My journey of faith through my mother’s dementia
I’m not going to pull any punches with you,” the doctor said. “This is not going to get better.”
He had just diagnosed my mom with dementia, an incurable disease causing profound memory loss, and I was somewhere between offended and horrified that he was speaking so frankly in front of her. More importantly, I disagreed with him. I believed in God’s ability to heal a body, mind and spirit. Though I didn’t say it, I thought, Don’t tell me my mom isn’t going to get better. I don’t believe that, and I am not going to accept your negative assumption.
But he was right. Over the next few years, Mom’s condition progressively worsened as she experienced memory problems, including the inability to remember names, people or events in recent history; combativeness in conversations; loss of coordination, especially eye-hand coordination; slowing reflexes, which resulted in bumps and falls; confusion over days and time; unwarranted fears and suspicions; hoarding and possessiveness; urinary incontinence; unusual moodiness; inability to follow a story; and loss of appetite. Most disconcerting to our family members was our godly Christian mom’s uncharacteristic use of profanity, prompting one of her grandchildren to declare, “Wow, that doesn’t even sound like Grandma!”
People with dementia frequently develop habits of hiding things; they become suspicious of other people, often accusing them of stealing personal items. My mom did that constantly; she’d hide her purse or her driver’s license, wouldn’t be able to find it and then declare that someone had stolen it. I can’t begin to count how many times she lost her cellphone in her condominium.
With some dementia victims, the symptoms happen almost overnight. With others, the disease conquers the human body and spirit gradually, imperceptibly. If you know the signs of Alzheimer’s, you may pick up on them and secure help. Otherwise, you’re more likely to see the early indicators only in retrospect. You may look back and be able to pinpoint a particular incident where you can say, “After that occurred, Mom was never the same.”
In my mom’s case, something significant happened when she suffered a series of mini-strokes. Unknown to our family, the “Mom” we knew had left the building.
Confronting the Family Intruder
What did my family learn and what tips worked best for us in coping with dementia in a loved one? Mostly, we discovered that we were not dealing with stubbornness, rudeness or insubordination on the part of an aging parent, but we were confronting a powerful disease that was incrementally taking control of our mom’s brain. The most helpful tips I can pass along to anyone caring for a parent who has become a child include:
- Don’t argue with your parent; instead change the subject. A few minutes later, your loved one won’t remember what the fuss was about. This really works!
- Don’t try to shame or lecture your parent into doing what is best for them; distract, divert attention and do what has to be done.
- Avoid the word remember. Instead, reminisce with your loved one, remind and reassure.
- Physical touch is important. Hug often.
- Monitor medications! A person with dementia may take too much or too little, so you need to dispense the meds.
- Get rid of clutter. Simplify even family photos. Your loved one’s brain can no longer handle stimulation overload.
- Make spiritual input a priority. Worship together, read Scripture; sing! Even if you can’t carry a tune, the words of the songs can still lift a heart.
- Take care of yourself. You can only do so much. There is no shame in asking for help.
- Pray—for strength and patience, but also prayers of thankfulness to God for the opportunity to bless your parent.
The Spirit Remains
Despite her journey through dementia, my mom never forgot her love for Jesus. Earlier in life, she played the piano in our local church, a small congregation of about 80 people. She could read music, but she preferred playing by ear—hearing a tune and then picking it out on the keyboard. During her final months in a nursing home, we still sang “Amazing Grace,” “Victory in Jesus” and other favorites. Without reading the music, Mom played every song by memory, and she sang every word along with us, often singing the harmony part. It was truly amazing to witness. Mom could barely remember what day it was, but she could still recall those old hymns by heart.
And when she prayed—watch out! It was a direct line to heaven.
Sure, I had my “Why me?” moments? More often, I wondered, Why her? I asked God repeatedly, “Why? Why must she suffer such indignity at this stage in her life?” Watching Mom’s daily demise evoked so many questions. Why didn’t the Lord just take her home? After such a robust life, it was almost a mockery to see her so frail.
The “why” questions pummeled my mind more than I cared to admit. Surely she couldn’t still be here suffering so she could learn something. I concluded that was still around for our benefit—for me, so I could learn something.
“Help me to understand the lesson, Lord,” I prayed. “Don’t let me miss whatever it is I’m supposed to learn from all this, at such horrendous expense to Mom.”
Shortly before she passed away, she squeezed my hand tightly. “I’m watching for Jesus,” she said. “Where is He? When is he coming for me?”
Her statements rattled me and knocked me off guard. I told her, “Well, you’ve been a trooper, Mom.”
She looked back at me almost impishly and said, “I have been a trooper, haven’t I?”
I chuckled and said, “Yes, you have. And Jesus loves you.”
Her parched lips formed a soft grin. “Yes, Jesus loves me. And I love Him.” Then she added quietly, “Hallelujah.”
Before I left, I reminded Mom that Jesus could come for us at any time. She smiled weakly and said, “Oh, glory!” louder than the whisper with which she had been speaking. “What a day that will be! I’m ready to go, but I’m going to miss you and the other kids,” she whispered and then paused, and I guessed that she was trying to remember all our family members. “Don’t forget to thank the Lord for all the good times we’ve had together.”
“I’ll remember, Mom.”
It struck me that she had taught me how to live, and now she was teaching me how to die. I quickly left the room so she wouldn’t see me crying. It was hard to be sad when she was so ready to go.
If you are helping someone afflicted with dementia, don’t miss the spiritual opportunities. The Holy Spirit is still working in that person. As you span the emotional spectrum from funny to sad, to where your loved one is “there” only in fractions of his or her former self, you still have the responsibility to care for that person—and the opportunity to love him or her. By walking with your loved one into the world of dementia, you will find the realities of faith—your loved one’s and your own—to be tested and true.
Ken Abraham is a New York Times best-selling author, known for his collaborations with public figures such as former U.S. Attorney General John Ashcroft, astronaut Buzz Aldrin and minister Joel Osteen. He has more than 10 million books in print. His most recent, When Your Parent Becomes Your Child (Thomas Nelson), released in October.