Those in the sandwich generation expect to care for our aging parents, but caregiving for a sibling at the same time isn’t usually on the menu.
For years I had heard of the sandwich generation—those people who were caregiving for their children and their aging parents at the same time. While I thought that was an interesting concept, I never anticipated that I would become part of that generation. But I did. In fact, I have had several opportunities to care for various sick and ailing parents and family members. Here, I share a little bit of the craziness of caring for multiple loved ones, but mostly I share the survival strategies I learned along the way.
In September 1997, both of my parents came to live with my family. “My family” included me, my husband Jim and my two children Shep and Warren. Our dog Lucky would show up a few months later in January of 1998. My parents included my dad Tom and my mother Janie. Because of the various medical conditions of my ailing parents, living with us was the right choice. The process of turning me into a sandwich actually started in July 1997 when my father was diagnosed with terminal colon cancer. As my father’s health declined, my husband and I felt it would be better for mom and dad to live with us. Dad would have three adults caring for him instead of just one. My mother suffered from multiple impairments, and caring for herself was the most she could achieve some days. With two more adults in the house, mom wouldn’t have to bear the full load of caregiving for my dad every day. After several months of lobbying on my part, both my ailing parents came to live with us, and I officially became part of the sandwich generation.
"After several months of lobbying on my part, both my ailing parents came to live with us, and I officially became part of the sandwich generation."
Even though my dad passed away in February 1998, my mother continued to live with us until November 2005. That’s when she went to live with my single brother Mike, who had a much slower lifestyle in a much smaller community. I also have two other siblings, Jerry and Janie, but they lived too far away to provide direct assistance and had families of their own. Since Mike was single and had room for mom, he was a natural choice for the job. This move meant I could stop being a sandwich. Since Mike had no children, being sandwiched wasn’t a concern for him. Unknowingly, my non-sandwich time was to be short-lived.
In the spring of 2007 both my mother and my brother Mike seemed to be in declining health. My mother suffers from a mixture of ailments: diabetes, arthritis, constant kidney infections, cataracts and depression, to name a few. She has survived colon cancer and open-heart surgery (a sextuple by-pass), but it was a kidney condition that seemed to really take its toll on her. In the fall of 2007, my mother came to stay at our house sporadically while she received medical treatment at Wake Forest University Medical Center in Winston-Salem, North Carolina. So intermittently, I got to be a sandwich. But it was January 5, 2008 that changed all of our lives. That is when I became a sandwich again and the side! My mother returned to live with us and she brought my ailing brother with her. Not only was I sandwiched between my mother and my children, but I was also hemmed in sideways by my own generation—my brother!
Mom was battling a kidney condition that was greatly compromising her health and her ability to function. She was trying to care for herself and my brother, but was struggling to manage. I invited her to my house for a few days so we could all work together to get mom and Mike pointed in the right direction healthwise. When mom showed up with Mike, I didn’t even recognize him. He looked like death warmed over. I raced Mike to the hospital that very morning. He was diagnosed with pneumonia, e coli, hepatic encephalopathy and catastrophic liver failure. The physician on duty told me that he had seen people with liver function studies like Mike’s die in less than a few weeks.
"No matter what life throws at you, stay positive. It makes all the difference because attitude changes everything."
Mom and Mike spent six months at my house. I call it the living in the living room era of my life. During that time, Mike was hospitalized 4 times, twice for over 10 days. The doctors gave up on him twice, but now call him a miracle. My mom underwent 3 surgeries in Winston Salem, a city about 40 minutes from my house, during the same six months. One time both of them had surgeries on the same day—in different cities! Add to that mix the revolving door of relatives and it gets quite interesting. It really was a “doctors, nurses and sick people on parade” kind of thing. Through it all, and I mean all (changing bandages, ER visits, odiferous wounds, chest tubes, wound vacuums, surgeries and decisions to burn furniture because we never want to sit on it again after that happened to it), I was constantly looking for ways to juggle the chaos without losing my sanity or my husband.
