After Hurricane Sandy flooded Karen Bromberg’s elderly parents’ house, her roles as their caregiver kicked into high gear. It’s no wonder her motto is, “It is what it is, until it is something else.” Stay tuned for Karen’s new online resource for caregivers, helpyouthru.com, launching in April and inspired by her own experiences.

With what do you struggle? Feeling out of control. Nothing makes me crazier. I remember when I had to decide what rehabilitation facility my father would go to after he had his stroke. The fears. The questions. Was I picking the right one? Would they give him what he needed or would they push him harder than was good for him? Would he be able to return home? And if he could, what was life going to be like for him? For my mother? There were so many question and so few answers. It was the not knowing that was the hardest part.

What one thing do you wish you had more time for? Having quiet time to do things like reading and writing that center, ground and recharge me. They help me relax and refocus; it’s like taking a little vacation without having to leave my apartment. As all caregivers well know, we each have to find ways to replenish ourselves in order to be able to give to our loved ones. We each have to find ways to replenish ourselves in order to be able to give to our loved ones. #workingdaughter Click To Tweet

With what do you wish you had more help? It is so easy to lose sight of the simple day-to-day things we need to take care of, like cooking meals and cleaning the house, when we are in the throes of caring for others. What helped me was to first bow to the fact that I couldn’t take care of everything and once I did that I was able to hire someone once a month to clean my apartment and call in food orders from my local grocery.

Where do you find support? My husband is my greatest support. I don’t know what I’d do without him. He helped me when my father had his stroke 17 years ago, when my mother was in the hospital with a life-threatening infection several years later, and when I needed to get my parents onto Medicaid and into Assisted Living after Hurricane Sandy hit New York in 2012. He is my rock. I am so lucky to have him.

If you knew then, what you know now…I’d have had a sibling. Being an only child caregiver isn’t a bear; it’s a grizzly bear.  All decisions, responsibilities, appointments, paperwork, falls to the only child because there is no one else. Being an only child caregiver is overwhelming and it’s lonely. It makes me jealous of those who have siblings. In my only child fantasy world, siblings work together, they help one another out; they support one other; they care for one another and they split whatever needs to be done.  But, it’s more than that. In addition to siblings sharing the same set of parents, they also share a history. They can look at their aging parent and remember them in their younger days, they can see them not being able to walk across a room and remember the able-bodied mother or father they once had. Only children can’t do that.

What is your dream retirement? I’d love to travel more. There is nothing more exciting than going to a place I’ve heard of but have never been.

What would you like to see employers do more of to help caregivers? There are many things employers can do: flexible schedules, working from home via telecommunications are two and they are important, but I think what has to happen first is for the employer to have an understanding of what the caregiver’s life is like. On-site roll playing could help with that. It could sensitize the employer as to what faces his or her caregiver employee when the workday ends. It’s the old “walk a mile in his shoes” kind of thing, creating a kind of empathy on the part of the employer.

What would you like to see medical professionals do more of to support caregivers? There are so many things, but I’m just going to touch on just one – HIPAA (the Health Insurance Portability and Accountability Act), which was enacted in 1996. Caregivers are no doubt acquainted with HIPAA. The idea is to safeguard patients’ medical records, which I applaud. The problem, as I see it, is the way it’s practiced.   I remember times when I’ve called physicians only to be told that they could not talk to me. My parent had not signed a HIPAA release form. It infuriated me when I was told that. Not only am I their daughter, I am also their health care proxy. How am I supposed to know what my parents medical conditions are if the medical professionals won’t/can’t tell me? I’m not sure how this would work but what I would like to see is an amendment to the existing HIPAA guidelines that is specific to caregivers. I would like to see physicians allowed to speak to caregivers without getting into hot water, thereby avoiding the anger and frustration most caregivers have experienced.

What do you admire in/about other caregivers?  Their love, patience, devotion, concern and caring, their seemingly endless energy, their good humor and cheerful demeanor.

What is your motto? It is what it is, until it is something else. It is what it is, until it is something else: Karen Bromberg #workingdaughter Click To Tweet

What is your superpower? I guess the ability to see what needs to be done, and then just doing it. It’s what prompted me to create helpyouthru.com, my online resource for caregivers, which I am very excited to say, will launch in April. What gave me the idea was my experiences during the early stages of getting my folks onto Medicaid and into an assisted living facility. I went online, needing resources quickly. I was stressed. I was tired. And I didn’t have a lot of time to surf the web. What I found was that while there were resources, I ended up spending hours trying to find them. I put information on my website that I needed but I also anticipated what others might need, as well.

Caregiving: a blessing or a burden? It’s a blessing, and burden. You can’t separate the two. Maybe a better way would be to say that caregiving is a blessing because it is a burden.