When care and support are needed

What literally started as a pain in the shoulder, arm and neck turned months later into rotator cuff surgery. While the outpatient procedure itself required treating me like dry wall and inserting anchors, the anticipated pain after the nerve block wore off never really materialized (thankfully). Now I face months of physical therapy to regain use of my dominant arm. Not uncommonplace, but certainly disruptive.

Leading up to the surgery, I did what I always do: research. I found a Facebook group for those facing or having undergone rotator cuff surgery and got a picture of what to expect. The surgeon, too, armed me with information. “Get an ice cooling machine,” he said. It would reduce swelling, offer pain relief and facilitate healing. From the group and from him I learned that insurance does not always cover the cost of rental or purchase. Mine didn’t (I called to check). I also researched prices to buy (pricey!) and if local businesses would rent out (couldn’t find). I turned to Facebook moms groups I was in to see if someone had one to lend, and thankfully, one mom did. I also had heard horror stories regarding surprise third party bills and decided to get clarification before the surgery. It took me several emails and phone calls, some giving me incorrect information and others dumping me into voice mail boxes that were full, before I could determine that the anesthesiologist was indeed in network for me (whew!).

The group I joined on Facebook helped me prepare in other ways too – what to expect emotionally, kind of clothes to have on hand, how to sleep, how to manage pain – and it continues to assist, as I begin to navigate a world of limited functionality and months of physical therapy. Still, the most important support I have comes from my husband. I’d written before about he is my bashert and about how we fill in each other’s gaps while simultaneously fitting together on everything else. Considerate and thoughtful, from keeping the ice machine full of ice to helping me keep track of medicines to cutting my food as I maneuver the world one-handed, he has been incredibly helpful and supportive.

When I wrote about our wedding last November and about how family is important to both of us, I expressed how sad it made me to think of people who’ve had relations with family cut off. What this surgery reinforced for me – and it’s something I’ve seen over and over when family and friends have faced complicated medical issues – is that going this path alone is something no one should ever have to do. Whether by choice or not, people without family or close friends, especially older folks, all need someone to be present for doctor appointments to listen, take notes, ask questions. Every patient needs help coordinating what happens after they are released from the hospital. Whether it is heart surgery or a stroke, a tumor removal or a gallbladder removal, there are different kinds of specialists, therapies, follow up appointments and tests, to be scheduled. Sometimes the home needs to be adapted to be safe. Equipment, supplies and medicines for the home may be required in advance; some may also be incredibly useful – if only the patient has knowledge of its existence, knows where and how to obtain and has the ability to actually get it in his or her hands.

I remembered in Israel after I’d given birth, I borrowed breast pumps from Yad Sarah and thought the organization the most brilliant thing I had ever encountered (still do). Among other things, it lends medical equipment so people do not have to buy. At the time, I worked at Hadassah Hospital at Ein Kerem and saw first-hand how patients after surgery often need equipment temporarily. Yad Sarah fills an important need; not everybody can afford the hundreds of dollars needed to buy or rent equipment that is likely to only be needed for a limited amount of time and then be retired. I do remember leaving my security deposit as a donation and feeling privileged to be able to contribute to their useful purpose. Another option, and one I didn’t think to look for prior to my surgery in the United States, are medical equipment gemachs. These independent free-lending groups are options in some places (just found these North American lists for those wanting to research further, one, two). Gemach, an acronym for gmilut chasidim, “performing acts of kindness,” is a very helpful option for those aware of them and exist in different forms – for loans, wedding dresses, medical equipment and more.

Home care coordination may be offered by private companies or perhaps by hospital social services. Or maybe even by insurance company advocates. Medicare offers lists of resources too, but not a single person to take over. Yes, resources may exist, but someone overwhelmed by his or her medical condition may not have the wherewithal or the ability to track down all the moving parts, let alone think of what pieces are missing.

The issue of who oversees it all, not only from the bewildered patient perspective, but also from the medical side is one I’ve been puzzled over too. In hospitals, patients have the surgeon, the doctor on rounds and various specialists coming in and out. For a son with a rare tumor, even the specialist rotated depending who was on shift and I seem to recall a lack of consensus on medication among them. I couldn’t see who was running the show. While the primary care provider might seem the natural option post-release, he or she is not involved during the process and hasn’t been part of decisions. Even more relevant, the doctor may not even have all the medical records if the patient hasn’t requested their release. In the absence of coordinated wraparound efforts by providers, insurers, regulators and patient advocacy groups, piecemeal and inconsistent is all we have. Support without a uniform and joint methodology is a crapshoot.

Hospitals may provide folders with pages of information, but who makes sure they are followed through? I don’t know the solution.  Patients need assigned advocates along with simplified checklists, to help them tap into resources and ensure nothing is missed when dealing with chronic conditions as well as before, during and after crises, treatments and hospital stays. They need someone to hold their hand. Especially if they are alone.

I am beyond grateful for my inner researcher’s need to gather knowledge, for the ability to carry it out, for the support of my better half, but I worry about those who do not conceive what they may be facing and do not have the caring support system in place they need. Not letting them fall through cracks only emphasizes the fact cracks – and not complete support systems – exist. How do we change that?