When the Chronic Patient becomes the Medical Caretaker

Mom Pats Jan 2 2014

California Dreamin’ on such a winter’s day

Since being “systemically disabled” in June, 2010, as a result of my 30-year bout with the autoimmune and incurable Crohn’s Disease, I relocated from Santa Monica, California (via The Mayo Clinic in Rochester, MN), where I led an exciting life of being an executive/entrepreneur in the entertainment industry, to West Orange, New Jersey, to live with my 78-year old Mom so that I could be close to my life-long friends and have immediate access to the doctors who were most familiar with my complex medical difficulties.  Like all chronically ill people, I needed “support” and for me that meant easy access to reliable and interested friends and family. At 50 years of age, I was reluctant to give up my life as a productive professional person but my health had become too unpredictable and my participation in projects became more of a potential liability than the asset it had been for many years. My doctors had recommended this a few years prior but I never felt more alive than when I lived in Santa Monica, CA and I had spent way too much time lying on my back in hospitals up and down the East Coast to suddenly cash out just when I was finally running/biking on a beach IN Southern California listening to The Eagles rather than dreaming about it in an Emergency Room during a blistering winter.

Role Reversal – Patient becomes Caretaker

I was depressed by this radical change but it had to be embraced or else my mental rejection of a situation I could not change would eventually manifest itself as a physical problem and I had too many of them already to be so cavalier towards the emergence of a new one.  As I eased into my new life back in New Jersey, the main activity of which was initially repeated long hospitalizations or going to and from doctor appointments and diagnostic tests, my Mom again became my primary Medical Caretaker and she also graciously opened up her beautiful home to me.

I grew up in Howard Beach, Queens in a great middle-class community where the everyday norm was playing after-school pick-up hoops, stickball and aggressive touch-football on concrete side streets running pass patterns designed to break open because of “screens” set by parked cars.  Our home was nice but I spent most of my time outside playing ball.  When my folks elected to downgrade a bit so they wouldn’t have to be responsible for all the maintenance required of a traditional homeowner, they moved into a luxurious condo in New Jersey never thinking space would have to be made for one of their adult children to move back home with them.

So it was heart-warming to be able to turn to the person you love most so he or she can help take care of you but this time my medical issues were much more serious and the natural passage of “time” required continual effort and almost 24/7 careful attention which my Mom could no longer consistently provide due to her own battles with the undefeated, undisputed champion of all-time, Father Time.  As a result, and despite my then disabling, weak and unpredictable medical condition, our roles toward one another often necessarily became reversed and I, the Patient, had to become a Medical Caretaker, to my Mom.

A Formidable Foe – “Father Time”

My Mom is in generally good health and she looks (and acts) many years younger than her 78 year-old birth certificate would prove (e.g., see her above modeling the New England Patriots sweatshirt which she’s worn for MY superstitious purposes as we’ve watched their games together this 2013 season and she has apparently “caught” whatever it is which made me adopt this team as my own in and around 1975 when I was 12 years-old) but “older age” is unbeaten in terms of causing inescapable mental and physical fallout which in my Mom’s case is two (2) inoperable knees, some vision and dental issues and occasional, unpredictable “forgetfulness.”  Her knee and weak surrounding muscle issues are further complicated due to her contracting “Polio” as a child when she lost considerable control over her Quadriceps muscles.

While she always accompanied me to important doctor appointments, I began to drive her to hers and I also started hanging around the Exam Room to make sure the information delivered by the doctor was not at all “diluted” when my Mom subsequently communicated it to me and my sisters.   After all, she’s been through SO MUCH medical strife as a Parent- and Wife- Caretaker that if I were her, I’m sure I would also try and “tune out” these relatively minor medical challenges.

The Power of Perspective

To facilitate the transition from independent active patient to reactive caretaker and to ease any understandable depression complications associated with my aforementioned relocation and career change, I relied upon “Perspective” to most accurately “frame” my situation.  In that regard, I looked at the time I would spend with my Mom as a blessing of sorts in that I would be among the lucky few who got to spend such quality time with their parent at what typically would be such a busy time in an adult child’s life that it never even would be possible.  As I’d never give my Mom grandchildren due to my deliberate reluctance to intimately partner with a woman in my seemingly never-ending medically challenging and thus financially unpredictable life, it felt good to be able to give my Mom exactly what she needs, when she needed it.  We have also bonded on another level, that is, Patient-to-Patient.  But as a chronic patient, I know all too well how vulnerable it can feel to be so dependent on another person and also how you can feel like a burden to others.

