Dementia is hard. We often feel alone in the journey even when we know thousands of others are on the same path. I want my path to cross with theirs. It’s so easy to rejoice when others are rejoicing – it’s much harder to mourn with those who mourn. So, we acknowledge the pain of others politely, but would rather not get involved in it. Grief is messy, but there is strength – even power – in mourning together. As difficult as dementia is, faith in the God who is Hope means we are not hopeless. Faith in Jesus means Mama and I have forever – this nasty now and now isn’t the end. We have forever. That’s the confidence that helps me when she forgets my name. I believe God wired us to be impacted by stories – His and each other’s. Telling what we’re living through with faith and honesty is one way I let the my corner of the world see that Christ is in me. I’d like to say writing about this journey is an unselfish act. That wouldn’t be 100% true. I also write to heal the wounds in my own heart.
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A little over three years ago I knew we were in trouble. After two measurable strokes, a few of what the doctors called “micro-strokes,” Mom started to change.
Being me, I did two things: I prayed I was wrong and postponed being right. She did the same. Together we wrapped denial tightly around us for as long as we could.
One day she called and said, “Joy, please come over. We have to talk about what’s wrong with me.”
The tears in her voice got to me more than her words. I have a tender-hearted mama, but she was never one to complain about her own health losses. I was shaking physically and shaken in my soul. Her words shattered the cloud of denial we snuggled into.
When I got there, she was sitting in her favorite chair, waiting. For something, but for a second she wasn’t sure what or why I was there. At that moment, I caught a glimpse of our future. After a tiny prompt from me, she was able to recall what she wanted to say. She warned me it was going to be hard and that I wasn’t going to like it. I promised her I was ready to listen. And I was until she said the word I couldn’t. Dementia. She saw the resistance in my eyes and pleaded, “Please, Joy. Face this with me.”
I choked out, “Okay, Mama. I will.”
She talked and asked questions like, “What will you do with me?” And, “Can I stay home?” I promised her that Dad, and I would do everything we could to take care of her at home for as long as possible. Finally, she asked the question that mattered most to her, “Will you still love me? Will your dad and brother still love me?”
My words came with a gush of tears. “Mama, we love you the way you love us. Forever. Nothing – not even dementia will change that.”
Through her own tears she asked, “But what if I forget that I love you?”
The truth of her concern dawned bright in my mind. She was more worried about what her dementia would do to me, Daddy, my brother, and our family than what we both knew it was going to do to her.
After taking a few minutes to mourn together, Mama asked me to pray for us. As I lifted her and our family to the Father, and prayed the hardest words I have ever said, “thy will be done,” it happened. Comfort we could not explain away washed over both of us. The kind of comfort Jesus spoke about in the Sermon on the Mount. We felt consoled, encouraged, and strengthened by God.
“Blessed are those who mourn, for they will be comforted.” Matthew 5:4 (NIV)
She asked me to read from the Bible to her. The page fell open to Psalm 27 – her favorite. Surrounded by the peace that passes all understanding, I read His Words to her with renewed faith.
When I read verse 14, which says, “Wait for the Lord; be strong and take heart and wait for the Lord.” Mama said, “Amen.”
He was there. He knew. He heard our prayers. And we knew all this to be true.
Even though the truth was harsh, we were also relieved we were no longer wearing the robes of denial.
These days, Daddy takes care of Mama at home and I give him a break a few times a week. We’ve developed a rhythm that works for all of us.
As dementia steals Mama away from us, we miss who she was while we love who she is. That’s God helping us do the impossible. There are days when we are weak and want to give up, but He who is strong gives us the strength keep our promises to her. We’re not driven an obligation, but we are motivated by love.
We have hard days. We grieve. We struggle. We’re frustrated. But in all of these things we believe that even in the muddled, merciless mess that is dementia, God’s Word is true. We really can do all this through Him who gives us strength. (Philippians 4:13)
These Scriptures are not worn-out Christian clichés. They are the powerful, trustworthy, compassionate words of God.
If you have a loved one suffering with dementia you know it is devastating, draining, and discouraging. Some of our days are murky and feels like we’re walking through knee deep mud while we wonder why. God hasn’t answered that cry of my heart, but I’m are trusting that He will keep His Word, and it will all make sense someday – when we see Him face to face.
“For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. And now these three remain: faith, hope and love. But the greatest of these is love.” (1 Corinthians 13:12-13)
On this Mother’s Day I will thank God for who Mama was once was and for who she is now. Because as long as God gives her breath, He has a purpose for her life this side of heaven and I don’t want to miss what He’s doing in me through her. I will celebrate her. Even now. Especially now.
Who is Joy DeKok?
Joy started writing as a little girl. She carries a large purse so she can take her journal and an assortment of pens with her in case a moment to jot comes along. Joy and her husband live on thirty-five acres of woods and field in Minnesota between Rochester and Pine Island. She’s been married to Jon for thirty-plus years. They enjoy their many nieces and nephews. Their dogs, Sophie and Tucker, keep them company when they explore the land riding their John Deere Gator or while watching the many birds that visit their feeders. Joy enjoys time with her family, holding hands with her husband, lunch with friends, hot coffee, reading, bird watching, personal Bible study, and amateur photography. She has nine books in print and including her first general audience (suspense) novel (the first in The Northern Lights Series) featuring main character, Olivia Morgan. Faith is a vital part of Joy’s life. When she was sixteen, Joy asked God to find her and He did. Although most of her books fit the Christian market, Between the Lies is where Joy proves she is a Christian who writes rather than a Christian writer.
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