Alzheimer’s – In Her Very Own Words
by A. Musante; http: //www. annalsoflongtermcare. com; 8/27/13
Oftentimes, Kris Bakowski just can’t find the right phrases to express herself. It’s frustrating, she says, when she struggles to follow a conversation or the plot of a film, when she can’t remember her cat’s name, or when she forgets how to turn on the washing machine. But these are simply distractions she has placed with. Kris is most worried about forgetting her past and the family memories that have yet to be made— graduations, weddings, first steps. That’s exactly why—at the age of 46, soon after receiving a prognosis of early onset Alzheimer’s condition—Kris began maintaining an online journal. Now at the age of 57, Kris continues to track her day-to-day existence with Alzheimer’s on her blog, titled Creating Memories.
Kris’s son, Alan, proposed she start the site as a means of keeping in touch with her family in the Midwest. “After I was diagnosed, when my family would call and inquire how I was doing, I would simply say, ‘OK’ because I didn’t want to go through everything every time someone would telephone, ” states Kris, who currently lives in Georgia. “By blogging about my experiences they could keep up to date with what was happening to me personally and exactly what we as a family had been going through ”
The blog eventually evolved into Kris’s diary and picture album, which she often rereads to help her remember her family and friends and significant occasions, which include the good times and the “meltdowns,” as she says. Kris is the very first one to acknowledge that she rambles, and her posts don’t often make the most sense. This is particularly disconcerting for Kris because conversation and organization were once as instinctual to her as inhaling and exhaling. Kris recently worked as a television news reporter and held jobs in public relations, advertising and marketing, and promoting. At the time of her diagnosis in 2002, she was working as a marketing and theater director of a convention center and performing arts location in Georgia. Her determination to leave the workplace in 2004 was very tough. “Many things played into that determination, but the final component was one evening when we were having a show and I questioned my capacity to get every person out of the building in case of an unexpected emergency,” she says. “I wasn’t sure that I was capable of doing that and I thought that would place our people in a harmful situation. I likewise had problems concentrating and multitasking. My career was very demanding, high-profile, and required a whole lot of working hours. Alzheimer’s symptoms tend to get more intense when you are stressed and fatigued, so that was going against me all the time.”
In spite of all of this, Kris says she has “the simple part,” while her family has “the tough part.” Kris remembers the time her Alzheimer’s was diagnosed; although it was difficult to hear her physician utter the words, she was allayed. “Relieved, that I wasn’t insane and that there was a name to precisely what I had. My husband compared it to us being on the Titanic, with he and my son surviving and I didn’t. My son likened it to me being on death row and being not guilty of my offense. Quite a comparison, right? My son’s take on this now is that we need to look at it as 'an obstacle in our life' and not look at it as the ending of my your life. Comparable to if you break your leg, you put on a cast, use crutches, or a wheelchair to get about—it’s an impediment to the normal manner of life. So, that is the way we have approached it.”
Alzheimer’s has interfered with Kris’s balance and concentration, making it difficult or sometimes not possible to continue undertaking the things she enjoys, including watching videos, doing some fishing, and playing tennis and golf. But she and her spouse, Ralph, have found creative answers for dealing with these confines. “Generally there is very little that I watch on TV, but my husband records many of those shows so I can go back and look at them if I forget something. It also helps to be able to avoid the advertisements, which interrupt my train of thought on the show,” she says. “I have had to stop playing tennis [competitively], but I try to go out and strike the tennis ball sometimes with my spouse just for ‘old time’s sake’ and as long as it is slow pace and for fun and there is no one else on the other courts, I am fine.”
Over the previous number of years, the blog has advanced into a device for educating other people about Alzheimer’s and correcting many of the myths regarding the disorder. “After my diagnosis, I was astonished at the stigma associated with the condition and how folks reacted to me,” Kris states. “It was like I had the plague—people didn’t wish to be close to me as though they believed they were going to ‘catch it.’ They didn’t learn how to converse to me— although 5 minutes before they knew I had it they talked to me like a normal person—and after that, they either spoke to me in a real gentle tone of voice just like I was ill, or they spoke to my husband instead of me. They immediately believed that I could not think for myself at that point. It is frequently said that Alzheimer’s is a ‘lonesome disease’ and that it is, for the reason that people become disengaged. Friends I believed were friends were not friends. My real friends wanted to know exactly what they might do help and they wanted to learn more concerning it. Others simply seemed to see this big “A” on my forehead and stayed at a distance. That’s where my website helped ”
When determining what to write about in her blog, Kris says she tries to avoid the depressing tone depicted in other blogs authored by people with Alzheimer’s or their caregivers, while staying sincere to her experiences. “We laugh a great deal in our house—regarding ridiculous things I do and say to typical everyday things, ” she says. “So, I determined those are the things I should write about.”
Kris grew to become an energetic advocate for Alzheimer’s research and education about a year after the diagnosis was made. She started locally by presenting talks through the Alzheimer’s Association in Georgia. “I wasn’t real sure about it in the beginning, as I didn’t really want this to be about me. I wanted it to be about the disease,” she says. “Needless to say, people were more interested in me and my story as they weren’t accustomed to witnessing an individual so young have Alzheimer’s. So I started speaking more as I realized that people didn’t understand a lot about Alzheimer’s mainly because we didn’t communicate about it. ” Kris continues to speak locally and has also branched out to speak on statewide and national stages. She also participates in the national Walk to End Alzheimer’s, the major fundraising event of the Alzheimer’s Association, and she routinely raises about $10, 000 every year.
“Alzheimer’s exhibits itself differently in each and every person,” she affirms. “There is a saying that goes, ‘If you know a single person with Alzheimer’s, you know one person with Alzheimer’ s.’ We all advance at a distinct rate, so what might work for me doesn’t work for someone else. That is why knowledge is so critical.”
Kris states that one of the most significant things she has discovered is how to obtain help. “I came to the realization that my friends didn’t know how to assist me unless I explained to them precisely what I wanted,” she says. “For example, I can not make change at a store or a cafe, so I ask my friends to take my cash and pay the bill. That was a hard thing to ask for, but my friends automatically do this for me now. My spouse can usually tell when I need help with anything before I inquire. Sometimes I want to attempt to do something by myself with a person watching in the event that I do require help, but I need to know that at least I tried, and sometimes I do succeed.”
The support of her friends and family members, taking prescription medication, making lists, and composing in the blog, of course, have all made the condition controllable for now, but looking ahead, Kris fears becoming a burden on her family members as the illness advances and is concerned that her son could inherit the disorder. Although there is no acknowledged family history of Alzheimer’s, Kris carries one of the genes associated with the disease and she thinks her parents, who both died young in their early 60s, had symptoms of it.
“What I find hard is that I feel guilty about it with regards to my family members,” she says. “I’m not certain if guilty is the right word, but I don't like that they are being forced to cope with this. A mother doesn’t want to burden her loved ones, and that is what I am or will become.”
On August 16, 2013, Kris submitted an entry setting out her “Bucket List.” Actually, Kris has a pair of of them—a number of items she plans to make happen, and a list of things she wishes to see someday but knows are beyond her control. On the to-do list, she writes skydiving, going to Italy, and making a difference in somebody else’s life. On the wish list, she writes making a hole-in-one, being a grandparent, and finding a remedy for Alzheimer’s.