I’m going to be perfectly honest with you...
I have a long history of not knowing how to say No when someone asks me to do something or when I see something that needs to be done. My heart yells out, “Here, let me help!” Afterwards, my inner conscious will groan and lament that once again I jumped into a new project without thinking it through. In the back of my mind, I hear my inner demon laughing incredulously, “What the hell did you get yourself into!”
That’s basically how I became a caregiver, 24/7. My parents’ both had Alzheimer’s. I’m an only child, no children, and there was no one else to care for my parents. I had already been my parents’ caregiver for eleven years while working a full-time job. My experience during those years as their caregiver was gleaned from “seat of the pants” experience fueled by my ignorance as their caregiver. Not enough hours in the day, constantly juggling multiple plates while not being able to satisfy everyone, that was my world at that time. Sound familiar? Then my husband died. My world was in total chaos as a result and in my befuddled, grieving mindset it made perfect sense that I should chuck my job, move my parents and myself fourteen miles from our home to a different county, and become a 24/7 caregiver. The decision I made was the right one for me. This is my story…
My life was no different from yours. I was working hectic hours for bosses who didn’t always know how to manage people. I was employed by a company that didn’t know how to acknowledge the work ethic of its employees. So as a result, I felt trapped in a business environment that didn’t provide me with the self-worth or self-esteem I yearned for as a valued employee. Add to this scenario the demands of a husband, parents both with Alzheimer’s and two pups, it was next to impossible to have just a few minutes of “ME” time once in a while. But at the time, I took for granted that’s life, chasing your own tail and falling short on getting everything accomplished. Then one day my husband caught pneumonia which escalated into a downward spiral. After eight months of not knowing what the underlying issue was, we finally received a diagnosis and ten days later he died.
From the moment my husband died, the world I knew, which I took for granted, ceased to exist. Both literally and figuratively. And it’s never been the same since. Widowhood will do that to you. Or as I like to say, “Widowhood sucks!” Those two words say it best. I used to take so many things for granted before my husband died, I don’t any more. And, when my husband died, I was confronted by a very important decision I needed to make. Do I keep my job and find a caregiver for my parents, the majority of my paycheck would go for a caregiver, or quit my job to care for my parents myself? It was one of the most difficult decisions I ever made. And I chose to quit my job, with all the uncertainty for the future and immediate loss of income that this decision curtailed. For someone who always took the easy road in the past, this decision represented a risky move on my part. A move, however, that my heart was telling me was the right one to make.
Even though I had been my parents’ caregiver for many years before I made this momentous decision, I had a safety net before, my husband, my job, and the advantage of not being home 24/7. Once I quit my job, those three components of my safety net were not longer available to me. I was now with my parents 24/7 and what an adjustment that was! Gone were the days of romantic date nights with my husband, leisurely lunches with friends, or having a little nest egg in the bank for a rainy day. Add to this a person who was trying to adjust to widowhood at the same time, I hate to admit it but I wasn’t the most congenial person to be around during that time. My attitude became brutal, my temper a tornado, and my sense of self-worth was in the toilet. I was tempted, on several occasions to run, not walk, as fast as I could in order to distance myself from my current situation.
Until one day, a total stranger asked me, “Are you retired?” I didn’t know how to answer her and I mumbled under my breath, “I’m my parents’ caregiver, they both have Alzheimer’s.” Her response not only amazed me, but it caught me off guard, “I commend you! My mom had dementia, my sister took care of her, I give you credit, you’re a saint.” That random encounter with a total stranger helped me to reanalyze my situation and view it in an entirely different perspective. I used to think I was the only one experiencing the unique challenges that Alzheimer’s caregivers face on a daily basis, and then I learned I wasn’t so unique after all! Prior to this chance encounter, I had gotten to the point I couldn’t look myself in the mirror at night, I didn’t recognize or like the person staring back at me. Have you ever felt that way yourself? Upon reflection I came to realize that what I was doing had the most significant importance. I was taking care of the two most important persons in my life, my parents, when they needed me most.
My inner conscious, who I believe is God talking to me, kept reminding me I’m doing the right thing, DON’T run away. I was amazed at what I didn’t know about myself, and with time I became enlightened. Thanks to God guiding me, being there to comfort me, my eyes were finally opened along with my heart. I may have lost my husband but I had gained my savior!
Once my mindset changed, I came to realize I was feeling a greater sense of accomplishment than I ever felt before. All of a sudden, I knew why I existed, to be my parents’ caregiver. I had purpose finally in my life and it did wonders in not only helping me feel better about myself, but it improved my self-esteem and ultimately my attitude.
Don’t get me wrong, we didn’t have a picture-perfect world. We still experienced daily ups and downs like everyone else. But my attitude was different and that’s what made those bad days more bearable. And most importantly, I could finally look myself in the mirror at night, smile and tell myself, “I’m an amazing caregiver!” It’s amazing what a change in attitude can do for your soul, and help the persons around you.
I learned to listen with my heart, smile with my soul, and accept each day as a miracle and blessing from God. This new attitude made it easier to deal with my Mom’s sundowning, my Dad’s restless legs and constant trips in and out of bed each night, and the inner turmoil I was dealing with as I grieved for my husband. No one says life is supposed to be easy, no one says life is supposed to be fair and no one says we are entitled to a carefree, unbridled existence. With time, I came to accept my role as caregiver with a song in my voice, a smile on my face, and acceptance of what my role in my parents’ life had become, namely they became my children as I became their parent. Once I changed my mindset, I was able to cherish my parents for the persons they used to be, who they were now, but it did take time and patience. I learned so much about Alzheimer’s, about becoming a better caregiver, but most importantly I learned who I am and what I am capable of.
And sometimes we are forced to make that change within ourselves. But with time, that all important healer, change I did. And, that’s why I wrote my book, Good Morning I Love You, Maintaining Sanity & Humor Amidst Widowhood, Caregiving and Alzheimer’s. When my career as my parents’ caregiver ended, it would have been so easy to walk away and never look back. I’ve had friends who did that very same thing when their loved one died, they couldn’t walk away fast enough from their caregiving memories. I came to realize I learned a lot during my thirteen plus years as a caregiver and it would have been a waste of valuable experience to walk away from caregiving as my friends had done. And, I came to realize that if I shared my story, I could help a greater audience of caregivers, both current and future. Current caregivers I could help as a result of the knowledge I gained the hard way, through trial and error. And I could assist future caregivers, so they won’t be blindsided by the responsibilities required of them, if they find themselves as future caregivers.
Along the way, I’ve made many new friends. Friends who I’ve commiserated with, laughed with, and yes, even cried with. Caregiving, like widowhood, has that way of unifying those of us who have exclusive memberships in these clubs. No one knows what a widow goes through, but another widow. And no one knows what a caregiver goes through, but another dementia caregiver. Life has an amazing way of changing, no thanks to ourselves. It’s how we acknowledge that change, accept that change, and embrace that change that determines if we are pointing our life to a happier heart!