I don’t recall ever being assigned the role of caregiver for my parents. I didn’t volunteer for it either. After all, I was the third oldest childin our family. Isn’t there a family hierarchy rulebook somewhere?Maybe I had the false impression that the older siblings in a family naturally absorb that role. Even today, I really don’t consider myself a caregiver. Like so much in life, timing is everything. We just do what we feel is the right thing…At one point in time, I was driving home from another long day at the hospital with Mom. It struck me that I better wake up and face the reality. I’m disappointed that it took almost 50 years for me to wake up to the situation. Doctors and nurses were beginning to direct questions about Mom’s health issues to me. They asked questions about her previous illnesses, medications, family history.When this chapter of my life first began, heck, I was only focused on my career and personal life. I was pretty selfish. I preferred staying home and watching local sports teams (Cincinnati Reds or Bengals), rather than spend a day at the hospital or nursing center with mom.I loved my parents, but we were not a very close-knit family as us kids got older. With Mom’s worsening health, she became bitter. Bitter that she was where she was, and bitter that her kids didn’t visit. We just couldn’t get her to understand that it was her own bitterness that kept her kids and grandkids away.
I fell in to that same attitude for quite sometime. And then it happened, Mom was rushed to the hospital late one evening. She was listless and unresponsive. At the time, she was living in a nursing facility in Milford, Ohio. After being tested and treated for almost 6 hours (most of the time we just sat and waited). The problem turned out to be a Urinary Tract Infection (UTI). At 3:00 am, the emergency room doctor came in and informed us the problem was caused from not drinking enough water, and she was advised to start doing that right away. Her beverage of choice was a diet cola.
So, by that time of night I was exhausted and needed to get some sleep before needing to work that morning. Normally, I didn’t ask a lot of questions and challenge my parents. We Stith kids just didn’t do that. But this time I thought, why not? I was a little upset with her for being in the hospital in the first place. So I asked her, “Mom, why don’t you drink more water? It would be so much better for you”… She looked me square in the eyes and said “I don’t like water.” That’s it, that’s the only response I got from her. Six hours at the hospital, most of it waiting in the emergency room. Very little conversation, almost none actually…..just to find out she “Doesn’t like water”.
Oh geez… Bless her heart she really was a good mother to us, especially when we were younger. Mom was a beautiful young woman who married Dad at a very young (if not illegal) age. Unfortunately, most of her childhood had been spent in a children’s institutional facility. It was during a time when our country was still suffering from the Great Depression. Her parents were not able to care for her and her brothers, so the kids were placed in a facility in northern Kentucky. It turned out to be a very caring and loving environment which, to her final days, she always spoke lovingly. What they didn’t prepare her for was the life ahead of her, and raising a family, especially once we became teenagers. But in all fairness, are any of us truly prepared for life’s changes coming ahead of us?
After that particular hospital experience, somehow my attitude finally began to change. Albeit very difficult, I began to listen more actively to doctors and nurses. I wrote things down, and then later discovered I couldn’t even read my own medical notes. It was a huge challenge for me to understand medical terminology, especially when they were being spoken during emergency situations. After all, I was an IT guy. Those are completely different acronyms!
Thank goodness for the Internet. Google became my best source of information. But, even with reading it online, I wasn’t fully absorbing what was being said. This is when I learned that building good relationships with all hospital staff is very important. And then the hospital trips increased. Mom had earlier fought a bout with cancer when she was in early 50’s, and had to have one of her kidneys removed. She did go into remission but her health never bounced back. She also was diagnosed with diabetes when she was in her 40’s. We all think she had been misdiagnosed for several years prior and she quickly became a brittle diabetic. Looking back, that was the time when we kids should have been more involved with the doctors. For Mom it became one illness after another, and finally she was required to move to a nursing care center to get the 24 hour attention she needed. She was only in her early sixties at the time.
I spent a lot of time with my mother during her final years. Most of it was spent driving to a doctor’s office or hospital. My experience has involved a lot of sitting and waiting in hospital rooms or lobbies. She never talked much (except when they messed with her medicinesJ). She just wanted someone there. At that time, my Dad’s emphysema had gotten much worse and wasn’t able to make all the trips. But Dad was a terrific husband. He visited the nursing home every day, eventually he moved in with her.
During her lifetime, Mom never learned to drive. Dad was her personal chauffeur for over 60 years. I know it frustrated him at times, but he never complained. So, during her final extended stay in the hospital she and I became very close. Still not talking a lot, but laughing more. I decided, if she wasn’t going to talk to me, I would make it my daily challenge to get her to laugh.
It worked. Even through the horrible pain, my Mom would laugh at my stupid comments and jokes. One thing the Stith family has going for us, we enjoy laughing. As I write this, it brings a huge smile to me. My sister Kathy and her husband Tim, my daughter Sarah and her husband Steve, and my Uncle Earl and Aunt Mona. We were all there, sometimes in shifts. But I don’t remember too many times that we didn’t find something to smile or laugh about. It comforted Mom. I admit, it also annoyed her at times.
Sometimes we laughed too loud. We often thought we had a crazy family. I can look back now and understand exactly what was going on.
