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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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Lois “Lo Lo” Shoolbred
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What happens when the cash runs out?

Published: 2011-03-04 17:30:00
Updated: 2011-03-04 17:30:00

The question, as all good ones, cut straight to the chase: So, what happens when the cash runs out?

The question, posed by reporter Cullen Browder of WRAL-TV, covered a lot of ground in an interview he did last week with Lo Lo, my Mom who has Alzheimer’s, and me. The response involved several backdrops:

  • The costs to care for Lo Lo are staggering, eating away at her hard-earned, lifelong savings like piranhas. For example, her monthly pension and Social Security checks don’t even pay for half of the monthly rate for her to stay at Clare Bridge of Cary, a fine memory-care facility that currently charges $5,200. That figure does not include many other costly items such as insurance, prescriptions, doctor and hospital bills, clothes, food outside of the facility, hair and cosmetic needs, and many other miscellaneous expenses. In addition, each year for several months, as Lo Lo’s prescription coverage by Medicare lapses as it moves through the so-called doughnut hole, the price tag runs into thousands of dollars.
  • While Alzheimer’s is taking a tough toll on Lo Lo as it advances, she still often is happy and recognizes my family and me. Despite a number of vascular mini-strokes, a Pacemaker and several stints put in her, Lo Lo remains in good physical health at the age of 80.To our family, Lo Lo’s good physical condition is almost miraculous, as a couple of years ago she was not expected to live following a stroke. While Lo Lo once needed a wheelchair, she no longer ever uses one. Lo Lo also overcame the inability to swallow food, a condition she had about two years ago for two weeks after a stroke.
  • Unfortunately, unbeknownst to me at the time, Lo Lo and her husband Bob allowed her long-term-care insurance to lapse. Then, in January 2007, my family and I had to move Lo Lo from her home near Charleston, S.C., and her husband because of serious health concerns for her. In addition, I was told by medical, social services and law enforcement representatives that if my family did not put Lo Lo in a safer environment where she could not drive her car, the state of South Carolina would put her in adult protective services. Had the long-term care coverage stayed intact, we would not have had to dip deeply into her savings to pay for the high costs for Lo Lo to stay during the last four years at Clare Bridge of Cary and three other memory-care facilities where she previously lived.
  • Because Lo Lo’s income in retirement only partially covers the costs incurred, it is only a matter of time before her savings could be depleted. When that happens, it will be very challenging for me to be able to keep Lo Lo in the kind of high-quality facility where she is now.

My response to Cullen Browder’s question, after quickly thinking over Lo Lo’s plight, was:

“Every day Lo Lo is alive is a blessing for my family and me. This isn’t about money.”

What this situation is about is just hoping – and praying – that Lo Lo, as this unrelenting disease continues its damage, can remain happy as she can be.

Still, my family and I are lucky. That’s because we at least can afford, for the time being, to keep Lo Lo in an excellent memory-care unit. Four years ago, as we struggled for weeks to try to find a good home for Lo Lo, my family and I discovered up close what a nightmare Alzheimer’s is for its victims – and the caregivers.

At night, when we were asleep, Lo Lo would wake my wife Denise and me nearly every hour. Lo Lo would turn on our lights in our room, looking scared, lost and alone. We would try to calm her down and put her back to bed. But it wasn’t long before she was up again, wandering through our house and calling our names.

During the days, Lo Lo would complain about wanting to go back home to Charleston, demanding her money and her car. These three ideas were like an endless loop in her mind. It was all that she could think about. Lo Lo would throw her luggage bags down the stairway, banging up the walls of our home, and try unsuccessfully to call a cab because she no longer was able to use the telephone.

We found a community center for Lo Lo in north Raleigh but that did not work. Lo Lo was not happy there either. Then, finally after weeks on intense research and searching, we found an independent living facility in the Crabtree Valley area. But Lo Lo, along the way, had developed a urinary tract infection that has not been detected and she became hostile with some of the other residents, resulting in her having to be transferred to UNC Hospitals geriatric psychiatric ward for several weeks, a move that she has had to repeat a couple of more times in the past four years. Since then, she has been in other facilities with similar occurrences.

The first summer Lo Lo was in Raleigh, we took her with us to Emerald Island for a week’s vacation. But that only lasted a day for Lo Lo, as she never could relax in the unfamiliar beach surroundings. We had to take her back to her memory-care unit.

