Back in early 2011 I created the tagline “embrace change and step into your possibilities” for my new Transformational Life Coaching business. It has occurred to me more than once that I wrote this for myself … as a reminder to “be” with whatever shows up in my life. As an individual who struggled with acknowledging and working through feelings of discomfort, I was often in resistance to recognizing the feelings and sought out ways to avoid being uncomfortable. Since identifying that life-long pattern and self-limiting beliefs, I’ve made a concentrated effort to shift my mindset and to be with my feelings; knowing they will flow through me and not destroy me. It’s a process and part of my life’s journey to embrace change with gratitude and grace.
That being said, I am now faced with a significant change in my life; that of becoming a caregiver for my mother. What seems to have come out of nowhere has brought about a life transition that wasn’t on my short term radar. As my brother and I became aware that her idiosyncrasies were no longer something we could categorize as “that’s just mom”, we opened up a new perspective, realizing that she was suffering from an illness. Over the past several months, we learned that she is exhibiting the symptoms of mild to moderate dementia, most likely of the Alzheimer’s type. This has been confirmed by both her neurologist and an in depth analysis performed by a neuropsychologist at The Memory and Wellness Center of a local university. As we still try to understand what’s really going on with her (the onset and the rapid decline have us wondering if something else isn’t at the root of the changes), we’ve engaged medical, financial and legal resources to assist in what we need to do today and what we need to plan for her future.
We had not anticipated these changes at this time in her life. Mom comes from parents who lived long lives; her mother just passed 8 years ago at the age of 93 and was in relatively good health until that time. I made up that my mom would be “good” for another 15 years – at least. Although I often imagined she would live with me sometime in the future, I didn’t foresee that we’d be facing this when she was only 76. Nor did she.
My mother is an exceptional woman. After leaving Chicago in 1978 she took on a whole new career as a travel agent and pursued a passion to travel. She has a world map covered with pins for every location she’s visited. She pushed my father out of his comfort zone and encouraged him to see the world with her. I recall that he was very comfortable staying put in his home, but with her influence, they went to The Galapagos Islands, Italy and on a plethora of cruises to name a few. For his 60th birthday she surprised him with his dream vacation … an African Safari. At 62, he died suddenly and my mom became a widow the day before turning 60. After the initial stages of grieving, she went back to work and continued to travel on her own and with others who shared her interests. She kept moving herself forward and was always involved with what stimulated her – she did not sit still.
I was married just 3 months after my dad’s death which was bittersweet for all of us. When I became pregnant soon after that, joy was brought back into my mom’s life. My son was born in 1996, my first niece arrived 3 years later and my second niece 2.5 years after that. For approximately 10 years, my mother was not only a travel agent; she was a nanny to her grandchildren. She took care of each baby until they were between 2 and 2.5 years old. Her patience to play patty-cake and peek-a-boo (amongst all of the other things young parents usually do) was amazing. She had the energy and the love to share with each of them. She gave my brother and I the gift of knowing our children were loved and cared for during the day while we were at work. She managed to be of great service to us and to create a deep and enriching bond with each of our children. She took them everywhere with her – shopping, to meet friends and to the travel agencies that employed her as an outside agent. Her friends and relatives often remarked that they didn’t know how she did it … and yet she LOVED it. She was sprightly and enthused. Nothing made her happier.
When I divorced with a 2.5 year old, I moved closer to her, recognizing that she would be my main source of support. I traveled often for business and she took on the role of being not only a grandmother, but the surrogate parent while I was away. She was an absolute blessing to me. It’s a bizarre twist of fate as I become the primary caregiver to her and my 15 year old son now watches out for her well-being.
I am so fortunate to have my brother; my very best friend. It’s with him that I share the day to day experience of what’s occurring. There’s no one else who really notices the magnitude of changes taking place. Although he’s offered to take on 50% of the care for my mom, circumstances haven’t supported his desire. We are fortunate that I’m able to accommodate the majority of her needs since I do not have a full time position that requires me to be at an office … and that my mother is comfortable in my home and has learned to love our dog.
