Sandwiched Support

Tag: health

  • June 12, 2025

    Delegate?

    While sandwiched it’s wise to ask for help if you can. Or to hire help if you can. Or to sometimes squeeze a little support out of those you are supporting. I haven’t had a lot of choices in this department for the big things. As an only child, unless my husband feels like stepping in (especially when it comes to medical advocacy for my parents) it’s me. No one to volley to. I am, however, blessed with medical professionals on both sides of my extended family and among friends who are only a text or call away and have been absolutely invaluable primarily from a distance. But basically when it comes to certain things, it absolutely is me and only me.

    With the kids there are more takers. My in-laws have had them often and even my parents can and will still do what they can. Dad helps with some of the morning and afternoon routines and one incredibly significant help my Mom provides, even when she is not feeling great, is securing my daughter’s hair in whatever style has been assigned for her dance performance. Securing bobby pins in a style just right is not in my wheelhouse. Never before have I heard more about how I should hire people to do more for us. Um, that’s quite complicated when it’s just not affordable or when tough choices would have to be made in order to sub something out. There are some things that are tough to sacrifice, especially when we work as hard as we do, volunteer, care give. advocate, and taxi everyone around while bringing the fan club energy.

    At the times when I cannot get help I keep going because it has to get done. I try to hydrate, caffeinate, increase protein, and give myself little breaks when it works. But it is honestly the case that sometimes So much is back to back and nothing is as expected and it’s just one thing after another without the opportunity for a break. In these trying times I am asking myself, “Does it have to be me?”

    Sometimes it’s simply an annoying choice of whether or not we are going to miss out because I cannot be in multiple places at once and my husband is working or he is declining to help because it is not something he values (usually something fun with the kids that costs money). Other times we are all driving kids around at once, including my in-laws. And yet other times, I am driving 5 minutes home to catch up on work notes because three of my family members are already volunteering at the event we ran this week for kiddos and I have already done my part. The guilt sets in, questioning whether I should stay until the end, but it is all running like a well-oiled machine and I am able to step back and get something accomplished in a quiet house for a short time.

    There are volunteer commitments I am seriously thinking of bowing out of because others can and they may not if I don’t step aside and leave it to them. There is so much I want to do but the sleep deprivation is catching up and I am not close to bringing my best to my family and loved ones when I am hanging by a thread. So often there is no rest for the weary, especially caregivers, but other times there are possible escapes, possibly ways to pass on something or pass something on.

    If you can, hand it over to another willing supporter. If not, consider if it’s something that, if dropped, will not necessarily lead to significant long-term issues. Sometimes when you stop filling a need, someone else steps in that would not have.

    And sometimes you just have to step away while everything’s ok. Close the laptop and go get some sleep. Turn around and exit in order to wrap up some work tasks. Take a couple of hours to go do anything you feel like doing while all is stable and everyone is occupied.

    It’s fine until it’s not and when there is some flexibility in terms of who can take care of it, try not to have it be you again. Aiming for self-care is a whole other level of complicated, here we are aiming for some self-preservation by doing what is needed and ducking out when you were expected, but someone else can and will pick up the slack if you don’t.

  • June 11, 2025

    2 Midnights

    This week’s posts have been about overload and that’s such a significant part of the Sandwich generation, but today I want to highlight a stand out experience with the hospital system this week that I truly hope can help others better advocate for their loved ones.

    We got to work with the Medicare 2 midnights rule for the first time this week with Mom. We are learning to find our way with very little guidance through a system that seems to be the furthest from user friendly. Let me be your guide as you prepare to support your loved ones in the future!

    Long story short this time it was a large blockage much further down than recently and I just don’t know how that happened because she’s been on a liquid diet. The surgeons said earlier yesterday that they could admit her to an observation area of the ED and get her bowel regimen figured out, but that they are still not going to operate at this time and the plan remains the same (go home on liquid diet and await elective surgery probably in August).

    BUT I didn’t realize (and THANK GOODNESS my husband understands this insurance stuff better than I do and was paying attention), that she was STILL in the ED last evening and it had only been ONE MIDNIGHT! I talked to a Utlization Review expert who works for the big hospital and she confirmed (which my husband suspected) that if we picked her up before midnight last night, which we did, it’s before the “two midnights rule” so then she DOESN’T lose her 3 weeks at home!!!!!!!

