When a loved one has Alzheimer’s or dementia
● By Lev
Journalist Marcella Peyre-Ferry has written a book about how to cope after a loved one has been diagnosed with Alzheimer's or dementia. The book is available on Amazon.com in paperback and Kindle versions.
By Steven Hoffman
After caring for her father, mother, and aunt while they all suffered from Alzheimer’s or dementia over a two-decade period, Marcella Peyre-Ferry wanted to share the lessons that she learned about how to cope while loved ones face daily struggles with these life-changing afflictions.
“I felt compelled to write my story down because it could help other people who are facing what I did,” she wrote in the book. “I am able to be frank and forthcoming with this book only because some time has gone by and I have been able to reconcile my feelings. There are still some stories that I am not able to tell because they are too upsetting.”
Peyre-Ferry, a resident of Elk Township, has spent the last 27 years writing for newspapers and magazines in Chester and Lancaster counties so it was natural for her to attempt to work through her emotions by writing her thoughts down on paper.
“Getting Past the Guilt—When a Loved One Has Alzheimer’s Dementia” might be only 77 pages long but it is overflowing with raw emotion as she candidly recounts her personal experiences handling the challenges that come with watching a loved one battle Alzheimer’s or dementia.
“When a loved one is suffering from Alzheimer’s or dementia, you may feel that you have lost them even though they are still physically healthy,” Peyre-Ferry explained. “The person you know and care for is slipping away day by day, leaving you to deal with a turmoil of emotions. This is a disease where you will hear people say that they lost the person long before they actually died.”
Peyre-Ferry’s father started showing signs of Alzheimer’s when he was in his mid-seventies. At first, the disease only hindered his regular routine, but his condition gradually grew worse. At that time, in the mid- to late-1980s, there were fewer people being diagnosed with Alzheimer’s, and there weren't as many resources for families.
Peyre-Ferry described her father as “a quiet kind of guy” who wasn’t the type of person to share concerns about his health. But as his condition worsened Peyre-Ferry, her husband, and two young children moved to a farm in Elk Township so that she could help her mother care for her ailing father.
The family didn’t really know what to expect from the illness, and there was no way to prepare for a beloved family member to suffer through the daily challenges that come with Alzheimer’s. He lost his ability to handle even simple tasks, like making a pot of coffee. There were times when he didn’t recognize his wife or daughter. The family did everything it could to keep him comfortable in his own home, but eventually he didn’t even realize that he was at home. He also suffered from ailments related to diabetes.
By the time he passed away at the age of 84 in 1994, Peyre-Ferry had a deeper understanding of what caregivers go through when a loved one suffers from Alzheimer’s.
But when it comes to that disease or dementia, every case is different. Peyre-Ferry’s aunt—her mother’s sister—suffered different symptoms as she aged. She had a hard time taking care of her own basic needs, including eating. At one point, she weighed less than 80 pounds. She had trouble driving, but still insisted on taking friends to their appointments.
After Peyre-Ferry's aunt suffered a medical emergency, doctors determined that she required constant care. The decision to put her in a nursing home was a grueling one for the family. Peyre-Ferry writes about how the decision was agonizing but necessary as the elderly woman benefited from the excellent care provided by the staff at the nursing home.
With her sister now in a nursing home, Peyre-Ferry’s mother—a very strong-willed woman—saw her own condition quickly deteriorate. She started showing signs of significant dementia in 2008, when she was 91.
“That changed her,” Peyre-Ferry said of her mother when she saw her sister in the nursing home. “There had been little things before that, but after that point she definitely got worse.”
One thing that Peyre-Ferry’s mother did was simply block out from her mind the fact that her sister was battling dementia and living in a nursing home.
Peyre-Ferry said that her mother was able to stay at home for about another year, but her condition reached a point where she was a danger to herself. By this time, the family had been dealing with the ramifications of Alzheimer’s or dementia for the better part of 15 years. They had been piling up the lessons, painful as they were. Peyre-Ferry said that those lessons helped, at least a little, as her mother faced some of the same ups and downs that her husband and sister had faced. The family made the decision that constant care was needed, and as fate would have it, Peyre-Ferry’s mother was able to be placed in the same nursing home as her aunt. They passed away within a year of each other.
The feelings of guilt and uncertainty persisted. Peyre-Ferry writes extensively about the need to overcome the guilt that a child can feel when they are put in a position to make difficult decisions about a parent's health care. Writing the book was challenging and painful at times as she revisited those memories of the last years of her parents’ lives. But she also found a level of understanding and comfort.
“It was kind of therapeutic to get it down on paper,” she explained.
By writing this book and sharing these experiences, Peyre-Ferry hopes to make it easier for others who are also going through similar situations. As people live longer lives, more and more families will face situations where loved ones are suffering from Alzheimer’s and dementia.
“It’s very widespread now,” Peyre-Ferry explained. “And when you have a loved one with Alzheimer’s or dementia, you might not talk about it. You don’t know what to say. You might not want to say anything that would embarrass the person. There can be a real feeling of guilt for the caregiver.”
Peyre-Ferry said that the book might also be useful for caretakers, family members, medical professionals and social services workers dealing with Alzheimer’s patients.
She said that one thing that she wished she had learned earlier in the ordeal was that she wasn’t alone in this—other families are also going through similar experiences. And sometimes simply talking with others who have lived through similar circumstances can help.
Peyre-Ferry emphasized, however, that each experience caring for a loved one with Alzheimer’s or dementia will be different.
“The experience is going to be very personal to you,” she explained. “There’s no way that you win with these diseases. You can only do your best.”
Toward the end of the book, Peyre-Ferry writes about some of the emotions that are felt after a loved one passes away. One of the more difficult duties is to make decisions about what to do with all the possessions that the loved one accumulated through the years. She ultimately decided to make this topic the subject of her second book. She hopes to have that book completed within the next few months.
Peyre-Ferry has a series of book-signings and appearances scheduled over the next few months. She will be doing a reading and book-signing on Thursday, July 31 at 6:30 p.m. at the Oxford Public Library. She has also been invited to do a talk at the Ware Presbyterian Village and will have a book-signing at the Hankin Branch Library, tentatively set for Oct. 21.
“Getting Past the Guilt-When a Loved One has Alzheimer’s Dementia” is available on Amazon.com in paperback and Kindle versions.