After Janie and Mike were able to live by themselves again, I reflected on how I was able to manage the crazy mess of caregiving for an ailing and aging mother and an ailing brother. It was certainly more overwhelming than caregiving for my dad (which I thought was challenge enough). I wanted to understand why I was able to keep smiling and still feel like I had a great life even though I was caregiving for two seriously ill family members. I realized that my attitude about being the sandwich and the side made the whole ordeal manageable. I would joke about this otherwise horrific situation, telling people that I had managed bad projects before and this situation was just another bad project. All I was trying to do was keep the pieces together until the project ended. Instead of complaining about my situation, I viewed it as an opportunity to spend time with extended family as many relatives came to visit. Yes, it was hard times, but I was determined to make the best of it. In fact, I tried to create a party atmosphere at all times. That’s right, even in the face of all this adversity, I was always trying to create fun because if it can’t be fun (even the hospital), why do it? I have to admit that on many occasions, the hospital staff found our behavior irreverent. I think they just had their surgical caps on too tight!
Also, I discovered that life happens. And what was happening to mom and Mike was life. As I sorted through the moments of those 6 months, I came to the following realizations:
When the living in the living room era started, I made a pact with myself about how I would approach the situation and created a mantra: “I will not lose my sense of humor or my temper.” But course correction is part of the process. As time passed, I had to adjust that mantra. For the most part, I, along with my brothers Mike and Jerry, kept the laughter going during operation mom and Mike. Those two guys will make fun of anything! But I did lose my temper.
As I traveled the road from January 5 to June 24, I realized that sometimes we have to course correct and we shouldn’t be afraid to shift to meet the moment. Many times we lock ourselves into a position and hang on for dear life, even if we know what we’re doing isn’t working. But I wasn’t going to do that. Not this time. So I let go and shifted my mantra midway through the dark winter of 2008 to “I will not lose my sense of humor or my temper, except over the right things.” Sometimes a situation demands emotion. It is important to let others know you’re appropriately angry. Thus, I had to develop the skill of discernment. I had to learn to discern when was the right time to bring forth that big stick I was carrying. You can’t be afraid to shift your course if what you are currently doing is not taking you to the places you want to go. Stepping up and using your skills at the right moment is a huge asset. Awesome things can happen when you do.
I also saw a not-so-pretty repeating pattern of behavior of mine. I wasn’t happy or proud to see this behavior pattern, either. I tended to be an energy stealer. What do I mean by an energy stealer? I mean I would usurp the authority of others under the guise of being a helper. I wasn’t a helper. I was a control freak. There were moments when I would make a decision or take action because I wanted to help. But I didn’t check in with anybody before doing so. Thus, I usurped the power of others to make their own choices. If you’re a helper, make sure you’re helping and not stealing energy or being a control freak.
This behavior pattern of mine brought up the issue of discernment, again. Is this moment the right one to take action, to advocate for others? What am I trying to accomplish by doing that? I used to never ask these questions before acting. Now I first discern if the time is right for me to interject my big personality into the moment.
In the beginning of this mad journey, I was always engaging. I engaged because I am a helper and helpers need to help. That was a big mistake. I was always complaining about how I had to help everybody do everything. I was always exhausted because I was busy solving everyone else’s problems. As I pulled back, I was suddenly able to see how we get sucked into problems, dilemmas and crises that aren’t even ours to own. And it all starts when we open our mouths. As I watched mom’s and Mike’s constant bickering (and because they were in the living room of my house, it wasn’t possible to escape), I realized that they argued over the most insignificant matters. What was amazing is how highly emotional they allowed themselves to become over that small stuff because each of them wanted to be right. Their actions led me to enter into a silent period. I decided that there are really only two things that need to be said: I love you and watch out for that cliff! So when mom and Mike would go at it, I would say, “Hey, quit the bickering. There are only two things you need to say to each other and they are I love you and watch out for that cliff. Everything else is superfluous!” Of course, Mike couldn’t let that go. Occasionally he would tell me he was still looking for that cliff I kept talking about. Ha, ha, very funny.