    Let me explain- Mom’s Medicare plan has a certain number of inpatient stay days. These days covered her many inpatient hospitalizations and also were used anytime she was in an intensive rehab instead of going directly home from the hospital with home health or instead of going to a skilled nursing facility for rehab (this is billed out of a different “bucket” of Medicare funds). We knew very little and along the way one of the small hospital’s staff members (I believe a social worker, but I have no idea who it was) told me that inpatient days were unlimited so I fought hard for Mom to stay admitted through an infection and unexplained pain and several stretches of time when she was unable to eat. If I had known we were burning through limited days I would have handled things differently. She certainly should have been in the hospital during those times, but it’s clear that we cannot always get and maintain the care that is needed for as long as it is needed. There are definitely limits. I also was under the impression that the intensive rehabs were paid from the same bucket of as the skilled nursing facilities. I also spent an hour and 20 minutes one day not long ago on the phone directly with Medicare during this journey and was given completely wrong information after a long conversation where I asked very specific questions, sharing my knowledge and Literally having someone who works for Medicare stating the complete wrong thing about my Mom’s plan and which parts of Medicare pay for each level of care. Because she used so many inpatient days or days that count as inpatient (part of this was after a surgeon nicked her and she had to go on a wound vac, prolonging her inpatient stay days) she is now well into what are her 60 lifetime days for inpatient and once those are gone, they are gone. The other days will re-up every time she is able to be home for 60 days straight. Being in a skilled nursing center for rehab, while out of the hospital does not count as being home. So even though she had no readmits for more than 20 day while in her second skilled nursing facility for rehab, none of those out of hospital days counted toward the 60 at-home days she needs to put together for her inpatient days to re-up.

    So yesterday I figured this out at like 4:20 PM when my husband re-explained it (we’ve never been able to discharge ahead of the two midnights while still in an ED before) so I started frantically calling the staff at the big hospital, and after talking with like 5 people I got my message across and I spoke to the surgical team and they said if she ate her liquid dinner without any problems they would check on her after dinner. It worked out and my husband and I were able to go get her. She was still on Medicare Part B so we are still on 3 weeks at home and counting as we try to get to 60 days straight at home for Medicare A benefits to re-up. Shout out to my mom’s AMAZING first shift nurse yesterday in the ED who sprung into action when I called and got us Everyone’s attention that we needed to get her out and home in time. Now we wait and hope again and it looks like home health can restart pretty seamlessly!

  • Friday Refresh

    May 30, 2025

    Week 2 with us is in the books! Mom will be home post-most-recent hospitalization for 2 weeks on Monday!

    Here’s a refresh on this week’s topics and some relevant questions: I ran through some lessons learned and tips related to Medical and Surgical teams and consulting specialties and shared potential issues related to getting a clear diagnosis while seeking effective treatment. I also shared some info regarding different types/levels of aftercare and spoke at length about our experiences with ways patient treatment compliance impacts admissions to aftercare. For discussion I am wondering what can be done to improve individual patient care from diagnoses, to treatment planning, to discharge with aftercare. I would also ask what can be done to assure that all aftercare facilities reach higher standards? Additionally I am very interested in knowing more about what happens to each medical facility, team, and provider when a patient is repeatedly readmitted, when errors are made, or when there is an infection post-procedure? Can managed care also offer some kind of incentives for hospitals, care teams, and providers who end up helping those who are medically complex to truly make progress? Can providers and their team members tell the patients and their families more about what managed care is doing that limits them? Might knowing more about the penalties the hospital and providers are facing bring a better understanding of the conditions they are operating under? Ultimately, how can providers and their teams better work as a team with the patient and patient’s loved ones to improve ultimate outcomes?

    Fun Facts about the Founder and Family: We celebrated our family Christmas with blogger’s parents in March this year during a brief period of Mom being home from the hospital. The decorations stayed up from November to March and were both a bright spot while celebrating and a conversation starter when people stopped by. Mom’s favorite holiday is Christmas and her decorations, most of which were purchased in her 50’s and 60’s while she was an avid yard saler and thrift store treasure hunter. Her holiday colors are gold and forest green and her stately tree stands tall in the formal living room. Blogger decks the halls in blue and silver (much of which Mom found for her on her quests for steals and deals). When our large household comes together we are often

    Key Takeaway: As always please use this week’s posts to start helpful conversations with your loved ones on these topics. You are also encouraged to begin thinking through who you will likely be advocating for and how it will look as you support them. Who can advise and support you through it? When it comes to aspects that you have some or total control over, how do you prefer to handle it? What does your loved one think?

    Visit here often as we seek to Make It All Make Sense and at the very least support each other along the way.

  • May 29, 2025

    Aftercare Right After

    Upon leaving the inpatient level of care, if your loved one needs additional care for physical health issues and rehab there are few options if managed care is covering the cost and there are certainly differences between facilities at each level of care.

