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Lois "Lo Lo" Shoolbred looks at her son, Dave Simpson.

Life with Lo Lo

Dave Simpson shares his stories and struggles of watching his mother, Lois "Lo Lo" Shoolbred, live with Alzheimer's. Lo Lo lives in Cary at an Alzheimer's and dementia care community.

 

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Dave Simpson and his mother Lois "Lo Lo" Shoolbred
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Family shares the positive despite Alzheimer's diagnosis

Published: 2010-12-24 16:02:00
Updated: 2010-12-24 19:14:21

Inside the simple, gold-colored box, wrapped in cobalt-blue tissue paper, was the perfect Christmas gift.

“Do you like it?” asked Lo Lo, my mom, who has Alzheimer’s.

Before answering, I looked around at about 30 friends and family members who were visiting the 42 residents the other night at Clare Bridge memory care unit in Cary. It was the Family Holiday Celebration and there was a magical feeling of fellowship and song.

The lobby area of the building was decked out with a big Christmas tree and festive decorations. There was hot apple cider, hot chocolate and caramel apple nut coffee with a variety of desserts. There also were carolers -- The Beach Bunnies, a group of friends who have traveled to the beach together for years and came to support a dear friend, Jackie Marshall, a resident at Clare Bridge.

As the piano player began “Jingle Bells,” I saw Gwen, a friend of mine, talk quietly to her mother, another resident. Another friend sat with his arm around his wife, who lives at Clare Bridge and, at age 65, has lost much of her ability to comprehend words and communicate.

I turned back to Lo Lo to answer her question.

In her hands, nestled in the open tissue paper, was a marbled and sparkling Christmas ornament that the Clare Bridge staff had helped each resident decorate. The ornament, in Lo Lo’s handwriting, read:

“Lois 2010.”

I smiled at my mom, 80, and said: “I love it Lo Lo!”

Then, one of Lo Lo’s resident friends, Bobby, a World War II veteran, walked behind Lo Lo and put his hands on her shoulders as she sat. He winked at me and said: "She’s a good 'un."

I couldn’t help but thinking next of some wise words from one of my daughters, Maggie. She sometimes reminds me not to dwell on the negative aspects of Alzheimer’s. Instead, she says, it’s important to focus on the fact that the victims also often are having fun even though they may not be living in the moment.

Maggie should know. A graduate student at N.C. State University, she is majoring in social work and spends part of her time working in a memory care facility in Raleigh. She also is an intern at a recovery and rehabilitation facility in Raleigh for homeless people with alcohol and drug dependency.

Below is what Maggie offered up in an e-mail to me after I wrote the first blog for WRAL last month.

Blog: Life with Lo Lo

My blogs are accompanying the “Life with Lo Lo” stories being reported by WRAL's Cullen Browder. “Sun-downing,” a phrase Maggie uses in her e-mail, refers to the behavioral changes that Lo Lo sometimes experiences – that is, her mood can become more negative at night.

She wrote:

I enjoyed reading your blog. I think it will be therapeutic for you, and maybe if you get responses, you will get some comfort talking to other children of parents with dementia and/or Alzheimer’s.

I realized after talking to Cullen yesterday that I did not always call Lo Lo “Lo Lo."  I used to call her “Grandma.” It was only recently that I started calling her Lo Lo, I think after her memory starting failing her.

It's like Lo Lo is a different person from the grandmother I knew growing up. And I am okay with that. That thought is comforting to me. And better to focus on the fact that she is happy and healthy, and not on the negative. She doesn't know she has Alzheimer’s.

I feel an overwhelming sense of sadness from your blog and that makes me sad. Lo Lo lived a wonderful long life, and she is in good hands. Focusing on the negative won't do anything good. You have to just smile and laugh, and realize your loved one is not the same person he or she is today.

I work with 35 people with Alzheimer’s every day. And yes, they are nuts sometimes, but they laugh and are happy. Most of the time. Sun-downing is so true, but it’s a small fraction of the day.

I don't know if any of this is any help, but I do hope these blogs and the WRAL News stories are therapeutic for you and will give you some peace – and help others.

Wise words indeed.

And, in these yuletide times especially, we, the Simpsons, are very thankful that Lo Lo, despite her many mini-strokes, remains healthy, often is happy and still recognizes who we are.

In addition, we are very thankful for the excellent work of Cullen Browder and the WRAL team.

They are helping to spotlight, through the “Life with Lo Lo” series, the wide-ranging aspects of what it is like for the victims, caregivers and the many others who are living with this terrible disease – and how to help.

