NOTE: I would never intentionally invade my sister’s privacy. I am telling this with her permission. For her courage to allow me to share, I am extremely grateful. Thank you  — I love you, sis!

His name isn’t important, but he is. He’s a husband, father, son, uncle, brother, cousin, and brother-in-law. In fact, he’s my brother-in-law. I’ve watched as he romanced my sister, raised strong, independent daughters, became a member of our clan, lived as an outdoors man, cooked like a chef, and worked diligently at his chosen profession in the medical field. When my husband was my fiancée, my sister and her family came to spend some time getting to know my guy. I marveled at the instant connection between our two men, their similar humor, their mutual respect. They became friends – and family.

A few years ago, my brother-in-law began to forget things. Don’t we all? But for him, it was more than the norm. At one point, he lined up pictures on his dresser and every morning would go through the names of the ones in those pictures because he was determined to not forget those he loved. He knew that something was wrong and as was his character, he set out to “fix” it. The diagnosis of Early Onset Alzheimer’s ended his career a bit sooner than he had intended. And it changed life as we had known it for everyone who loves him.

This disease is a thief. To begin, it steals in small ways that are barely noticeable, it causes confusion, and frustration. As it continues to affect the mind, it steals recent memory, familiar behaviors, loved personality traits, and independence. In the later stages, it takes the ability to speak and be understood. The disease runs its course in 8 to 20 years, on average.

Years ago, I worked in nursing homes. We didn’t have a great deal of understanding of the disease at that time. To be honest, what I saw was the result of this unforgiving disease. One woman was loved and cared for, but insisted she was being held captive. She would become violent in her attempts to “escape” the prison. Another awoke every morning and dressed in a suit jacket with matching slacks, shoes, and purse. She wandered from room to room to room to conduct “business,” as she had done for years prior to becoming ill. The last, a mother; she waited daily for her daughters to visit, but didn’t recognize them when they did. All three of these ladies were amazing, gifted women. Yet, so much of their lives, their character, and their personality no longer existed.

Americans have gained an awareness of the disease due to the fact that many well-known people have suffered with the disease. The list includes musician Glenn Campbell, actor Charles Bronson, actress Rita Hayworth, author E.B. White, Denver Broncos owner, Pat Bowlin, and President Ronald Reagan. According to the Alzheimer’s Association, 500,000 Americans currently suffer with the disease. It normally strikes those over the age of 65, but early onset has been noted in adults in their 40s.

A few years ago, John and I, some of our kids, along with my sister and her husband drove from Colorado to Galveston, Texas to catch a cruise ship. We made amazing and treasured memories during those nine days. On the way home, we had stopped for the evening, my brother-in-law and I were watching a travel show on TV. The others were busy doing other things. The program showed some scenes from Europe when he looked at me and managed to break my heart with these words that are forever branded on my brain. He said, “You know, they tell I’ve been all around the world, but the hell of it is that I can’t remember any of it.”

My sister has responded to this curve ball with all of the strength and character that she has shown in every difficult situation during her life. She has arranged her life to become the caregiver her husband needs. She has worked to create thousands of memories that she and the rest of the family will treasure for years. The memories have been well documented in photo after photo. Their girls have stepped up to the plate as well. They’ve supported their mom and they continue to love their dad. One of them cooked with him once a month to refresh the memory of all the meals he had prepared. The other created a photo album showing the phases of his family – some he recalls, some he doesn’t. And yes, the rest of the family does what we are able to do. Mostly, all of us just love him.

We love his wife and daughters too. The knowledge of what is to come weighs on their minds and hearts, especially on my sister’s. My concern for them is that they will try to do too much. Because of their love for him, I fear that they will want to do everything and they may forget to take care of themselves. That has also become a job for the family and for their friends. We get to love, pray for, and take care of them.

Frankly, all of us get the blessing of caring for the caregivers – not only the caregivers of one who is experiencing a long-term illness, not only the caregivers who are in our own family, but all of the caregivers who are around us. What other caregivers should we notice? While there are many, allow me to suggest two. Stay-at-home moms who would love to have adult conversations and quiet time alone. When our oldest was born, a lady from our church called and asked if she could come over. I was exhausted and really didn’t want company, but I reluctantly said yes. She came into our apartment, hugged me, kissed my son, sat me down, brought me an iced tea to drink while I fed our son, and then she washed the dishes. When she finished, she held my son and sent me to bed. I napped for about an hour. It was desperately needed – and a tremendous blessing. Next, adult children caring for their elderly parents. The roles are reversed and that in itself creates tremendous stresses that we can help alleviate simply by listening and praying, taking in a prepared meal, running errands, and by loving them. Other caretakers are in our world and if we open our eyes, we will see them.

While each of these situations is difficult, I know personally about the struggles associated with Alzheimer’s because that’s where we are living. The heart breaking part of this particular disease is the sense of loss experienced by those who love the disease’s victim. We watch as he struggles, forgets, changes. Each of his losses is a loss for us as well. With every personality change, loss of strength, forgotten memory – his loved ones have also lost the opportunity to make that particular connection with him. It is a long, painfully slow good-bye. No matter what we think about this disease, the reality remains – we are saying good-bye – one memory, one ability, one day at a time.