    Skilled Nursing Facilities: These are the regular nursing homes. Many of them provide rehab these days and when your loved one requires two to three people assisting them, as Mom did for a time, and is only up to participating in PT and OT a little each day, they will meet criteria for this level of care. The good news is that with Medicare Part A a stay in a Skilled Nursing facility comes out of a separate “bucket” of days than the inpatient hospital days so they do not run out as quickly (more on this later). Even more good news is that some skilled nursing facilities have rehab hallways where those who are there for a temporary stay can live temporarily and, dare I say, sometimes things seem a little nicer there.

    Intensive Rehab Facilities: I was always ready to beg to get Mom into these facilities as they are the super nice, shiny, multidisciplinary treatment team guided superstar places to go for rehab after being in the hospital. They have fully equipped gyms and many highly trained professionals ready to get a person back in tip top shape. The good news is that when a patient has to go to a skilled nursing facility first to become strong enough to hang with 3 hours a day (split up) of PT and OT, the patient can, when ready, graduate up to admission to one of these facilities. More good news is that they work with patients as much as they can through their tougher days and often PT and OT can be all about ADLs, basic at home tasks, and walking if that is what your loved one needs. The bad news is that these facilities count to Medicare as just like being in the inpatient hospital. Your loved one will continue to use up their inpatient hospital day allowance from Medicare by being here. This I found very confusing because it’s a more intensive program than skilled nursing and people have to be more able-bodied to go there and when they are sicker and need more support they have to go to skilled nursing. Mom had burned through tons of days before I was informed that this level of care counts the same as being in the regular hospital.

    Specialty Hospitals: Mom entered one of these facilities, equipped to handle medically complex cases and mechanical devices, following a surgeon’s error that put her on a wound vac. This level of care is very much a hospital with low-functioning patients. Mom was able to get PT and OT at this facility and excellent care of the wound vac, but again we burned through inpatient hospital days from her Medicare allowance quickly having her there. It was the best available choice at the time as the small hospital’s caseworker was shoving us out the door offering open beds at two 1 star skilled nursing facilities and a 3 star skilled nursing facility which was an hour away. We quickly seized the bed at the specialty hospital for which Mom only qualified because of the wound vac and sadly were thankful that we were not worrying about her during a 1-star nursing home stay.

    Home Health: If your loved one can come home directly from the hospital but needs ongoing support and has a great deal of difficulty getting out to outpatient appointments, home health will come to your home. You get a nurse a couple of times a week, sometimes PT and OT if ordered, and sometimes a social worker and others with physician orders. Depending on the agency sometimes visits are inconsistent and unfortunately the staff has to work more around their schedule than yours because of driving around to multiple patients. After Dad’s heart attack and quadruple bypass a few years ago I was very thankful for home health’s visits, especially because his home health treatment team came with a nursing assistant who helped him with the first few at home showers for which I am grateful. The home health team we have had a few rounds with now did not have a nursing assistant on staff. Be aware that having home health rotate through involves some brief check-ins and short sessions of support. This will not substitute for support for your loved one with meals, laundry, help in and out of the shower or while dressing, and any other day to day or overnight care needed. If you hope for your loved one to live at home and that is what they want also, have the conversation early and often about who will step in and do what to provide support or even care, to take your loved one to appointments, and to coordinate care and advocate as needed.

  • May 27, 2025

    Infection or Inflammation

    Mom was in the hospital for about a week following a seemingly successful initial surgery (the initial surgery of this journey). She proudly shared and continues to share with providers and anyone who will listen how she managed to get through 75 years of her life with only wisdom teeth surgery. Now she sported a vessel loop closure, something new that allowed the incision area to be pulled together gently and gradually and after about a week post-surgery (and my difficult first encounter with who was to be Mom’s next surgeon) she was deemed ready for discharge to her very first experience with a Skilled Nursing Facility for rehab. It was all of our first experience with a real nursing home for anyone in my parents’ generation. Most recently I visited two of my husband’s grandparents in nursing homes and quite frankly I had moved my parents in in part to avoid setting foot in the awkward sadness that I have experienced in many of those facilities.

    Unfortunately it quickly became clear that the staff at this first skilled nursing facility Mom was discharged to for rehab, did not appear to know how to care for her incision area as a whole, a process called “flossing” the vessel loops. The nurse practitioner who oversees the skilled nursing facility where Mom was admitted completely geeked out over the vessel loops saying he had not yet seen any and was very interested in getting to see what we assumed must be one of the latest ways to close a surgical incision in person.