My friends and several relatives have NEVER made me feel that way but I feel bad when caring for my illness creates responsibilities for other people.  Then again, I also know how wonderful it feels to know that people care enough about me to want to help me.  With that in mind, I chose to do for my Mom what many others had, and have, been doing for me.  However, it was, and is, challenging because my patient-needs have not gone away and in some instances they’ve actually become more complicated.  Nevertheless, I felt I had the opportunity to do for my Mom what she had done for me on SO MANY occasions and coming “full circle” in that manner feels special even though it is oftentimes physically, mentally and emotionally exhausting.

Maintaining Objectivity as a Caretaker is not easy

Next month my Mom is finally having Double Knee Replacement Surgery.  Her knees are in such bad condition and prone to cause her to fall unexpectedly that she often must so slowly and carefully navigate the ground surface in a shopping center parking lot like she’s trying to ascertain the presence of land mines or IEDs in a battle-torn region of Afghanistan. In such instances I must remember she’s not my Mom but rather a patient who,  unfortunately, but understandably, must struggle with the simplest and almost instinctive body response of walking in spite of terribly damaged knees which could unexpectedly cave in on her even due to the slightest change in the slope of the parking lot cement.  Maintaining that separation of love as a son, from the responsibility as a Caretaker, is absolutely essential to helping her because there’s no room for emotion when being relied upon as a Caretaker.  But just like I cannot watch a New England Patriots football game without worrying about a fumble on every play, it’s not so easy to eliminate emotion when you are acting as a loved one’s Caretaker.

Diffusing the Frustration and identifying what is Really Important

As stated above, it can be physically, mentally and emotionally exhausting when acting as a Caretaker especially after being a Patient because anticipating patient needs when you know what they are can be a self-fulfilling prophecy as you try to stay one step ahead so that worst patient fears are not actualized.  But when you throw into the equation that the Patient in this case is my Mom, a few new “levels” are added to our relationship of 50 years.  I think these new relationship levels are naturally created to bear the brunt of our mutual petty frustrations with each other which stem from our new respective roles as Caretaker and Patient because these trivial issues never affect how much we care about each other.  You see, my Mom is still my primary Caretaker and I am still also a chronic Patient so the unpredictable mutuality of our roles often causes arguments which we both know have zero effect on our love for each other but they do cause stress and that’s never good when you also live in the same household.  Thankfully these new levels of our relationship serve as “shock absorbers” for what can be hour-to-hour and day-to-day arguments about leaving too many lights on, using the coffee-maker incorrectly, trying to clear the dinner table while I am still eating and my Mom’s strange affinity and tolerance for watching “The Chris Matthews Show” while we eat dinner and he interviews interesting people, but never lets them talk.

Taking 5 steps back to take 2 healthy steps forward to Paris, France

As also generally mentioned above, in January, 2014, my Mom is having her Double Knee Replacement Surgery but in February, 2014, I am having Left Hip Replacement Surgery.  Habitually, we are certainly an “Odd Couple” with my “Oscar” to her “Felix” and due to the overlap in our respective rehabilitation periods, we might need a 3rd party to help us during any post-operative conflicting physical rehabilitation occasions.  But even more importantly, we both need something positive to look forward to in order to yet again take 5 medical steps backwards in order to take 2 steps forward in lives hopefully without pain or seriously disabling medical problems since we’ve both been through an inordinate amount of life’s medical adversities.  Poignantly, I think we have just the right “prescription” to celebrate moving forward because in June, 2014, I will be speaking at a healthcare conference  called “Doctors 2.0 and You” in Paris, France, and I will be taking my Mom along, to what is her favorite city in the world.  It is the city which she frequently shared with my Dad, her husband of over 50 years who passed away in 2008, and also with her daughters.

Because of my Mom’s recent unreliable knees and her understandable reluctance to undergo two (2) physically and mentally demanding knee operations at the same time, she hasn’t been able to travel to Paris, France in a few years.  But her circumstances changed and just as the doctors predicted, she wound up begging for such an involved surgery and demanding rehabilitation regiment. While “it seldom turns out the way it does in the song,”** by bringing her to Paris I anticipate both of us experiencing the natural healing powers sometimes found in Life “once in a while ….  in the strangest of places, if you look at it right.** To that end, I am confident it will ease the burdens we’ve shared in helping each other as Caretaker and Patient.  After all, Life should be about living, making and sharing memories and not about getting caught up in all that comes attached, and is required of you, when you are given the label of “Patient” or “Caretaker.”

leave a  comment  BUTTON

**   These are excerpts of lyrics to The Grateful Dead song, “Scarlet Begonias,” written by Jerry Garcia and Robert Hunter.

One Response to When the Chronic Patient becomes the Medical Caretaker

  1. Michael, you are indeed sharing and enjoying a very special time in your mother’s life that not many of us can. And your taking the time and effort to write about your experiences so that others can learn about the dual role of patient and caretaker through your special relationship with your mother is wonderful!

    You should feel very proud ~ thank you!

Leave a Reply