After a decade as a caregiver, I still work to find joy for myself.
We were together a decade when the fainting started. Alan was healthy. He was only 50. Why did he keep fainting? Tests. More fainting. Screenings. Months of agonizing waiting. Cancer. Getting Alan better was now our full-time focus.
I first met Alan at a bar. People always tell you can’t meet the right person at a nightclub, but when Alan and I met at Woody’s, I knew I met my husband. I made him laugh and he was my rock.
We had wildly different backgrounds. Alan was born in Haiti, came to America at three and grew up in New York City. He studied marketing in college and spent most of his career working for large corporations. I grew up in small town America, the son of a Marine turned factory worker and a school aide. I moved far away to study interior design in college and today run my own small business. Our personalities were wildly different too. Alan was reserved and quiet, and me, always the life of the party. But from the start, we were a perfect match. And we had 10 really good years.
After Alan was diagnosed with multiple myeloma, our relationship shifted from carefree couple to patient and caregiver, I was determined to keep the love and fun in our lives. I quickly learned the caregiver role is not just about physical care, although that is a big part of it, but it’s also about the mental aspect. I had to keep humor in our dialogue, I had to be as strong as I could muster…it was my job.
As a caregiver, my schedule was no longer my own. Though Alan was the patient, both of our lives now revolved around medical care, appointments, and waiting. I had to keep working, but I needed to be a nurse, driver, advocate, and cheering squad for Alan too. In the early stages of his multiple myeloma diagnosis, my sister relocated from Albany to Philadelphia to live with Alan and me. She became my caregiver co-pilot and I could have never made it through without her.
Alan and I married in 2013. There was no more time to wait. Our wedding day was chilly, we wore coats over our suit jackets, but it didn’t matter. Our love was official.
That multiple myeloma diagnosis took Alan on a painful journey with cancer and took me on a roller coaster ride as his caregiver. Multiple myeloma led to a stem cell transplant, multiple stays in the hospital, a devastating second diagnosis of large B-cell lymphoma, and finally to the aneurysm that took his life. His illness took place over the course of two and a half years. It felt like twenty.
We were married less than a year when I buried my husband.
Alan was 52.
A year after Alan’s death I was just starting to adjust to my new normal, when my sister and I got a call that our mom had an aortic dissection. My parents were still living in my childhood home, seven hours from Philadelphia. As soon as we hung up, my sister and I jumped in the car and started the drive that would start our next caregiving journey.
The medical team caring for our mom wanted to perform a major surgery, but having just lost Alan and knowing what caregiving involves, my sister and I made the decision to move mom’s care to an incredible medical team in Philadelphia where we could tend to her recovery.
My parents lived at my house for six months while mom recovered. My sister, aunt and I took turns tending to the physical aspects of mom’s care, but like I had done for Alan, I made sure mom’s life was still full of love and hope and fun.
My mom made the mother of all comebacks. Her health was completely back on track and after her surgery, mom decided she and dad were selling their old house and moving near her life saving doctor, my brother and sister, and me.
But heart trouble struck again. This time it was my dad. His heart attack has proven to be the start of a slow decline. My dad is slipping away. But he is surrounded by love and care.
As a caregiver I know I am fortunate. I am not alone. I have my sister, my mom and the help of an aide a few days a week. It doesn’t always completely erase the sadness, grief or stress, but knowing I have a team around me eases the burden of care. This experience has made me begin to think about my own long-term care. My parents will be gone. My husband is gone and though I may find love again, I would not want that person to become my primary caregiver. My sister has been a constant source of support, but who knows what long-term health issues are in store for either of us or if we could care for each other? I wonder, who will care for me? I have no children and my concerns, like so many in this nation, are about the costs, availability, quality, and viability of paid care at a time when I will need it. Unpaid caregiving is our nation’s present model of care and the economic and emotional toll are often too much for people to bear. We must do better by developing ways for people to plan for long term care-giving when family is not an option.
My mom and I have a lot in common these days. As we watch my dad decline day after day, I try to make it okay for her. I know the feelings of futility, resentment and guilt that come with caring for your loved one. I understand what it feels like to want to scream in anger and frustration, but needing to smile and offer words of encouragement instead. And I know what it’s like to get up every day and put one foot in front of the other even when you just want to give up.
I have been a caregiver for three people over the course of a decade and I can tell you that it’s the hardest job I’ve ever had. I was determined to keep Alan happy and laughing during his illness. The only way I know how to keep going is to maintain the same determination for happiness I had when I cared for my husband. I have now turned that energy to my mom and dad.
I don't always feel like that life of the party Alan first met all those years ago. But as a caregiver who focuses on keeping my loved ones happy, I have learned to find moments of happiness and joy for myself too.
Chuck Soldano, Vice President of the Board
OAK Street Initiative
Chuck is the owner of Work In Progress, Inc., an interior design, renovation and construction management company based in the Philadelphia region.
For more on caregiving in America, visit:
The Family Caregiver Alliance caregiver.org
The National Alliance for Caregiving caregiving.org
For more on being an LGBT caregiver: caregiver.org/search/node/lgbt