    Fast forward approximately 4 days later, Mom was right back through the ED with a fever and full-on infection of her Mesentery. Infections are a natural risk of surgery I have been reminded ad-nauseum and also the “flossing” logs from that initial facility show that if the nursing assistants or nurses or anyone else on staff there were flossing the vessel loops as often as they were supposed to be flossed they were not documenting doing so. I suspect the reason for the lack of flossing was that probably literally no one trained them to do so. I wonder if they were even all told about it, especially since Mom arrived on a Thursday night and was out the door with an infection by Tuesday. Between Dad and I we visited every day while Mom was in the initial skilled nursing facility. I introduced myself to the charge nurse admitting her, to the nurse practitioner, to the OT (was thrilled to see her there Friday morning, a fellow school district mom and friend), to every nurse, to the Social worker, to the head of PT. We stayed close and made ourselves visible (which I recommend that you do), but there was still what I would refer to as a shortage in services particularly over the weekend.

    Thankful Mom got a bed there when she did at a facility rated with 3 Medicare Stars. The 4 star facilities and one 5 star would not or could not take her for various reasons which I will describe further in future posts. Keep at the forefront of your mind that if your loved one needs aftercare it is not always easy to come by and the fact that it’s complicated is a gross understatement, especially in the case of a medically complex situation.

    I am certainly not stating that the Mom’s first 4 days at a skilled nursing center or anything that happened there were to blame for the roaring infection she went back into ED with. Mom’s case is medically complex and the makings of an infection could have started during or soon after the surgery or during her week of recovery in the hospital and we will never know the cause for sure. However, what I am saying is that I strongly suspect that the surgical team who placed those vessel loops and then monitored Mom through discharge did not adequately make sure they communicated how to floss those vessel loops to the actual staff members that were going to be flossing them. Again, correlation does not mean causation, but what might be on your loved one’s discharge plan that is not being carried out by a third party caregiver correctly and could this be because of a lack of thorough communication?

    Hospital Hints:

    Maybe things are missed every day on discharge plans that are of no consequence, but I urge you as your loved one’s advocate to familiarize yourself with the discharge plan and how each direction is to be carried out and by whom and follow up to make sure things are being carried out as intended.

    Also, did you know that hospitals and physicians can be penalized and sometimes not paid by Medicare and other managed care companies if their patients end up with an infection or if they are readmitted for that or another reason? I am just learning this and know very little about it as of yet, but what I will tell you is that for one month a team of surgeons and their residents did not miss a beat repeatedly insisting that Mom’s diagnosis was “inflammation of the messentery” and Never Ever Ever Infection. Her admission paperwork in the ED says sepsis and she was being treated prophylactically with antibiotics as she had a fever and an elevated white count. For days, weeks, and ultimately over a month they could not get the infection under control and involved Infectious Disease who was treating my mom with multiple antibiotics, but as the family member when I asked if my mom had an infection, the surgical team always said “no inflammation.” Multiple surgical residents and surgical attending physicians at the small hospital said that for them to diagnose my mom with an infection they would have to open her back up surgically and take out a sample of the inflamed area and send it to pathology for a test to officially say she had an infection. From steroids or other autoinflammatory meds to muscle relaxers and GI medications, and even some pain meds they prescribed one thing after another to try to get my mom’s pain and other symptoms under control. But I will never forget how they looked me straight in the eye for a month and spoke to me by phone for a month and told me that my mom had inflammation, but no infection while she was being treated with antibiotics by Infectious Disease. It made me wonder how in the world I could trust anything else they said. I certainly tried and some providers and residents were more attentive than others as they attempted for weeks to find the right plan of care, but that ridiculous claim of inflammation felt so very false so just know that that’s something out there that you might encounter. Someone who works for that small hospital told me they get in trouble if they call it an infection. Someone else told me the protocols have something to do with preventing the overdiagnosis of infections or incorrect diagnoses of infections as it was something going on during Covid. But what I will remember forever is feeling so in the dark while surgeons I’d hoped to trust and their residents kept making statements that felt like gaslighting.

    Pro (amateur trying to become pro) Tip: Talk to many different people in the medical field who you know in your personal life (if you are blessed to know them) and ask lots of questions. Ask for their recommendations, ask for their point of view, and ask them which questions you should be asking the doctors, which ones they would ask if it was their loved one. If things get medically complex show your loved one’s scans to those who are trained to read them and continue to gather lists of questions to bring to the treatment team.