Like so many people, our family knows what it is like to live with Alzheimer’s. And my heart goes out to so many people who, particularly because of financial challenges, do not have the option of being able to put their loved ones in memory-care facilities.
 

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I feel for this family. My mother is 93 years of age, and lives in our home with my daughter, my wife and me (we are in our early 50's). My mother experiences similar problems without the nighttime sleep problems and for that we are very thankful. Besides the Alzheimers, she is blind, and incontinent, so she wears diapers and every room in our house looks like a bathroom to her. This is the worst disease I have ever been involved with. My father who is 90 offers little help, and my two older brothers haven't even visited or spoken to my mother in over 3 years, so they have been of no help. I pray that Lo Lo's family works together, because without help, this disease is overwhelming and to the caregivers. I love my mom, and I promised her I would take care of her, and I'm glad to see someone else stepping up and doing the right thing. May god bless you and your family!

To this family: how refreshing to see a family who keeps their elderly mom close by and yet, are willing to share with us the frustrations, challenges and struggles of aging with the physical/mental deterioration none of us really choose to talk about. It's too painful and overwhelming. I bet she was a good momma in her day. You have set a new standard in commitment, love and care for your elderly mom. We all take note. One day I hope to witness y'all receive your eternal reward for such responsible character and moral substance. You are a sterling example for us all.

Thanks to WRAL for a community service in educating us all in planning more wisely so we might better provide for our families and ourselves.

This story is one that will become more and more common as people live longer. My mother lived with me for 9 years after being diagnosed with Alzheimer's. It was a long sad journey watching my once dynamic,intelligent,loving mother become hostile, confused and paranoid.Fortunately I was able to quit my job and care for her myself. With the help of a wonderful doctor ( not easy to find) and some caring sitters I was able to keep her in my house until she died last year. I am 61 and I do not look at old age with rose colored glasses,long-term-care insurance is expensive and my husband and I cannot afford it.I wish only the best for LoLo and her family. Her son is a good man and I know how frustrating it is to be in his situation.He is shedding light on a scary problem that a lot of us will face.

I'm really sorry to hear about your mothers disease. A friend of my moms had this disease and it was really awful. He got where he didn't talk he would walk around the house all day and when he would sit down he would pop back up and start walking again. I'm glad to see a child take care of their parent, and their financial things as well. It takes a special person to do what you do. I read how she kept you and your wife up and that can be tough. Some spouses would be like i can't take this but it's great that shes there to help. Hope everything goes well and you can get everything straightened out and with gas prices going up i know its getting expensive. She looks like a very sweet lady :).

There’s a new type of long-term care policy that can protect your assets from Medicaid even after the policy runs out of benefits.

These government-approved policies are like a traditional long-term care policy “on steroids”.

Here’s an explanation of how these policies work:

http://bit.ly/How-Partnership-Policies-Protect-Assets

Scott

My work happens to take me into these LTC facilities. The management is only concerned with cost and do not hire or try to keep the best staff. Good staff are run off from overwork and underpayment. There is no way the number assigned to a unit can take care of all the residents. Many times state regulations regarding the number of staff to residents are ignored due to people quitting and not showing up. It is a huge mess and horrible situation. I suggest visiting at night when they do not expect you to come to see it for yourself.

Long term care insurance is extremely important....and it's going to get very expensive in the future so it's best to get it now. I'm 37 and getting a policy now.

My heart continues to go out to Lo Lo and her family. I have been down that road. It is tough and every day with her is special. My mother died of this horrible disease. I continue to follow Lo Lo's story. Good luck to the family - just love her and hold her every chance you can.

My husband's grandfather remarried and a couple of years ago he was diagonsed with Alzheimer's. Well, moving forward the new wife now wants to put him in a home (which his children and grandchildren are totally against). I feel so sorry for my husband's grandfather because I feel no one really has his best interest at heart. His two daughters have said they would take care of him, but I doubt his wife will agree to it. It's a whole lot more to the (our) story, but it's wonderful that your family could come together to make a decision about what was best for your mom.

It's sad that no one seems to be interested enough in Lo Lo's plight to even comment. I take care of my Mother and it's hard. I am tired but know that if I don't take care of her, no one else will. I can't put her in a nursing home because I'm aware of the care she will get there. Even the best, is not good enough.

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