Alzheimers caregiver offers perspective as stand-in CEO

By Divya Kumar EDITOR IN CHIEF
On May 21, 2012

Francine Shebell met with operating staff at the Byrd Alzheimers Institute on Friday from 9 a.m. to noon, looking through digital microscopes and listening to updates on their research. At noon she attended a monthly meeting with laboratory investigators.

The retired attorney usually spends her days at a slower pace, practicing yoga or visiting her husband, Peter. But Francines Friday was packed with back-to-back meetings and appointments from 9 to 5, working as the Byrd Institutes CEO for a day.

Francine won the day-long appointment with a $500 bid through an online auction, CEO for a Day, raising money for the institute. Though she doesnt have a background in medicine, Francine does posses a wealth of experience as an Alzheimers patients primary caregiver.

Shortly after she and her husband moved from New Jersey in 2006, Peter Shebell was diagnosed with Alzheimers at the Byrd Institute.

As a caregiver Francine has been through a lot and shes not alone.

Sixty-one percent of caregivers rate their state of emotional stress as being high or very high, according to the Alzheimers Associations 2012 report. Sixty-five percent of caregivers leave their jobs or must take time off or reduce hours.

To live with someone with Alzheimers 24/7, unless youve been through it, you cannot imagine, Francine said. Its really hard. Its not only the health of the Alzheimers patient that needs to be taken care of, but the caregivers too, because once they start taking care of the patient, they start getting sick, too. It really affects you emotionally and physically.

When the diagnosis came, Francine did everything she could to get her husband the best treatment, shuttling him between doctors appointments, searching for help.

I was traveling everywhere, she said. I took him to the Brain Gym. All my days were filled with taking him somewhere for that pie in the sky, that something that was going to work.

But as hard as she tried to fight it, the disease didnt go away.

Once, she said, when she went for a walk, she wrote a note on a large board in front of her husband so he wouldnt forget where she went. But she said Peter forgot where she put the note.

This is what they go through day in, day out, only progressively getting worse, she said.

Francine took up painting as an outlet of expresson after her husband was initially diagnosed with Alzheimers as an outlet for expression.

But as the disease progressed, Francine stopped painting as she found her role as a caregiver growing increasingly more demanding with few resources to turn to.

Last June, Francine admitted her husband to The Fountains in Boca Ciega, a full-time assisted living facility. She said she grapples with that decision every day, but ultimately made it to grant her husband dignity.

When he was home, all he did was sit on the couch, she said, fighting back tears. I never realized that when I took him places, he was under such stress. You dont realize that. I thought I could take him places and it would be great. You dont realize how (Alzheimer patients are) suffering. You want them to be a real person. I would fill in the ends of sentences, and I would fill in stories and I would fill in everything for him, because he was so smart and he was such a vibrant person.

Its very difficult, she said. Putting him in this assisted living facility gave him a life, but I always feel maybe I should have kept him at home. But I wasnt doing anything good for him. I suffer from tremendous guilt. I feel that he should really be home. But I know for him, the best thing is that he has dignity where he his. He has a life.

During her day at the Byrd Institute, Francine accompanied the centers full-time CEO, Dave Morgan. Morgan, who said he enjoyed having Francines company and perspective throughout the day, said Alzheimers is a disease that often leaves caretakers in a difficult position.

The worst thing about Alzheimers is that it doesnt go away, he said. Its still there and it keeps going on.

Morgan said Francines perspective was valuable for researchers to see while searching for a cure.

I think shes been very helpful, he said. Theres been several issues that shes had meaningful input on. Shes followed along with a lot of the challenging stuff that weve been throwing at her.

Since her husband has been at The Fountains, Francine said she has worked on piecing her life back together.

She found a walking group to walk with every morning. She has taken on painting again, and some of her art has been auctioned by the Byrd Institute in fundraisers. She is now looking for a small studio to rent for painting.

Francine said everyone has his or her own crosses to bear and said her struggle is no different from anyone elses.

Ive really been trying to get my life going, she said. Its been a long journey, and I guess my journey wont end until my husband goes to his great reward. It never ends. Youre constantly mourning. There are times you can see the old person. I still love him. Even when they dont know who you are, you just cant let them go. My friends tell me I have a problem with that, but Im just not willing to let him go.

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