  • May 26, 2025

    From Farm to Straw

    Today we honored those who made the ultimate sacrifice for our freedom by spending time with our loved ones enjoying our freedoms. Our kids picked the strawberries my in-laws grew on their farm and there were plenty to blend into the smoothies for Mom as she celebrates one week free from hospitalization (again) and continues to persevere on what is to be a 3-month liquid diet as she awaits another surgery, this time at the larger hospital.

    This week I have plenty of thoughts for you on seeking a diagnosis and an effective treatment plan when the plan is not yet clear. For Dad a few years ago he felt very low energy with discomfort in his chest. He believed he had COVID until my mom thought something wasn’t right and had him call his PCP. His PCP thankfully diagnosed him over the phone based on what he was telling her and called an ambulance for him as she strongly suspected he had had a heart attack the day before. She was right. His diagnosis was straight forward and he underwent a quadruple bypass surgery very soon after that.

    With Mom’s first hospitalization in recent years she also received a clear cellulitis diagnosis (a skin infection) and shortly after that an amazing provider from Infectious Disease at the small hospital became involved and a month of treatment with antibiotics ensued which cured the infection, but ended up impacting her kidney function. When she was hospitalized a second time about two years later she entered through the ED at the small hospital emergently by ambulance with a severe hernia and extreme pain which turned out to be a full bowel obstruction both of which led to emergent surgery.

    Hospital Hints: In the ED a provider (sometimes a nurse practitioner or a physician’s assistant) will triage your loved one and, once determined to be stable enough, you will then wait (sometimes for hours) to be seen by the ED docs. Then if your loved one needs surgery they will typically be assigned to the service of a Surgical Team. When communicating with the hospital staff you will want to ask to speak with the Surgical Team which includes all of the residents and attending physicians on that Surgical Team and could include a nurse practitioner or physician’s assistant. If you continuously ask for the Medical Team (as I did) you will be incorrect if the surgeons and surgical residents are the ones overseeing your loved one’s care. Also, a special tip from me, no matter how many times your loved one has been readmitted, don’t be dismissive with the ED docs because you’re waiting for the surgical team because you believe that’s who you need and that the ED docs won’t be doing anything anyway. You never know what they are noticing and finding.

    In Mom’s case over months in and out of the small hospital, the teams passed her from one to the other. What you as an advocate can best hope for is one consistent treatment team to follow your loved one until treatment is complete or they can be discharged to a lower level of care. Consults with GI or Nutrition or other specialties can be extremely helpful, but passing the patient repeatedly back and forth from the Surgical Team to the GI Team to the Internal Medicine/Hospitalists for observation can be very confusing for the patient, the patient’s support system, and the overall treatment plan.

  • May 22, 2025

    Hospital Hint: Leave a Voicemail with questions for the RN Case Manager first thing in the morning if that individual appears to care

    I am trying to recall when I learned that Mom was not only assigned a social worker/case manager/aftercare planning extraordinaire, but also was assigned an RN Case Manager. I am deeply grateful that this position exists as it is a registered nurse (someone clinical who understands at least a significant amount of what’s going on medically) who participates in the medical team meetings regarding your loved one’s care. Get this person’s business card or jot down their phone number and extension ASAP. They are able to both send direct messages to the providers through a staff chat feature AND they sit in the treatment team meetings. If anyone is going to share your questions with the providers AND get an actual response, it seems it will be them. Our first RN Case Manager taught me that Mom did not have a Medical Team treating her, she had a Surgical Team treating her. She provided me with a number of correct terms in a supportive, respectful way.

    My understanding is that the bedside nurse, case workers, PT/OT, residents, and others have some access to the chat with the doctors, however the doctors (especially the surgeons) can be slow to respond. It is understandable that they are busy and the surgeons are often in surgery, but having a Nurse Practitioner or Physician’s Assistant on the team who can receive calls from family members and advocates is incredibly helpful and that option is not put into practice enough. During one lengthy hospital stay at the smaller hospital I did get a Nurse Practitioner who works with the surgeons to call me a time or two, but I don’t remember receiving helpful answers from those calls. The first RN Case Manager we had, however, communicated every question I had to the team and called me back with every answer she got. There was a time I was leaving her a message nearly daily for weeks with questions I came up with by tirelessly texting wonderful people I know who work in the medical field. That was my best access to a way to communicate my questions to the doctors during a time when solutions from them were far too few and getting calls directly from the surgical team were a near impossibility (I will describe exceptions to that as well as other solutions we came up with in another post). If you think you are going to ask an inpatient provider a question directly without quite a bit of effort, definitely manage your expectations about that (Tips on this another day).

