From Deseret News archives:

Generations of tears

Published: Wednesday, July 12, 2006 12:13 p.m. MDT
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In August 1996: John is anxious and agitated. For one week, he sleeps all the time and lacks the energy to walk to the corner and get on a bus. The next week, he can't be left alone. Lael gives notice at her second job but still must finish out the week. When they look at an adult day-care center, John says he'd kill himself first. Instead, he calls friends and acquaintances until he finds someone who will let him stay with them during the day.

The doctor arranges to hospitalize him for a few days to adjust his medications. When he goes back home, he sleeps most of the time. Lael worries that he's too drugged, but she's relieved to know where he is.

He still talks about taking exotic trips. Lael just lets him dream.

By now, she writes, Amy is falling apart.

"Robert is really concerned about her behavior with the kids. In fact, she will be hospitalized before the day is out, either with or without her cooperation. It is so sad. It gives me a new outlook on how John and Bob's mother must have been with them. Amy loves those children dearly, but at the same time she is so mean and talks so mean to them. I just don't know where it all will end. In fact, there is no end in sight. It's pretty discouraging and hopeless — and will be perpetuated with yet another generation.

"I still remember when life was normal but have to think harder now about that than I used to."

· · · · ·

Story continues below
A few days later, on their 35th anniversary, John ordained his baby, Danny, as an elder in the LDS Church. He needed help with the wording, but as the family gathered near — Scott and his daughter from Phoenix, Amy and her family from Orem, Lael's mother from Payson — Lael felt a spirit move through the room and around the circle. She was comforted. In spite of everything, she felt, God held them in his hands.

Later that night, John fell twice. His speech was becoming more slurred. When she wrote to Bob and Judy, she told them she thought they were "just starting the bad part" of the disease.

By December 1996, Julie was beginning to fall a lot. But unlike Amy and John, she was content to sit. Her Huntington's "movement" showed up as flailing arms. John, on the other hand, appeared restless. He'd sit, then stand, then sit again.

Lael says a conversation with Amy, at that point, went something like this: "Amy asked me the other day if a color was her best friend. Then she asked why she was so unlovable ... . She wanted to know from me what my hopes and dreams were for her as she was growing up. I didn't have a good answer, so she asked what my mom's were for me. I didn't know, but I asked her what hers were for Rebecca. She didn't answer.

"She asked me to name three things that she would be worst at if she had to earn a living for herself. I told her that was negative, but rather she should think of three things she would be good at. She persisted, so I came up with three things: rocket scientist, landscaper and I can't remember the third.

Recent comments

This is a truly horrible disease and my heart goes out to these girls...

Gale | Oct. 9, 2008 at 9:51 p.m.

I hope you are planning to make your story into a book. Not only...

Kathy | July 12, 2008 at 7:10 p.m.

This story of the Bishop's is incredible. Just browsing to look up...

Debbie RN | Sept. 23, 2007 at 2:43 a.m.

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