Just as I was investing myself in beginning my own business as a Transformational Life Coach, we learned that not only did mom need to be cared for by us, but that she needed to give up driving. The independence she knew and thrived on has been slowly slipping away and robbing her of who she was. I have taken on driving her where she wants and needs to go. I attend doctor’s appointments with her. I take her to and from her mah-jongg games 3 times a week (thank goodness for her extremely understanding and loving friends who are committed to sticking by her). I take her shopping, to have her hair cut and to get her nails done. I have made her a top priority along with my son and my own self-care (which admittedly is suffering as I adjust to the circumstances). In all, I am grateful to have the ability and desire to integrate her into my life.
I sense that I don’t have much more time with her while she is in a place of awareness and has the ability to communicate. I notice the deterioration of her language skills and her inability to process thoughts that came naturally before. Playing Scrabble with her has emphasized just how much is slipping away. My recall is of her slaughtering me when we played the game… her vocabulary was voracious and her spelling impeccable. She’s now making up words and seems convinced they are real. She has difficulty counting to keep score. My mother was an avid baker and I have fond memories of the smells that came from her kitchen. She recently attempted to make 2 long standing recipes and both did not turn out well. She doesn’t read anymore and sits in front of the TV for hours on end when in the house. It appears to calm her when she settles in on the couch after being out of her routine for any period of time.
She’s lost her interest in being social and engaged. The first clue was when she began saying “I just can’t be bothered” when I’d ask about why she wasn’t participating in an activity or attending a meeting. She doesn’t want to talk on the phone often … she doesn’t even notice when her cell phone is ringing. If I were to tell you about one of her defining characteristics – I would certainly mention that she’s been someone who made extensive use of the phone. This is a woman who couldn’t stand to hear the phone ring and not answer it – no matter how inconvenient the timing was. She would call her answering machine frequently to collect calls she missed. She would keep me on the phone long past our having anything new to say to one another. It’s like a contradiction of who she is to see her avoid answering the phone or calling someone back.
I’ve referred to these last few months as an “in-between” stage for her. With everything I’ve read, I anticipate that she will lose touch with reality. She is aware that she can’t find her words, that she can’t remember things and that her independence is fading. I can only imagine how frustrating and depressing it is to face the limitations befalling her. She turned 77 yesterday and our family gathered at my home for dinner, cake and gift giving. Just 2 years ago we celebrated her 75th birthday together in the Florida Keys. Although last night was about celebrating her, again the term bittersweet came to mind as I compared the woman she was 2 years ago to who she is today.
In all of this, from the moment I recognized she was suffering from an illness, I’ve discovered patience in me that I was previously unaware of. As a young adult, I remember saying “the word patience must have been left out of my vocabulary when I was born”. And here it is, the gift of patience … one of my greatest assets today; one which supports my ability to be a caregiver.
It’s curious how circumstances allow us to discover things about ourselves and others. Less than 2 years ago I found my purpose. I declared that I would be in service to others, that I would use my natural ability to connect deeply with others and pay it forward. My stated mission is to serve as a conduit for love, inspiration, positive energy and enthusiasm. Although my worldview was to bring my gifts to the community at large, to grow a business where I’d be in support of clients who wanted to invest in themselves, what’s shown up for me is that I am first and foremost in a position to do this for my family. I anticipate that my business will flourish, just not right this moment — not in the way I was envisioning. And that’s all because of the choices I have made and continue to make. I’ve been given the opportunity to provide love and care to my mother who in the past was always there for me. It’s with love and respect for her remaining dignity that I choose to be right where I am today, doing what comes naturally, in support of my mother as her caregiver. I don’t have control over many of the changes occurring but I do have choices in how I respond. So, I move ahead with my arms open, embracing what comes my way and stepping into the possibilities of today and tomorrow.
Copyright 2011, Possibilities Unlimited, LLC
Janice Karm
