Alzheimer’s Association National Early-Stage Advisor Linda Kaufman, 58, was diagnosed with early-onset Alzheimer’s in 2018. Here, she shares how she has approached her changing role during the holiday season.
Linda Kaufman has always loved the spirit of the holidays and celebrating with friends and family. While these gatherings can be draining, Linda understands the benefits of socializing and being around loved ones in order to keep a positive outlook. “It feels a bit bittersweet, because where there was once only joy, there are now added challenges,” she shares.
Facing diagnosis, shifting responsibilities
Linda has lived all of her life in Connecticut, the oldest of three sisters raised outside of New Haven. Years before her 2018 Alzheimer’s diagnosis, she began seeing changes in how she was thinking, and performing daily tasks at work and at home. She had owned a successful law firm for over 25 years, but in her mid-to-late 40s, her desk was a mess, and her office became increasingly disorganized. “I expressed how I was feeling to my doctor. I was asked about stressors in my life, lots of emotional questions, but no medical questions.”
Getting her diagnosis was difficult. After suffering a stroke and concussion at age 51, Linda called her doctor again. Even though she explained the signs that something was wrong even before her stroke, doctors were focused on her concussion, not her needs and requests. “My pain was not subsiding. I was not getting help. I wanted a referral for an MRI. But they were very blasé and kept telling me to give it time.” Meanwhile, Linda’s cognition continued to decline. After she was told by two doctors to “just be patient,” in 2018, “I got all new doctors, and they ran all the tests.” Linda’s new doctor ordered a neuropsychological evaluation, MRI and a spinal tap, which confirmed her diagnosis of early-onset Alzheimer’s disease at the age of 52.
Linda is grateful to have the opportunity to celebrate this holiday season, and being included in celebrations has kept her joyous. “I was initially devastated by my diagnosis, but once I got over the shock of it I learned how to manage my thoughts and how to pull myself out of the negative and changed my life to be more positive. And through help, I have come to a new place.”
Today, she is happy to be a guest at someone else’s table. “I have accepted my limitations, which are enhanced during this busy season.” This includes no longer being able to cook. “I ended up burning my hand so many times that I ultimately decided I could not keep on. I would open the stove with a pot holder and then forget and stick my hand back in.”
The group mentality that occurs as people gather to celebrate can also be overwhelming. “I have difficulty concentrating on one conversation when several are happening simultaneously,” Linda says. Today, holiday shopping also over-stimulates her senses. Nevertheless, she does not let these things stop her from living her best holiday life. “You can spend your time being upset over the things you have no control over,” she says, “or you can accept these things and learn how to adapt what you love to still be happy.”
Linda wants to continue to live as independently as possible as she faces this disease. This includes recognizing tasks and activities she can no longer do on her own, and choosing to give them up. “It's more important for me to maintain my quality of life as I know it, rather than to be stubborn and stuck in the past,” she says. “I am trying to pull silver linings and happiness from everything I face during this journey.”
One of these silver linings is the work she has done with the Connecticut chapter of the Alzheimer’s Association and in her local support groups. “As someone living with this disease, I have a lot to offer others facing the same diagnosis. I can speak about my experience and answer questions in support groups I lead. If I can help one person, I have done something special.”
Focusing on holiday memories and traditions
Thanksgiving has always been Linda’s favorite holiday, one full of family traditions. “My family takes turns around the table sharing what they are thankful for. At this juncture in my life, I think back to happy times with my family, lots of food on the table, and us all enjoying each other’s company.”
Always thinking of others, including families impacted by the pandemic this holiday season, Linda sees parallels with her own journey. “It’s a time of year to be thankful for what we have, count our blessings and try to enjoy each moment. If I am feeling overwhelmed, I step away from the situation to rest my brain so that I can rejoin the party and be present.”
During this year’s celebrations of Hanukkah, Linda lit the menorah. “It is so beautiful to me, the significant meaning behind the holiday and the lighting and burning of the candles,” she says. “I had an extremely happy childhood, and now I am in a situation where I remember a lot more from the past. Those memories are precious to me and they enhance the holidays for me.”
Linda wants others living with this disease to know that they have control in how they approach their disease as well as live the best life they can. “We can't control the diagnosis, but we can control how we come to terms with it. The holidays are a time to focus on joy, not heartache. Remind yourself of this before you get together with loved ones. And if thoughts or moments occur that start to upset you, think back to the joy of past holidays, and look ahead to a new year of possibilities.”
About: Linda joined the National Early Stage Advisory Group to help advocate for people diagnosed with early-onset Alzheimer’s, and stresses the significance of future planning while you are able. “If there are decisions I can make for myself, I’d rather not wait until that’s impossible,” she shares. “I feel like I am living well with my diagnosis. I advocate for people like me living with early-onset and their unique challenges so they are able to get proper help, support and benefits as people under the age of 65.” Linda lives in Connecticut.
Photos: 1. Linda before Thanksgiving celebrations. 2. Linda with her daughter. 3. Linda decorating her Hanukkah cookie house.