On September 9, 2010 I was called to the hospital at 4:30am or so. After spending nearly two weeks in the Intensive Care Unit at Anderson Mercy Hospital in Cincinnati, the doctors had reached the conclusion that any future operations would cause more harm than good to Mom. Her cancer had spread throughout her abdomen and with only one kidney…there was simply too much risk. The options were slowly and carefully explained to Mom, and hospice care was introduced (or implied) as the best option.
I had become very accustomed to sitting next to Mom’s at a hospital over the past few years. It was quite normal for the doctors to speak directly to my Mom and explain the situation. I think they’re required to do that. So, Mom (and Dad now does the same thing), looks attentively at the doctor and pretends to understand what they’re saying. But then, when the doctor would leave, she typically turned to me and asked “What did he/she just say?” I would do my best to explain. But on September 9, 2010, Mom was paying full attention. She didn’t cry. Neither of us cried. We were too tired. She just wanted to sleep.When the doctor finished explaining the situation and left the room Mom turned to me and asked “Is it OK Mike?” ….I knew exactly what she meant. (I’ll explain later why that statement means so much to me). She understood what hospice care is. At that moment, she somehow looked relieved. In essence, she was asking me if it was ok to let go. I didn’t hesitate long before I answered “Yes, it’s ok Mom”. I confirmed the choice with the rest of the family.After a couple hours of discussions, Mom was taken off all medications, except for those that helped with her pain. The next twenty four hours or so following that moment, are now a blur to me. It was a surreal experience to say the least. But for a few hours after the decision was made, Mom became a much younger version of herself. Feeling no pain, very relaxed from the “happy pill” hospice medication. I’ve long since forgotten the name of the medicine. Kathy, Tim, and I will never forget the moments of calm and laughter we had in that hospital room. Later in the day Mom was taken back to the nursing facility to begin her hospice stay. Luckily she was able to be with Dad, he also lived at the center. As we all expected she didn’t wait long to pass. The pain was gone, and she got to spend her last night with her husband of 60 years. The last words she said to Dad were “I Love You” and he said the same to her. To this day, I cannot remember hearing them ever say those words to each other before. I’m sure they did and I missed it. But it was a beautiful thing..….. Mom passed away in her sleep on Sept 10, 2010.
MOM’S FAVORITE THINGS
CAREGIVING As I mentioned, I don’t consider myself to be a Caregiver. I never had to take care of the day-to-day medical and physical needs of my parents. The most challenging thing I faced was driving my parents to various locations and events. Both parents were in wheelchairs. Both required portable oxygen tanks. Trust me, until recently portable oxygen tanks were very heavy!
On more than one occasion I uttered an expletive or two while trying to fit the wheelchairs and tanks (and parents) in to my car. I’ll say it again, that physical effort is nothing compared to what true caregivers do everyday. Nurses, therapists, aides, and so many more people deal with these situations every single day. Not to mention all the special people that fill the physical needs of family members in their homes.
So, when I speak of caregiving, my respect and honor goes out to the people that work in emergency rooms, nursing facilities, and family service professionals that don’t get nearly the credit, or pay, they deserve. My thoughts go out to all family members that quietly take care of their parents, grandparents, or sick children and have full time jobs as well.
I invite each of you to join the OneLegacy community. You aren’t required to share your story. But I have a feeling, based on my personal experience in writing about my Mom, I think you will enjoy the same healing effect that I have experienced. After all, we are a community that cares.
ONE LEGACY I made a statement earlier in this story about the limited hesitation I felt prior to answering my Mom’s very deep question. Probably the most important lesson I’ve ever learned occurred to me while spending the time at her side. I mentioned earlier that it took me almost 50 years to come around to the fact that our parents need us as much as we need them.
Our families need us, regardless of disagreement or dysfunction. I totally admit how selfish it was for me not to get involved (or least ask questions) when my parents started getting sick. It makes no difference how old you are and how many siblings you have. For the past 3 years, I’ve often asked myself “What if I hadn’t spent all that time at the hospitals and doctors offices, listening to doctors and nurses. And if I hadn’t, what if I would have been asked that same question from Mom?
I learned how important it is to have family representation for medical issues. Not just one family member, if there are multiple siblings, invite everyone to the experience. I just can’t imagine facing that same situation not being prepared and knowing Mom’s personal wishes.
My mother’s life and passing have humbled me more than I can explain. It has been 3 years. I’ve spent a lot time going through box after box of her personal items and pictures. Due to storage constraints, each year I force myself to get rid of more and more items. Mom didn’t have expensive items, just small trinkets and crafts that meant something to her. I find it ironic that I now own many of things I once gave to her as gifts. It seems like Mom’s legacy is fading.
I guess my point is, if I can even express it, I urge everyone to evaluate relationships with family or friends. Ask yourself, are you assuming that person will be around forever, or even tomorrow? As for me and my story, all it took was my time, usually just sitting with my Mom. She was feisty at times. I learned not to debate.
I learned one of the golden-rules of life….never pass up an opportunity to shut up. I learned to avoid confrontation and refocus and enjoy the special moments instead. I also learned to appreciate how much love she offered, but had such a difficult time sharing her feelings. You might be experiencing the same situation in your life.
So, if may I suggest, start with the simple stuff, go to dinners. Go for drives. Go to doctors appointments. Ask questions. Forgive.
It made me a better man……it makes me care even more about my own personal legacy.