I asked Jennifer Krychowecky what she gave up during her nine-year journey caring for her mother, Linda Krychowecky, who was diagnosed with Alzheimer’s disease at the age of 59. Her response was eye opening:
My boyfriend, my house, my social life, my career, my freedom… life as I knew it.
At just 30 years old, Jennifer, a stunning Magna Cum Laude undergraduate of The Wharton School of Business, was doing what most young women do at her age. She was following her dreams, achieving success in her financial career, living with a serious boyfriend and looking forward to a bright, exciting future. All of that changed when her mother was diagnosed with Alzheimer’s disease. Jennifer’s loving mother, always friendly, talkative and bubbly, had given her daughter an incredible upbringing, even after her father died when Jennifer was just 16. Linda Krychowecky stayed positive and worked very hard to keep her kids centered, healthy and financially cared for. Now, with Linda’s Alzheimer’s diagnosis, Jennifer knew there was no other option than to be there for her mom and give her the respect and care she deserved. “This is when my life substantially changed,” she told me.
I was in a relationship when my mom’s disease started progressing into more moderate stages. As my mom declined I found myself increasingly torn between two people, unable to give enough of myself to either. I was constantly running back and forth between the house I shared with my boyfriend and my mom’s house. It was no longer safe for my Mom to drive, or work, and I had to adjust my life. I did not have the heart to put my young mother, who had just celebrated her 63rd birthday, into an assisted living residence when it was a move she so firmly resisted.
Jennifer felt strongly that her mom’s life was already being cut short by this debilitating disease and did not want to take the things away from her mom that still brought her comfort and happiness like her home and her dog, Sam. So Jennifer made a very selfless and honorable decision to leave her own life behind and soon parted with her boyfriend and moved back into her childhood home in Piscataway, New Jersey to be the the very best caregiver she could be to her mother.
The Alzheimer’s Association, on its website, describes the brutal affects the disease has on caretakers on their website, “All caregivers of people with Alzheimer’s — both women and men — face a devastating toll. Due to the physical and emotional burden of caregiving, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own in 2013. Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, and more than one-third report symptoms of depression.” Jennifer sadly identifies greatly with their statement.
Watching her mom suffer and not being able to explain to her what was happening was one of the hardest things for Jennifer. That and the grief that comes with witnessing the devastating affects of Alzheimer’s disease on someone you love. In the many years that Jennifer was caring for her mother and trying to create a comfortable life for her, Jennifer suffered greatly as well. Unfortunately, Jennifer’s story is one that many family members and caregivers of loved ones battling Alzheimer’s disease will find sadly familiar. As caregiving became a strenuous 24-hour a day role, often Jennifer was left with little time to care for herself as she grew increasingly sleep-deprived and suffered from extreme weight loss, chronic anxiety, and serious injuries to her body that made it impossible to care for her mom without extraordinary pain. She did not have the time or the ability to seek the medical support she needed since she could not leave her mom alone or bring her along without assistance.
Jennifer told me that Alzheimer’s is a disease of plateaus.
Slowly my time became no longer my own. When I first moved in with her I ran the errands, took her to appointments, made the meals and provided cues to assist her with dressing, turning on the tv, washing dishes, using the phone, etc. But then there was a period of heart breaking decline after which she could no longer write, dress herself, tie her shoes, dial a phone number, help with chores or walk the dog in the neighborhood without getting lost.
The disease continued to progress and it reached a point where Linda required assistance with everything, all executive-functioning tasks. By this time Jennifer felt very alone.
I became quite insular, detached from my friends and lost touch with many people during this time, spending the past several years feeling increasingly lonely and isolated in this caregiver role.
Jennifer’s close friend Susan Beischel was witness to Jennifer’s debilitating journey and reached out to me to nominate her friend for GLAM4GOOD. Susan, whose own parents battled Alzheimer’s, knows firsthand the difficulty and enormous task Jennifer had taken on both physically and emotionally.
Jen had sacrificed her own career development, personal relationships, and has put her own life on hold, to give full attention to the care of her mother both physically and financially. I know that Jen wants to make a difference and use what she has learned from this very difficult experience to help others, so I felt that nominating her for GLAM4GOOD could be a way that I could help her.