    Unfortunately we were not assigned that original RN case manager with every readmission to the smaller hospital and the second one we had was more no-nonsense. She was courteous in asking to speak freely and I encouraged her to do so. Her recommendations surrounded accepting the readmits as the new normal and she described ways to learn how to stay home longer until things are extra emergent in hopes of making it to daytime hours and potentially seeking outpatient scans during daylight hours and maybe even a direct admission. She did not return calls very often and did not seem to want to pass on my questions as readily, attempting to talk me out of any suggestions I made about the surgeons being held accountable for finding a solution for my mom or directly referring her out. Also unfortunately during our most recent readmit to the smaller hospital, our original Case Management RN was back on Mom’s team, but she was colder and less involved (it seems there are penalties for readmits and after a while the hospital shows you they want to be rid of you, even if they have not resolved your loved one’s problem).

    Also less than ideal, at the larger hospital I was not given the phone number for the RN whose title I believe was Care Coordinator. The bedside nurse who went over Mom’s discharge instructions said he stands in the back, but rounds with the treatment team. Interestingly enough, it seems he may have been in charge of our botched home health admission most recently and never reached out to our family at all. At the larger hospital there was no EDD until day of and I was asked to come get my mom. The smaller hospital gave much better notice. Wondering how the larger hospital would have handled it if I said to them I could not come that day or that I had one brief conversation with the social worker and none with the RN Care Coordinator and was never given any advanced notice that the discharge was going to be that Monday.

    Just know that these are things that happen and that overall you are your loved one’s advocate. If you are fortunate enough you can receive help from some of the hospital staff, but it seems to be the exception quite often rather than the rule. But if you are seeking a line of communication beyond calling the bedside nurse (who will often help, but who is also often very busy with other patients), try the RN Case Manager with your medical questions as they can both put the questions in the chat to the doctors (so can the bedside nurse), but they can also communicate your questions and concerns at the treatment team meeting they attend. Leaving voicemails for them is one solid way to go as you cannot leave a voicemail for the doctors.

  • May 21, 2025

    Hospital Hint: Who’s the Assigned Case Manager? Find out early.

    So this one is tricky because at a smaller hospital like the one where my Mom has been treated close to our home, a social worker is not assigned every time and they don’t always stay with a patient for long. Some are obviously off on certain days and when your loved one is in the hospital for multiple weeks or month-long stays with revolving door readmits, you tend to meet multiple social workers per stay. I’m told that not every patient needs to be assigned a social worker as some, as in the case of my husband, have smooth procedures and head home the same day or shortly thereafter. Others are not medically complex and brief monitoring followed by recovery at home is an easy choice.

    However, in situations of medical complexity, like Mom’s, we began to catch on to the fact that she was consistently assigned a social worker. “Great!” you might say, “Finally someone to advocate for the patient and family!” It’s a social worker, someone who surely studied for a helping profession and likely had a class or two dealing with Family Systems. Sadly, in our repetitive experience, support for the patient and family is simply not the main job (and I would most definitely question whether it’s any of the job). Giving some the benefit of the doubt, this certainly could be because of the size of their caseload or because of the responsibilities they are assigned by their bosses, or by the rules of managed care. Whatever the case may be, you will be hard-pressed to find warmth or guidance from your hospital case worker/social worker/case manager. The titles can vary widely, even at one facility, as (according to various hospital staff) sometimes it depends on how long one has worked there or on some of their specific responsibilities. In late January around the time of Mom’s 4th or 5th admission (following the initial emergent surgery in mid-October) I spotted her new case manager’s title “Social Services Specialist” in the portal. And due to a number of mind-blowing interactions I had already participated in (particularly while communicating with the surgical team), my newly discovered and well-broken-in sense of paranoia, sent me texting multiple nurse friends who work for this hospital begging them to find out the significance of this title for me. My sleep-deprived, overextended, Sandwiched self immediately wondered if we were now assigned someone specializing in “social services” because of any number of blunders I may have made as a caregiver and advocate. Were we being investigated now?! I was quickly reassured that we were the proud borrowers of yet another run-of-the-mill case manager.

    Tip: Sometimes you can find the name of the assigned social worker with the rest of the treatment team listed in the hospital’s portal in your loved one’s online chart, but in our experience, it’s not always very soon after admission. And if you think there is something or someone who is going to point you in the direction of taking a peek there to find who is assigned to your person’s care, you’re mistaken. And if you dare to imagine there might be a phone number in your loved one’s portal with a direct extension where you might leave a message for that individual, Nope.