We would be remiss if we did not include in our thanks the patience and fine work of news photographer Greg Clark, Web news editor Kelly Hinchcliffe and co-anchors David Crabtree and Pam Saulsby.

We cannot say enough about what we think is a great staff at Clare Bridge, as well as other memory care facilities, in their efforts to provide shelters in these Alzheimer’s storms.

Finally, we are equally very thankful for the hundreds of contacts, stories and input many of you in the Triangle community have offered to all of us through the “Life with Lo Lo” efforts. Please keep it coming. Happy holidays friends!

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My heart breaks every time I read the stories of Lo Lo and others suffering from theis terrible disease. I can so relate to your situation. My mother died of AZ almost two years ago and I miss her terribly. Your daughter is right enjoy every minute. Live in the moment. You are very fortunate that she still recognizes you. I will be thinking of you and your family and Lo Lo's caregivers and look forward to the next update.

My Mom is in the beginning stages and I do not know really what to expect but, am preparing for the worst and hoping for the best. I read your blogs "all the time" in hopes I will learn rather than be caught by surprise. We really (5 siblings) aren't sure what to do about her yet, she lives alone but in the next few weeks we will change all that, not sure of how,where yet.

My grandmother had dementia and it often saddened my father. She always recognized him but she mentally lived in another time. She always recognized him as a little boy. She would light up when she saw him, tell him she was glad he was home from school and would then have some reason his father and sister were absent. They were either still at school or work. In reality, they both passed before my grandmother. This deeply bothered my father but it occurred to me that my grandmother seemed very happy. She didn’t live in reality, that her husband and daughter preceded her in death, that she lived in a home and that she had dementia. She seemed very happy to be living back in the 1940s when she was young, happily married with her small children still at home. Once he realized that she did seem truly happy I think he realized that she wasn’t trapped in a mental hell. Instead she had gone to a very happy time in her life and that was reality for her.

I met Lois when she was a resident at Morningside. My friend, who also lives there, introduced her to me. She was so pretty and so gentle a soul, but was suffering from such fear. I asked her what she was afraid of and she said she didn't know. There were three other ladies there and I asked her if I could pray that she would have peace, she was very pleased at that, and we all held hands and prayed. I never saw her so agitated again. We always visited when I was there and I love her; cannot tell you how pleased I was to see her in her new surroundings, and at home with those who love her. Thanks for the story.

I have been intrigued with LoLo's story. My father passed away in July of 2010. He had not known who I was for years before his passing. It was heartbreaking at first, but one visit with Daddy healed the hurt. During that visit Daddy told me he was very confused about who I was. He said "I don't know who you are, but I know I love you better than my own life. It makes no sense to me." The disease had taken so much from my dad but not his love for his family. Daddy knowing my name and where I fit into his life was not important to me anymore. I had what I needed, his unconditional love. I enjoyed my time with my daddy until the end, in many ways those memories are the most precious.

I'm just starting to follow this. My grandmother has some form of dementia, but has remained fairly lucid until a fall she had on Christmas eve. She know longer knows where she is and seems to be confused and agitated all the time. She knows who we are, but doesn't rember details (I have 2 kids, she keeps saying I have 3, little things like that). Up until now she had lived by herself, now we're going to have to put her in some sort of assisted living facility. Its hard to watch such an independent woman get to the point where she can't do for herself. My prayers go out to Lo Lo's family.

You do have to look for the positive every day. I called my dad on Christmas evening, same time as I always call...6:30. It's after dinner and before the home health nurse comes to the facility to get him ready for bed. He was suprisingly coherant. He actually remembered what he had for lunch at my sister's and then joining his friends in the dining room at the asst living center for the evening's meal. He knew I had gotten him a gift but without me reminding him what it was, he thought it was a blanket. But once I told him it was pj's, he remembered that my sister had taken all the pins out and had hung them in his closet. He remembered speaking to his two son's that day as well.

It was a wonderful phone call and probably one of my best Christmas gifts...just to have his memory be semi on track for that day.

I wonder what it is like for her when she reads these blogs and can't remember the events. This is a weird illness, hopefully they will be able to help these people one day.

Alzheimer’s is a terrible thing to have a love one go through. My mom has it and the changes can catch you off guard. I fixed her a photo albumn with all of the family pics and we look at it a lot to keep her remembering us. The other day she had the nurse call my brother and left a message, "This is your aunt, call me." It breaks our heart!

Just know that there are so many other families going through the same thing and your blogs help me in knowing that we are not alone.

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