A diagnosis of Alzheimer's disease can be devastating for the entire family. No one knows this more clearly than Pat Paterick, a retired licensed practical nurse (LPN) and daughter of the late Louise Poniatowski, who succumbed to Alzheimer's disease at the age of 89.
She recently offered words of hope and advice for family members dealing with Alzheimer's at Heritage Hill Senior Community in Weatherly. Dealing with any type of dementia is difficult, she acknowledged, stressing the need for family members to take care of themselves and seek out others to talk about their troubles.
"I refer to Alzheimer's disease as the disease from hell," she said bluntly. "You can get angry. You can get frustrated. It's OK to make mistakes. And it's OK to grieve."
Paterick's mother was suspected of having Alzheimer's at the age of 75. She noticed that her mother had been acting oddly for six to 12 months; her father, Leo Poniatowski, was also concerned about her behavior. By this point, when her doctor asked what season they were in, Louise was pretty confident but she thought it was winter when it was really summertime.
Because Paterick was a nurse and had years of experience working in hospitals and with the elderly, she was confident that her mother would be fine at home, and later in an assisted living community that offered basic care.
"I thought I knew it all. I thought that no one could take care of my parents better than I could," said Paterick. She was helped by her sister.
After years of wearing down their own health and energy while struggling to provide adequate care and support for her parents, she realized that this wasn't a job for just two dedicated daughters. First, she learned to depend more on her faith and the help of friends. As her mother's condition deteriorated, she then made the decision to move both parents into Heritage Hill, a senior community that specializes in residential care and memory impairment.
Many people were judgmental of her decision. If she was a nurse, why couldn't she care for her own parents? She stressed to audience members that no one understands the constant demands of caring for an Alzheimer's patient unless they've experienced it, and that often moving these patients to a place where they can receive more care is kinder for the entire family.
"When you're a caregiver, you can't give them options," said Paterick. "I said, 'Dad, we love you. Because we love you, we're placing you in Heritage Hill.'" Her father, by then in failing physical health, was supportive of her decision to move them into the senior community.
The decision would turn out to be a wise move for both Paterick and her parents. While her father passed away shortly after moving into the community, her mother lived for several years surrounded by constant care and nurses who understood her disease.
"She loved her family here," she added. "And I was a happier person, even though I was here to visit almost daily."
Paterick learned to deal with her mother's disease while still maintaining her own sense of self, and encouraged others to let go of their guilt surrounding their care of loved ones.
"As a caregiver, you have to have a sense of humor," she said. "It's OK to laugh. It's OK to take care of yourself. Rely on help. It's OK to go out to dinner, to go to the movies."
She also encouraged family members to remember that Alzheimer's first robs its victims of recent memories, but that memories from years ago may still be intact. Use these old memories to start a conversation, and encourage your loved one to share stories about their younger years. It's often a relief for both parties once they find a way to communicate again.
"The most important word to an Alzheimer's patient is love," she said, noting that while many advanced Alzheimer's patients don't enjoy being hugged, it is OK to gently touch their arm or hand to show affection.
Before breaking into smaller groups and discussing loved ones' conditions with audience members, Paterick shared a final story of having lunch with her parents at a nearby restaurant. While her mother's care team and many of the restaurant staff understood why her mother would act out and misbehave, she often noticed restaurant patrons making comments about her behavior. She would ignore them during the meal but then politely tell these patrons that her mother had Alzheimer's as they were leaving the restaurant.
"Maybe next time they see someone acting out, they won't be so quick to judge. It didn't hurt my mom, but it killed me to see this happening," she said.
Paterick noted that there are 4.5 million adults in the United States with Alzheimer's disease, and many scientists don't expect to find a cure until at least 2025. Until this time, the best thing caregivers can do is combine good care with patience, continue to care for themselves, and educate others about the disease.