    There are cheerful, lovely individuals whose main job is to push a computer on a cart around the ED and gather insurance info, patient info, and to get important documents signed. However, they Do Not provide guidance about much of anything related to what happens when one is admitted and how to find out who the treatment team is and what everyone’s job is (and is not), how to ask relevant questions and who to ask. and who can hear, and save in the system, a brief explanation of who the support system consists of and what the support person might want to share about the patient’s situation (including but not limited to who’s part of the patient’s village or even some relevant preferences or quirks that might impact treatment). No one is asking these questions that we are aware of and there is plenty of resistance to listening when the family member or advocate wants to share something of note….prepare to say it at rapid speed and for most to ignore such details.

    What does the case worker/case manager/social worker/social services specialist do? Well, friends, it seems the hospital has assigned them aftercare planning and essentially aftercare planning only. I learned to dread the call from them because it meant that my Mom’s EDD (Estimated Date of Discharge) was imminent and that if we did not quickly choose from a small, unappealing list of aftercare options (more details to come in one or more future blog posts on Aftercare with Medicare) they would get cranky with us and begin asserting that we must call a third party and appeal to Medicare for additional days (something I will also detail in an upcoming post). I believe they likely do some advocating for the patient by phone and online as they seek a bed at a rehab facility or access to specialized follow-up care. However, the patient and family rarely are privy to much except for one or more no-nonsense chats about when the patient is getting out and where to.

    If you imagined that your loved one’s case worker/social worker/case manager, social services specialist will know your loved one’s chart well, they might, and may use that knowledge to guide and support the patient and family on their journey to next steps, but don’t get your hopes up. I will say that it probably has not helped that I am often advocating for the hospital providers, especially the surgeons, to find solutions for Mom’s ongoing post-surgical complications and that we are often coming from a place of questioning the surgical or medical team’s definition of medical stability.

    I will also add that we had one experience so far with a social worker at a larger hospital, where they may have even more patients on their caseload, who knows? He was polite and spent a few minutes with us after I asked the bedside nurse to call him. I can’t help but wonder if he would have stopped by at all without a specific request. He wrote down the name of the home health team that we had been working with and when I left an important message later in the day he never called me back at all. The bedside nurse told us home health was set up, I didn’t push because I do not want to rock the boat with these new surgeons, and two days into being home I called the home health team because we hadn’t heard from anyone and they informed me that they rejected the referral (a story for another day) and now I am working on connecting with another home health agency on my own. The small hospital’s communication and follow-through regarding aftercare planning has proven to be far better than this experience with the larger hospital’s social worker. In his defense though, it sounds like the equivalent of the RN case manager at the larger hospital (I believe his title was Care Coordinator) may have been in charge of aftercare. This is our first experience going without aftercare as the small hospital always secured it.

    This is unfortunately not where you will find a well-rounded Patient Advocate and in my ongoing quest for someone to partner with me at the hospital to advocate for my mom, I learned that there is someone with clinical training, the Case Management RN. Spoiler alert, our experience with them led to some disappointment as well, but I’ll tell you tomorrow why the Case Management RN got my phone call most mornings as I sought to advocate for my Mom that day.

  • May 20, 2025

    Hospital Hint: Talking with Patient Experience

    Sometimes communication with Patient Experience starts with a hospital survey or a hotline for customer suggestions or complaints, but if you want to provide constructive feedback directly to an individual whose job it is to listen to that feedback, the Patient Experience staff members are hired to do just that. I was told by the head of Patient Experience that the suggestions we make can be sent to those who oversee the relevant department, but whether the suggestions lead to any true, lasting change remains to be seen.

    After a survey I filled out related to an incomplete initial triage exam where the original provider did not even look at my mom’s skin infection which was the presenting condition, followed by a 10 hour wait in the ED waiting room with my mom, followed by being sent home by the ED providers immediately without treatment, I received a phone call essentially explaining why they will not be taking any of my suggestions. I had suggested that the provider who initially examined my mom let her know that it’s unlikely that the doctors will see her wound as something that needs to be treated outside of the outpatient setting and to be given the option of waiting 10 hours in the ED for an attending physician to send you home, or of signing one’s self out (after hearing that you probably will not receive treatment) and stating you are willing to follow up outpatient. It would be great if someone there would even get you scheduled with outpatient on your way out. I truly wonder if it was worth it to fill out the survey and I am disappointed by how much time I spent on the phone calls to then ultimately receive the gently dismissive feedback. If you’re filling out the survey to vent, you might get a call where you feel listened to. If you’re calling to seek change, the survey did not lead to much in our experience. Has a feedback survey led to any changes in your experience?

