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My new American Dream

I’ve been thinking a lot lately about the American Dream. Obviously it looks different for everyone, but for me it was always that if I worked hard and behaved with integrity, the career and success I wished for would eventually be within my grasp.

My parents valued education - especially my mom - who used to say that “education is always a worthwhile investment.” So I worked my butt off in school, got a great college degree, and secured a job in my field before I’d even graduated. I was on my way!

Education is always a worthwhile investment.

For 12 years, my mom and dad were empty nesters, enjoying each other’s company but also working diligently toward retirement… and then our world came crashing down.

Suddenly - my mom was let go from her job. She was shocked. She was a focused, talented, impeccable worker. They gave her no reason, no explanation, and her questions of “why?” went unanswered. This was a small company where everyone was like family, and she was heartbroken. Perhaps HR was following protocol and perhaps, legally, they had to remain silent - but these words… protocol… legal… policy… procedure… Let me tell you something: - HUMAN to HUMAN: if they had told her the truth, we could have determined her diagnosis of younger onset Alzheimer’s at least a year and a half sooner.

Because the truth is, she was probably making grave errors - but she didn’t know it! At home, you aren’t typing up reports or filing paperwork. You aren't creating spreadsheets or documenting employee statistics. So, at home, we didn’t see the signs! Instead, my 57 year old mother remained hurt and betrayed, unemployed, depressed and isolating herself in her home until we finally started noticing symptoms ...a year later! She has Posterior Cortical Atrophy, a rare form of rapidly progressing younger onset Alzheimer’s that steals your vision along with all your cognitive functioning, speech, and memories.

At the time of her diagnosis, I was the Managing Director and Director of Development at a professional theatre company. As an actor, designer, and Executive Team Member, I worked 6 to 7 days a week, often 15 hours a day. The job took blood, sweat, and tears, and while my colleagues tried to support me as emotionally as they could as my friends, all I was offered professionally was that I was told I could take some time off now and then when things got “bad.”

I was losing a little more of her every day.

I knew little about Alzheimer’s, but I knew enough to know that mom’s progression was going to be fast, that I was losing a little more of her every day, so living 3 hours away, working 6 days a week, quickly became my idea of a nightmare. They were furious with me when I resigned a year after my mom’s diagnosis. I loved my job. If I had stayed, that company could have been part of my legacy… But suddenly nothing else mattered to me, and I told them in tears, “I need to be with my mom” and I walked out the door. When I moved back home, I was lucky to find another job in the arts that was far less demanding of my time, and I could focus on family. But then, only a year and a half into that job, suddenly - literally overnight - it became unsafe for my mom to be left alone in her home. I did not want to leave the workforce at 34. My dad was only 61 and he couldn’t retire yet. But both facility care and in-home care are so expensive that it made more financial sense for me to quit my job.

So once again, I found myself before a boss, tendering my resignation. But this time - it went differently. Because my boss had a father who had passed away from Alzheimer’s. So she didn’t let me quit. Instead, we redefined my job, allowing me to work from my mom’s house. As my mom's needs increased, my at-home work hours decreased. I didn't make much money (I brought in a whopping $30 one month!), but I deeply respected the company, enjoyed my work, and thankfully I never had a gap in my resume.

My mom is now immobile, legally blind, and on hospice. She needs 2 adults caregiving constantly to meet her needs. So, even though it was a huge financial blow, my dad did end up retiring early to join me in her 24 hour care. Up until his retirement though, we got very lucky. His supervisor had a parent living in a memory care facility with Alzheimer’s. With this supervisor’s understanding and willingness to be flexible, my dad could work from home on bad days, leave work suddenly for emergencies, and take frequent days off without fear of repercussion or job loss.

Our bosses helped us feel less alone, and we began to realize so many other families are on a similar journey. Getting connected with the Alzheimer’s Association was vital for me to continue feeling less alone in this. I suddenly felt like I had support and people who genuinely care about me, my mom, and my family. Their staff has met with me in person, chatted with me over Facebook, and been only a phone call away if I am struggling and need someone to talk to. All this at no cost to my family. They also hooked me up with an online support group through Hilarity for Charity (Seth Rogan's Alzheimer's charity), and I have an online monthly support group I attend with other caregivers under 40 like me. They are from all over: Canada, Wisconsin, Texas, Florida. Many are moms with young children. All of them are struggling to make ends meet either with one spouse bringing in the only money for the entire family (like my husband does for us), or both spouses having to work extra to pay for nursing home care, and even some single women having to remain jobless to care for their moms in home with little to no income by which to do it. There are actually so many families like ours out there...

Chances are you work with someone who is caring for a loved one with Alzheimer’s. Or you work with someone who has Alzheimer’s. You may not know it in either case - it is so scary to admit, especially at work - because as a caregiver there is fear of being punished for the demands this places on you, creeping into all aspects of your life. And those with Alzheimer’s want to live their normal life as long as possible and to avoid the stigma, especially while they are still in early stages and functioning. If you are a manager, supervisor, or business owner, I implore you to follow the example of our bosses and work with your staff to help them balance and create a win-win atmosphere. This journey is debilitating enough for us without adding worry of job loss and financial insecurity.

Alzheimer’s changed our American Dream. If we can continue to keep my mom home and out of a memory care facility, we will drain less of my dad’s retirement account to provide for him later in life. But he will never enjoy retirement with his bride. I have not built on the career trajectory I planned. My husband and I sold our home and moved into my parent’s house with our son. It’s not easy - but for us, it’s right. We can honor my mom, balance the caregiving workload, provide each other respite, and pool financial resources.

I’m still sad. It’s still the hardest thing any of us has ever done. There are days we all feel trapped. But I don’t have regrets or resentment about any of this. Every step of the way, I have spoken my truth:

“She would have done it for me.”

So my American Dream looks different than I imagined. But here’s what I choose to see: I love that I get to raise my son at home full time like my mom did me. I love raising him in a multi-generational home. I love that I saw my dad’s health improve and stress level diminish when we moved in. I will never regret spending my mom’s final days by her side, holding her hand. We will never be rich, and our home life is unconventional, but our house is overflowing with love, and that was really all I ever dreamed for my life.

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