We all need some support and acknowledgement during important moments in our lives to help us get momentum when we think we are at the end of our rope. I saw Jen near the end of her rope, and I was really hoping that she would be picked for a GLAM4GOOD experience to give her some much needed pampering and a platform to share her message for a greater good.
After recently getting her mom into a long-term care facility because the disease had progressed to a point whereby Jennifer could no longer give her the care she needed, Jennifer is now slowly starting to get back on her feet and re-create her own life. She says her GLAM4GOOD day was the “first experience I’ve had in years that has reminded me that my life has not ended.” Explaining further,
As my mom’s disease became advanced I found I had to completely put my own needs and desires aside in order to be able to properly provide the kind of rigorous care this role requires without developing feelings of resentment. I think the process of putting myself aside for so long caused me to lose my sense of identity. I became completely immersed in her needs and care and later found I needed to rediscover myself. This GLAM4GOOD experience has helped me remember who I am, which has been the greatest gift anyone could give to me. It has reminded me that I am a person who has things to say that people are interested in hearing; that I am still young and can feel beautiful and can be fun too, and most importantly, that I have not disappeared! I am right here, the same person I always was, but with greater appreciation of life and expanded capacity to be patient, understanding and compassionate.
In the moving and emotional video above you meet the incredible Jennifer Krychowecky and her beautiful mom Linda. Watch as Jennifer shares a touching visit with her mother in her new long term care residence. Cheer Jennifer on as she receives a day of much needed pampering by GLAM4GOOD. Something in the video you do not see that meant so much to Jennifer was the generous shopping spree from Etienne Aigner that she received as a gift. Jennifer shopped for whatever she needed to wardrobe her current job hunt and help her get back to feeling good again. I asked Jennifer to share what she wished someone would have shared with her at the beginning of her journey with Alzheimer’s. Watch the incredible video on our GLAM4GOOD day together and check out Jennifer’s compelling and helpful insights below.
1. THERE ARE ORGANIZATIONS OUT THERE THAT CAN HELP: I wish I had known about all of the organizations out there willing to help with funds, resources, information and advice. Here are some of my favorites: A Place for Mom, COPSA (this organization has been one of the most useful resources for me), The Department of Aging’s Respite Grant for Caregivers, Leeza Gibbons Care Connection.
2. LISTEN AND LEARN FROM THE PEOPLE WHO HAVE GONE THROUGH THIS JOURNEY: I wish I listened more closely to people who had been through the journey of primary caretaker of a loved one with Alzheimer’s and internalized how intense and difficult it would become. I wish I had better prepared myself for the more advanced phases of the disease.
3. RESEARCH ASSISTED LIVING AND LONG TERM CARE NOW: If your loved one has Alzheimer’s and you think you may want to put him or her in an assisted living or a long term care facility at some point down the road, I would do the research now. Find the best places (the organizations above can help) and get that person on waiting lists as soon as possible. In my experience, you can typically decline if a bed opens up and you are not ready yet and still remain at the top of the waiting list and be notified for the next bed available. The waiting lists for the best residences often exceeded 6-12 months and the last thing you want is to have to move your loved one with Alzheimer’s multiple times before you get him or her into your residence of choice.
4. LOOK INTO LONG TERM CARE INSURANCE NOW: Had my mom gotten it, our lives would have been leagues easier and I would not be in the financial situation I am in right now.
5. LOOK FOR AN ELDERCARE ATTORNEY: I don’t know how it varies state to state but I highly recommend having an eldercare attorney on retainer to help you with Medicaid if and when the time comes. This will greatly facilitate and expedite what can otherwise be a very confusing and lengthy process.
6. BE PATIENT: Sometimes it can be easier and faster when caring for someone who has Alzheimer’s disease to do things for them, rather than allowing them to do things for themselves. Be aware, the more you do for someone with Alzheimer’s the faster they lose that skill. I’m not suggesting that you wait five hours for shoelaces to be tied because that frustration is not positive for anyone! Just be mindful that although it may take a little longer for the person to navigate through a process with your guidance, more skills may be maintained this way which may make things easier on you. This can also help the person with Alzheimer’s feel more empowered which typically leads to positive thinking and enhances the quality of their life.