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Seniors blog

Alzheimer’s: A long journey for caregivers and sufferers alike
Tuesday, April 19, 2011 | Maria Bouselli

Little signs of Alzheimer's disease began to appear this past year. He would drift off into his own little world during dinner. He could not find his way back to the table after using the restroom while celebrating New Year’s Eve with my family. He would ask five times in a day when I was leaving for Chicago.

In early January it was confirmed - my grandpa Stanley Zuba has Alzheimer’s disease.

Since his diagnosis, I have been diligently researching the disease: the effects, the care that needs to come with it and the devastating realization that there is no cure.

My nana, Rose Marie Zuba, is my grandpa's caregiver and must deal with new issues every day. Although Grandpa has just been diagnosed and is very alert and aware, little things that he is unable to do now fall on Nana's shoulders for the first time in their fifty-five year marriage.

“I do it all - the taxes, making sure the car is inspected, things I never had to worry about I now have to do,” Nana said. She is also the main driver in the house after noticing her husband drifting into other lanes and almost going through stop signs.

Nana is completely responsible for making sure that Grandpa takes his medication and keeping him healthy. “I have to handle his pills,” she said. “And also if he gets a bad infection anywhere, that’s when he starts hallucinating. It’s just horrible - that’s the worst thing.”

Grandpa is the foundation of our family. We come from a modest background. My great grandfathers worked in the coal mines in Scranton, Pa. He started working when he was 14, picking tomatoes at the farm. He did not finish high school in order to work full time to support his family.

He decided that he did not want his fate to be the same as his parents - he was going to make a change. He went to the local grocery store, Giant Markets, every day until they agreed to hire him. He married my nana when they were still teenagers and promised her a better life.

He worked hard his whole life, starting his own local grocery store chain in the Poconos Mountains in Pennsylvania when he was just 29 years old. He took care of everything- finances, vacation plans, yard work and especially his five daughters and their families.

Now, it is time for his family to take care of him.

The Alzheimer’s Association 2011 Facts and Figures Report states that 5.4 million people have Alzheimer’s disease. It also estimates that there are approximately 14.9 million unpaid caregivers.

By 2050, these numbers are projected to double.

Janette Foley is the director of the Hartwell House in Chicago, which is a special care unit for people with Alzheimer’s and other forms of dementia. It hosts support groups for caregivers whose loved ones reside at the Hartwell House and also those still living at home.

Foley said caregivers could have difficulty living with someone who has dementia or Alzheimer’s, especially if it is just the two of them.

“Caregivers at home feel that they need to bring reality to the individual. It’s hard to redirect someone when you are one on one at home. It’s hard to maintain the fresh energy and creativity when you are at a loss yourself,” she said.

One of the devastating issues caregivers seem to face is when a loved one exclaims that he wants to go home. But he is already home.

“Current philosophy is that you agree and discuss the subject rather than get into an argument about it,” Foley said. “It can be very difficult; they may be remembering their childhood home, or that they may insist that they have to go home and have dinner with their mothers, when their mother has been gone for probably fifty years.”

“The saddest thing for me and the girls is that he was such a smart business man and now he sometimes has trouble figuring out how much tip to give or even giving the correct amount of money for a bill,” my nana said. “I don’t want him to feel bad- I make a joke about it.”

Even though my nana realizes the full effects of Alzheimer’s, she is content to know exactly what to expect.

“I would get very upset before, but when I found out exactly what he had, I thought to myself, ‘I can handle this,’” she said. “When you don’t know what’s going on, you’re a wreck. You feel at peace after the diagnosis.”

We can never know exactly what the future may hold, so we take it one day at a time. I am grateful every day for what he has given my family and me and I feel lucky to know such a kind-hearted, strong-willed man who has put his family above all else.

Maria is a neuroscience reporter for the Medill News Service. Click here to view her original post.

Tags   caregivers, family, healthadvocate, alzheimers, seniors


About This Blog

Welcome to the Caregiver’s PHR blog – your connection to health information management professionals and other caregivers managing the healthcare of a loved one. Caregivers can be more prepared for the unpredictable simply by keeping a record of their loved one’s personal health information to present to a healthcare provider when needed. As a caregiver, you can often become overwhelmed with the emotional and physical responsibilities involved in this commitment. Just tracking medications and doctors’ visits can seem nearly impossible at times. A personal health record can help ease your mind. We hope you will visit this blog often to interact with experts in the field to seek advice and tips for best practices in creating and maintaining your loved one’s personal health record and the most effective ways to use that information to play a more active role in their healthcare and simplify your life.

Blog Contributors

Marsha Dolan, Valerie Watzlaf, Cindy Boester, Heidi Shaffer, Julie Wolter, Margaret Hennings, Colleen Goethals, Vera Rulon, Leah Grebner, Robert Caban, Mynilma Olivera-Vazquez, Amanda Bushey, Margie Kelly, Donna DuLong, Sarah Dietze, Valisha McFarlane, Maria Kovell, Ted Eytan, Leann Reynolds, Laura Heuer, Kristin Stewart, Derek Allen, Chris Matthies, Margo Corbett, Craig Newmark, Sarah Buelterman, Skyler Tanner, Aniruddha Malpani, Joan Malling, Marilyn McFarlane, Megan Rooney, Patrick Rhone, Dr. Carrie Nelson, Maria Bouselli, Erin Jordan

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