Sandwiched Support

Tag: nursing

  • March 24, 2026

    Downtime

    Sometimes I hate to call her on it because I cannot imagine the pain of having bone on bone knees, but Mom tends to thoroughly complete the PT exercises that involve her moving her arms and legs in various ways while sitting or lying down, but struggles to motivate herself to choose weight bearing exercise for her knees. So far she has gotten one knee replaced about a month and a half ago now and her recovery was slow but steady at first as she transitioned from the smallest local inpatient hospital where the procedure took place to our favorite local rehab facility for intensive PT and OT. She was certainly making progress with daily therapy.

    Then she qualified for home health which we greatly appreciated because I am her primary driver, advocate, and support person and I work two part-time jobs (one from home where I primarily set my own hours and one in an office two days per week) and I have 4 children of varying ages and a husband and we all have a home to care for. It’s a lot and reducing the number of appointments we have to take Mom out to is very helpful because she does not drive due to her bad knees , not always being able to get in and out of vehicles and buildings without help, and many years of no longer driving. I also accompany Dad to many of his appointments so that I can be an advocate and a second set of ears. My dad is a back up driver for her but they do tend to stress one another out and he is a cardiac patient with a quadruple bypass surgery in his medical history so having him take Mom to appointments can be exhausting and some of the physical help she needs at times involves him exerting himself in ways that are questionable. But the options are limited when we have to get out to appointments for Mom. So we like it when the providers are able to come to the home.

    But as the weeks go by she no longer meets criteria for them to stay and they discharge her one by one. The nurse goes and will come back if signs of infection or another issue start, and really it’s a good thing to see Mom improve of course and we don’t want her to need providers, but sometimes it’s more that she does still need providers but not badly enough that they will drive to us. Next OT usually discharges Mom as she is very resourceful with her ADLs even when she has to make a lot of her own accommodations. She is brilliant that way and teaches the therapists tips and tricks that they have not thought of at times.

    The one who stays the longest given Mom’s condition is the Physical Therapist, but even when the Home Health PT first starts seeing Mom the most she ever has gotten approved for is 3 days a week with sometimes having a 4th or 5th day with another provider having eyes on her or working with her (nurse or OT) and I get it, staff is limited and funds for this kind of service paid for by insurance are limited as well. But coming from an inpatient rehab where Mom was doing exercises with a therapist typically 6 days a week or at least 5 to cutting that on half right away is a bit of a bummer of a drop off. She is supposed to do the exercises herself on the off days and she will tell you she does, but she is not doing any extra walking without a therapist standing right there pushing her because it hurts.

    And the biggest bummer, which quite frankly feels like a gap in the care plan and does not make sense, is when they say she can still qualify for home health PT but PT will only come to the home once weekly because that is all they will approve and she cannot (as far as I know- I have not yet asked a physician to order outpatient PT while Mom is still having home health PT but I doubt it is permitted) have two levels of care at one time in the same speciality.

    So then the therapist asks us to decide do I want her to discharge Mom and just go ahead and start her on outpatient PT (which she actually has never actually started before- she completed an intake before but then something happened such as a worsening condition or a hospitalization and she never started the outpatient PT). Well this home health PT has specialized training in lymphodema, which is another one of Mom’s complicating conditions, and does such a great job and we don’t want to lose her and I don’t want us to have to drive mom to and from PT 3 days a week selfishly as that adds to the schedule so we say “sure stay on for 4 more weeks.” But she’s only coming once weekly and she was just off for a week and they will usually send a fill-in therapist but it sounds like she got Mom to say it was fine to skip a week and Mom does not choose to do the weight bearing exercises when the therapist is not there. So Mom is only getting the full benefit of the PT one day per week because there are so many family-related factors that keep us dragging our feet when it comes to setting up outpatient PT and Mom certainly isn’t begging to go.

    Wondering if insurance companies and treatment teams have considered that if they just pay for a few times a week of home health PT for a patient who is not fully exercise-compliant on the off days the patient might have better outcomes and then discharging a patient like that (who is not going to do the hardest exercises on her own on off days- especially when the hardest ones are the ones she needs the most) directly to outpatient PT so that she is going from at least 3-4 days of working out with a PT coming to the home and motivating and guiding her though fears and roadblocks to 3-4 days a week of working out at outpatient PT so the number of days participating remains consistent in the transition to a lower level of care.

    And I realize that different patients have different needs and (seemingly even more importantly unfortunately) different funding sources approve different numbers of days and types of care, but patient outcomes are important too. And speaking about a patient like my mom who has had so many readmits and is not fully compliant with the hardest exercises that are the ones that will really build back her strength and have the potential to improve the outcome of the next knee surgery and recovery, wouldn’t it make sense to keep that at home PT coming four days a week for maybe a couple fewer overall weeks and then transition to 3 or 4 days of outpatient PT a week so someone is getting her to do the exercises instead of so much sedentary time?

  • 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 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 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