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“Alzheimer’s is heartbreaking, but it is not hell.”

Dorothy Horne is a Longview, Texas, author and contributing columnist and blogger for the Longview News-Journal. Her husband, Byron, lives with Alzheimer's disease and is a resident at Buckner Westminster Place’s The Harbor. Her article below originally appeared in the Longview News-Journal.

We have enjoyed lots of good times since Byron moved into Buckner Westminster Place Memory Care in early July. The staff always tells me how sweet he is, and several of the women residents always tell me how handsome he is. I agree on both counts. (And ladies, I am watching.)

I visit Byron daily usually around lunch or dinner time so we can share a meal together. Unless he is taking a nap, he is always with other residents in the big common area. Some people are participating in activities and others are enjoying the camaraderie of just being in community. The staff is friendly, caring and fun. They know just how to minister to each resident according to their individual needs and personalities.

When Byron sees me, his eyes light up. He hugs me and tells me he loves me. I treasure the light and love in his eyes. It is his biggest and best gift, one I'll never forget. I find that our love during this season of life is different — simple, accepting, undemanding. As I write this I am startled to realize what I have just described is unconditional love — another glimpse of grace. The cares of the world don't seem to matter when we are together. And since I am no longer Byron's primary caregiver, we are able to spend more time enjoying each other as husband and wife again.

Now that the weather is not as hot, after we eat we like to walk across the Buckner campus to the trail that runs beside the peaceful lake and sparkling fountains. Walking and enjoying nature together is something we've always done, so to be able to continue to do this is a wonderful blessing.

If we don't go walking, we might go to Byron's room and put on a CD, like Elvis or the Beatles, and dance. Dancing is still one of his favorite activities and brings him such joy. He seems to return to his pre-Alzheimer's self while he's dancing. Even during times when the light is absent from his eyes, if I (or a staff member) asks him to dance, it returns.

While we are in his room I also ask him to play his guitar for me — another favorite activity that still brings Byron back to himself. Playing guitar remains his biggest passion, and how wonderful that he can still do it and share his gift with others. The residents and staff still enjoy having him play for them. There is not a day that goes by without him playing his guitar.

Often we play praise CDs, read Scripture and pray when we are in his room. He still receives great comfort from these spiritual practices.
Before I leave, I always play his favorite song, "In Christ Alone." (Months ago when he listened to this song play he told me, "I'm listening to what God has for me."). I still see the rapture in his eyes as he listens to it again. Afterwards, I help him get comfortable in his recliner so he can take a nap, or I take him back to the common area with the other residents. I tell him it's time for me to go, and he smiles and says, "Okay." It is both comforting and heartbreaking. I find that many times, I am experiencing joy and grief at the same time — a common theme for caregivers in this journey.

These past two weeks have been harder for me because Byron is declining more rapidly. It has triggered a fresh wave of grief and anxiety. I wonder again if I can endure it. I continue in the constant process of learning to let go and trust God. (I have figured out that I am never going to be done — another recent "Aha!" moment.)

I still inwardly recoil when I hear people say, "Alzheimer's is a horrid, living hell," or other words to that effect.

My two cents: Yes, living with Alzheimer's is very hard. But "horrid, living hell" or other similar words gives the disease too much power. That description makes it sound like God is nowhere to be found. Some may say it's just semantics, but to me it paints a picture of throwing up your hands and saying, "I give up. It's hopeless." In effect, you've just handed the ball to the other team and now they are going to run with it.

What about grace? What about faith and hope in God's provision?

Fellow caregivers, please don't hand over the ball.

We can choose to follow our feelings and give up, or we can choose to trust God's promise that he will be with us in our all of our heartbreak and devastation, even in Alzheimer's disease.

Alzheimer's is heartbreaking, but it is not hell.

Alzheimer's is devastating, but it is not hell.

Hell cannot be where God is. Hell can only be where God is not.

When we finally become still and quiet enough to listen, God will remind us, "My grace is sufficient for you, for my power is made perfect in weakness" (2 Corinthians 12:9).

"And now just as you trusted Christ to save you, trust him, too, for each day's problems; live in vital union with him … Let your lives overflow with joy and thanksgiving for all he has done" (Colossians 2:6,7).

Dorothy Horne's book, "Glimpses of Grace: Walking in Hope through Alzheimer's and Ordinary Days," is available in paperback or Kindle at amazon.com. Find her blog, Glimpses of Grace, at news-journal.com and dorothyhorne author.com.


Rowell Sargeant says:
So well written, so happy for your good times. Tears still flow so easily for me. Corrie is in a Memory facility in Edmond, OK. She does not play the piano, or sing or dance or walk without her walker, but her Spirit is well. She is as kind and sweet and beautiful as when we meet in 1965. We spend four to six hours a day together and I need to enjoy that time more than I do. Thank you!!
De Lynda Rousek says:
Hello I'm Cody Moore's Mom and I was a caregiver to a dear friend for 12 years its a awful disease, but we know God is in control and all I wanted to do those 12 years is make her laugh and talk to her in a normal fashion as long as I could. Praying for you and your husband !!! God Bless

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