How would you react if your loved one suffered from an irreparable disease? Would you stay? Would you leave and try to find a better way? Such were the questions staring Suzanne Mintz in the face when in 1974 her husband was diagnosed with Multiple Sclerosis. In the interview below, Suzanne takes us on her special and courageous journey through the fear of what it means to care for a loved one with disability.
Ishita: What does being a caregiver mean to you?
Suzanne: It signifies commitment to another person whom you already care for. You commit to aid them in the ways that you can, to overcome the difficulties of their fears and burdens, of having a chronic illness or disability or ageing.
Ishita: Did you find that being your husband s caregiver changed the dynamics of your relationship with him?
Suzanne: It certainly changes it. I have heard myself say, I'mnot sure I know what a normal or typical marriage is. And that s because of the nature of the care that s provided changes the dynamics between us. I think it's important to actually make a choice. We take on care giving because situations arise but we often times, we don't stop to ask ourselves, Do I want to be doing this? How can I preserve a part of me while I do this? And the act of saying, Okay, I am consciously taking up this role is very important, because it removes any sense of victimhood. When we take our marriage vows and we say in sickness or health , we're not thinking about care giving in the future. In fact, people never lived this long a few decades before this. They never lived this long before with such serious conditions.
Ishita: So someone who finds themselves in a care giving position has to consciously think about whether or not they really want to take on the responsibility in the sense of a job.
Suzanne: Yes. It changes the way you look at it if you consciously say Okay, I'mhere by choice versus I have to be here irrespective of what I want. People don't necessarily think they have a choice but we always do. Knowing this gives you a sense of control over something that is uncontrollable, if you will.
Steven and I were separated twice before. So coming back the second time together was really a choice for us. And when I came up with this concept of choosing, I did say to myself, I am choosing to be here. I am choosing this. It was because of my love and desire to be with Steven. Although, I have to say that initially I did feel victimized.
Ishita: That something was being done to you.
Suzanne: Yes. At the time, we were at a stage in life when we were really spreading our wings, and then all of a sudden the disease unfolded. Call it the fate, call it God s wrath, call it luck of the draw, it was something that happened to us that really turned our lives upside down. There was a lot of heartache and a lot of it was a growing process.
When Steven was first diagnosed it wasn't like he couldn't do anything. It was not like he suddenly had a stroke and was in a wheelchair. All of that came gradually. It was the emotional impact that first caught us followed by the physical.
Ishita: Did you seek external help?
Suzanne: We did have a housekeeper at the time. But they didn't help with Steven s physical care giving. Around that time, we started renovating our house and had to move out for six months into a one bedroom apartment. So it was I, Steven, three wheelchairs and a cat in a small apartment. It was a convenient, cute little place but still an additional strain after all. When we got back home, I told Steven that I couldn't do it anymore. I didn't want to do it anymore that I needed external help. He was supportive. The next day, I started looking for help.
Ishita: I want to ask about your own fears in this process because I come from a care giving background; myself and my family took care of my dad s sister who has been paralyzed since she was 19 and lived with us for over 25 years. She was more physically challenged than mentally, but the disease process did take over her mind. I was her sole caretaker for a year at home without external help, and during that time, I had this fear of and this might sound selfish not being able to get out of the situation. I was around 24 or 25 and despite my desire to help, I felt stuck, like this wasn't what I was supposed to do forever. It seemed my immediate family understood this, but my extended family didn't show it even if they may have felt it.
Suzanne: It isn't selfish. Not at all. It is self-preservation and you can't live care giving 24/7, all the time. it's just too hard. Needing time for ourselves is built into our system. Think of it as sleep you must have it. it's okay to ask for some self-time because otherwise things become extremely overwhelming. Different fears can creep out depending on the person who is providing care. Some common ones are: How long can I do this? How can I afford this? What about me? These are all very common thoughts. it's perfectly okay to have them.
Ishita: How did National Family Caregivers Association (NFCA) come to be?
Suzanne: Well it was sort of serendipitous. My friend Cindy and I went to the beach for a restorative weekend. At that time, she was caring for her mom with Parkinson s but we never really talked about care giving before, thinking that our situations were probably different. The diseases were different and the relationships were different, but during that weekend, we realized that there were also so many common issues that the two of us faced and shared. We saw that if we were thinking and feeling this way then there must be a lot of other people in the same position. And there wasn't anything specifically out there to support family care givers like NFCA does.
Our initial thought was to start a newsletter, which was how Take Care came to be because Cindy s a graphic designer and I'ma writer. But after a relatively short period of time we realized that if we needed to make a difference, it had to be more than just a newsletter. We got some pro bono printing and released the first issue, but then realized that the initiative would best be structured as a non-profit venture. And one thing led to other as it often happens.
A friend at a law firm helped to do the paper work for us. Because we were a non-profit, we had a board and one of our board members introduced us to a woman who said, No one is going to know what you re all about if you keep calling yourself Take Care. You should call yourselves something like National Family Caregivers Association. And we said, That sounds great! The board liked the idea, we took the preposition out and officially became NFCA. At that time, we still had our fulltime jobs, we both were care giving and Cindy had kids at home. We started working late evenings and weekends from my basement and hired a part-time administrative assistant to help us.
After four years of that, I decided to make NFCA my career. It had become a passion.
Ishita: So how was the start of building NFCA. Was it tough to build and work in the way you were already caregiving, working, and with kids?
Suzanne: Absolutely. It was a real struggle! We had some extremely lean years but continued to grow in other ways, through reputation and activity, even if we weren't growing in resources. Initially, we started without the knowledge of how to run a non-profit and were really winging it. But we looked at even those weekends from the basement very professionally. Later on, we hired a Chief Operating Officer and a Director of marketing and development and an Executive Assistant so we grew from four people in the office to seven people. That was a huge change.
Ishita: What would you say is the most helpful tool in building a start up or your own company, be it for profit or non-profit?
Suzanne: I think it's really helpful to build a strong board. it's important to put some plans in place first and succeed in something. We didn't do any of that! We just grew organically. But that s not what I would advise somebody to do. You have to legally have a board but it can also be a major player in how you grow. Its job is to provide advice; its job is to help you raise money. No boards are good at everything, but a really strong board can help move an organization forward.
About Suzanne Mintz
Suzanne Mintz is a family caregiver for her husband, Steven, who was diagnosed with Multiple Sclerosis in 1974. Her long-time personal involvement with care giving led her to the conclusion that chronic illness and disability affects the person who provides care as well as the one that requires it. She realized that family caregivers are part of a “silent and neglected workforce” that does not receive the recognition, training, support, assistance, or public policy attention it deserves. As a consequence she co-founded NFCA in 1993. Today, she spearheads the organization’s efforts to meet the unmet needs of family caregivers.
Featured photo by Pink Sherbet Photography.