"I would joke about this otherwise horrific situation, telling people that I had managed bad projects before and this situation was just another bad project."
It is an important life skill to recognize when you are caught up in someone else’s drama. I did not create the situation that was unfolding in my living room. I invited Mike and mom into my home. However, I was not responsible for their health problems. I didn’t need a lead role in this drama; I could watch and help from the sidelines. Realizing that the drama unfolding with mom and Mike wasn’t mine to own helped me remain disconnected from all the negativity and chaos. I could be a voice of reason in all this insanity. I wasn’t being controlled by the emotions surrounding the situation. Mom’s and Mike’s emotions weren’t my emotions and I didn’t take on their emotions. That was huge! By accepting that I did not create the situation, I gave myself the space to approach the situation with detachment (most of the time) and make good decisions as mom’s and Mike’s primary caregiver. That was the difference between reacting and responding. My life flows so much more effortlessly when I respond instead of react.
I also realized that “I didn’t create the situation” didn’t translate into “don’t lend a helping hand.” I was grateful that I was able to create a safe space for mom and Mike to do whatever it was they were going to do. And if my husband Jim and I did not hold the space for them in our living room, who would? It is just what you do in this life—take care of each other. Jim and I had the space and the money and I had the time. So we gave it. Who took the biggest hit as I laid the track for my ailing family members? My husband, Jim, and my two sons, Shep and Warren. But what our children learned from this caregiving experience has inspired them to be better people. Shep and Warren learned how compassionate their parents are. They learned that family matters. They saw firsthand how strong the will to live can be. They learned courage, strength and hope. They watched a miracle unfold. They watched their mother transform into a more peaceful person. They learned no matter how bad it gets, there is always ice cream to cheer you up!
I was also able to use these times to prepare our children for death. During the times when death seemed imminent for Mike, our youngest son Warren would worry about Jim’s and my death and what that meant for him. It opened up a conversation about the dying process that many families don’t get to have. I assured Warren that death was a natural part of life and all of us had a time to go. I told him death was natural because without death there could be no birth or rebirth. For the most part, none of us knows when we were going to die, but we all know we are going to die, so just make the most of the space in between!
Another insight I gained from this caregiving experience was that life is less stressful when we choose peace over being right. Sure I can argue with the best of them. I am a lawyer. Plus, I have the killer instinct so I am not quitting until I win. But that was the old Tomi. Of course I would win. But at what cost? The emotional toll it took on me to prove I was right and the ugliness I left in my wake wasn’t worth it. So now when someone wants to argue, even if I know they are wrong, I casually say “Is that so?” or “That’s interesting.” I might even say, “I am not invested in that so do what you want.” It took awhile to give up the “No way, you’re wrong and let me prove it to you” stance. But I am glad I did. It’s a lot more peaceful in my life now.
I also learned how important it is to share the load. I couldn’t do it alone and neither should you. Fortunately, I have a life partner who believes my family is his family. I never heard Jim say no to anything I asked of him. He was there to pick me up and to pick my family up. That level of loyalty and support made all the difference in what I was able to do. My brother Jerry would come to my house for weeks at a time to support mom and Mike, too. I never heard Jerry say no to anything I asked of him. His support created space for me to sit back for a moment and breath. My sister Janie also shared the load. She visited when she could and held the hands of Mike and mom when I couldn’t. I love them all for it. As a team, we made it work and Mike and mom are finally on the mend. Caring for aging and sick family members is a team effort. Reach out for the help you need. Doing so isn’t a sign of weakness, but a sign of strength!
It is worth it to make the most out of the space in between when caregiving for aging and ailing parents. There is nothing nobler than opening your home and your hearts and providing unconditional love to a family member who is probably scared and afraid and needs your love right now more than anything. Find the grace and the gift in every moment. Laugh at the silly stuff. Lose your temper over the right stuff. Ask for help. You can survive and thrive with a positive attitude! I know because I did it.