    From making two lengthy calls to the feedback hotline of our closest hospital I learned that entry-level employees are answering these calls and tend to say things at the end of the call that imply that the reason you called was just to vent. I like to ask my children and my clients, “Are we venting or solving?” when they share a concern with me. From the feedback hotline, I got a very strong “venting but not solving” vibe. Hopefully some of what I said at least leads to some conversations between the powers that be, but it seems that it’s more about herding the venting to one place where it can feel seen and heard and tidily dismissed and forgotten. Have you found this to be the case when you call the feedback hotline? I wonder what it looks like when the feedback data is entered into the computer and is elevated to each department. Does it resemble what the patient or family member said or does it lose meaning steadily as it is whispered down the alley?

    I had the best experience thus far speaking directly with patient experience representatives. They certainly make you feel seen and heard and they tell you where they plan to escalate your feedback to and what they plan to do. Sadly, even two hours meeting in person with the head of Patient Experience, and a number of phone calls, did not seem to lead to any real meaningful results even after 7 months of repeat admissions and a surgeon’s error. However, these individuals do seem to try and occasionally when they seek out information, you get a few, but don’t bother looking for anything clinical from them or any significant direct communication with the medical or surgical team. They can find you some resources and pass along your comments, but as far as any real power to make changes, it does not seem so. I also wonder which one of the many things I said did they choose to pass along? I urge you to ask for clarification on what they are passing on and what they are not.

  • May 19, 2025

    It seems fitting to launch this blog exactly 7 months after my Mom’s initial emergent surgery on October 19, 2024. She was discharged from her second hospital system this evening and we’re home preparing for a new liquid diet and awaiting an elective surgery we hope to schedule in 2-3 months. After almost 7 months of going through what can only be described as “a whole lot,” we were directly transferred to a hospital we hope is better equipped to handle mom’s medically complex case, while remaining truly aware that so many other patients and their families have seen the depths of diagnoses and treatments we hope to never experience.

    This blog is to be a forum for the caregivers, the advocates, the support persons, many of us who find ourselves navigating the sandwich generation. At the moment I find myself just a hop, skip, and a jump ahead of where I was 7 months ago, clueless in terms of how to advocate for my mom in the inpatient hospital system after her first emergent surgery (her only surgery beyond having her wisdom teeth out at age 23 on her first wedding anniversary). As I frantically texted everyone I knew who has ever worked in a hospital, a dear friend’s husband (who was a guiding light more than once when I was at my wit’s end and did not know what move to make next) mentioned to her, “Maybe she doesn’t know how inpatient works,” and my dear friend mentioned that to me.

    It occurred to me that even after I managed to advocate for my dad in a different hospital following quadrupal bypass surgery and through his recovery a few years ago (with reassurance from this same caring couple and hours of support and education by phone from my Amazing cousin who worked for years as an RN with patients recovering from surgery), I still didn’t know how to play the game that is the inpatient hospital system. As a family member and an advocate there was not clear direction in a situation of medical complexity who to go to within the hospital for guidance.

    So in my quest to figure out how inpatient works from one hospital to another and to support each one of you as you seek the best care for your loved ones, I am writing what I know from our experiences thus far and what I hope to find out. It is my wish that you will find helpful information here and that you will share your experiences so that we all learn and grow as advocates for the ones dearest to us. May patient care and outcomes improve as we learn to ask better questions, to seek better answers, and to come alongside those we love to help them to be seen.

    And may we feel seen here.

    Hospital Hint: It seems there’s no such thing as a Patient Advocate in our brief experience with inpatient stays. I look forward to sharing this week what I know so far about those in roles that seem sort of patient-advocate adjacent. They sound like they are in the neighborhood of being supportive of the patient and family, but they have very specific roles with the hospital in mind first and it appears they may be burdened with too many cases to effectively provide desperately needed guidance to patients and their support people.

    These days every staff member from transport to bedside nurse is encouraged to be an advocate, yet, in our experience, no one’s main job was to truly come alongside the patient and family. And those who served in those roles seemed to have very little power, pull, or sway or claimed powerlessness frequently.

    Where my mom was admitted there was plenty of info around on posters about how discharge begins at admission so I asked the bedside nurse on a Sunday evening approximately 24 hours after emergent surgery who the social worker, case worker, discharge planning person was? I didn’t know the term. Her response was that Nothing gets done on the weekends and no one was yet assigned to my mom. I asked if I could have a general phone number where I could leave a message to describe our family’s situation and she wasn’t aware of how I could get that number.

    In this week’s posts I’ll introduce you to our experience with the following positions: Patient Experience, Case Workers, and RN Case Managers