and retreat. To wind down, I watch TV, read, listen to music, and pamper myself. I love having my nails done and getting massages. Caring for myself must be a priority so I can effectively care for my father.
Through it all, God has given me the strength to get through each day. I don’t know how much longer Dad will be alive, but I do know that God is true to His Word and will never leave me or forsake me (Hebrews 13:5b). In this I can find rest for my soul.