Sandwiched Support

Blog

  • June 3, 2025

    And Sometimes we Crash Out

    Today I got up at 6 AM as usual on the kids’ school day. I got Mom out the door to get bloodwork around 7:30 AM so that I could go do end of school year errands and be back for Mom’s home health physical therapist to arrive and to meet with online clients 1-4 PM. I pulled the car up to the curb at the lab, the one that I basically only drive for Mom because it’s the only one she can get into. I went into get one of the wheelchairs, making sure that it has the footrests that work for Mom, but no calf rests because they hurt her legs as she lives with lymphedema. She and I together got her in the wheelchair and into the lab, only to be told that the larger hospital’s provider wrote the lab orders, but not the diagnosis on the (yep, even in 2025) old fashioned prescription pad slip I had to carry to the lab that is local to us because it is not a part of the same hospital system as the larger hospital who is now overseeing Mom’s care. We got back in the car and I had more calls to make without the correct phone numbers with me to ask the large hospital provider to please communicate the diagnosis to the lab as soon as possible. Like the resourceful advocate that I am, I went back through my phone to find the number I received a call from when the larger hospital system called and changed Mom’s upcoming appointment. One thing after another. But if I don’t do it, it won’t get done. I know many of you feel that.

    Meanwhile I am getting plenty of texts and calls and emails all day about life, including an email from one of my bosses that wasn’t entirely unexpected, but absolutely added to the stress of the day. I started driving around with Mom to my errands to keep her out and about while we awaited an answer about getting the lab work. She made the best of getting to see the “sights” around town and spending the day with me and I remained stressed looking around in 10 different stores for some things I was trying to put together. Mom helped me have a few laughs, but I knew that after work I had more errands, followed by morning clients, followed by the privilege of being able to attend two of my children’s end of year parties as a volunteer, followed by more clients, and an evening of getting ready to head out of town for a funeral on Thursday.

    I put every puzzle piece of the to-do list today together doing so hungry and dehydrated (ate lunch late and caffeinated). The new physical therapist session went smoothly, client sessions done, fed the kids, and as my husband stopped by home for 10 seconds after work to pick up our son for soccer practice he said, “See you at zero dark thirty” which he often says to note that we are ships passing in the night, often heading in different directions to do all the things for our kids, my parents, and our volunteer commitments. I headed out and picked up my youngest children’s printed birthday invitations to hand out to their school friends tomorrow. I dared to look at just one sheet of each set of invites and, finding them acceptable, paid for them and went on my way making two more stops going over all the things in my mind. Things needed for this week, next week, and in the months to come. My mental load today involved talking with 6 medical people related to Mom’s medical care either by phone or in person, going through the mental checklist of everything I need and want for the things coming up that we are doing with and for the kids, with and for our church and groups we are involved with, with and for the school, and for summer in general. I asked myself, what might be sold out if I don’t grab it now and what doesn’t really matter and can wait until later? In and out of the car and out to the other end of town again because I forgot something this morning even though I was just there earlier.

    Sound familiar? If you are the primary parent and default person for everything-except-primary-financial provider, it probably does. Many of you might even be the primary provider PLUS the one keeping Everything running….hats off to you as you choose to make it all work! After arriving home later than I wanted and preparing for a late night getting things ready that are important for me to do, I opened the paper bag holding the printed invitations, noticed that there was only one sheet of my sons’ and the rest were my daughters’ and I lost it. Was it really about the invitations only? Of course not. But a little bit it was. A little bit I was pretty furious that I made two trips to that side of town and only made it back with the invitations once. I was irritated at myself for not checking things beyond the first two pages in the bag. I was feeling the weight of all of the things that I TRULY do want to do this week and the fact that, as is often the case, the things I could cross off the list without major consequences are actually the only things I want to participate in.

    Do I want to arrange all of the appointments? Nope, but no one else really can. Do I want to make meals for my family and know that the piles all over the house (of an infinite number of categories) are almost all my responsibility? I really don’t. Do I want to do never ending laundry? I do not. But these are the things that are really needed for my family members’ well-being. I want to come to the class parties (and I know what a privilege it is that I have the flexibility to do that). I want to host big overblown children’s themed birthday parties that involve everyone we know (when I see a party come together and people enjoying it, it lights up my life). And I want to do the shopping because I am queen of getting fantastic deals and making sure we have that extra quality of life, even if most of it is made possible by clearances, buying in bulk, or discount stores.

    I am thankful to be able to put the puzzle together each day, but sandwiched life really piles on sometimes, and self-care without dropping the balls in the air isn’t always possible. There are many valid things to be said about balance and boundaries and self-care, but sometimes the best laid plans don’t go your way and it’s absolutely a thing that the expectations for the designated family caregiver can be pretty heavy. The family caregiver makes it all work out and some of that is rewarding and meaningful. I have a little sign over my pantry now (in our old house it was right above the sink where I washed the dishes) which reads, “Thank God for dirty dishes; they have a tale to tell. While others may go hungry, we’re eating very well. With home, health, and happiness, I shouldn’t want to fuss; by the stack of evidence, God’s been good to us.” And this is true. I am thankful for what my messy house means, that we have thriving healthy growing kids and a sweet spoiled dog, and there’s a beautiful space where my parents share the home and I can provide help followed by an easy commute by foot right upstairs to my bed. I have a phenomenal amount to be grateful for and I am. I am aware that my problems are absolutely first world problems.

    But also, more than one thing can be true at the same time, and today it is also true that I feel sandwiched from both sides. It’s not that I want the true alternatives to this, but I wish I truly could pause life like I pause my kids’ shows, to build in more margin. And if you are feeling big, real feelings about being the one who does SO much to keep everyone in your corner’s world going, I want you to know that you are absolutely Not alone. And if you say things you shouldn’t say in front of the kids sometimes when the last straw hits the fan (or if you retreat and hide away while they wait outside the door), I see you. I wanted to be seen by my family tonight, but none of them get it because they don’t live it and they were, understandably disturbed by my meltdown over a printing mishap. My husband solved the problem with an almost-as -good printing effort at home which saved the day and kept me from another trip across town, but not before he told my dad I was overreacting over nothing and dismissed the point of everything I try to do by telling me if I can’t handle it I should just stop doing so much. Not helpful in general and I know many of you have been in similar situations and know how that feels.

    I don’t ever want you to think our crew is executing every task with perfection because our humanity is definitely showing. We are taking it day by day with all of you. But can we all agree that with AI booming in 2025 that we have got to be able to find the technology so that I don’t have to carry a prescription slip to the lab- LOL.

  • June 2, 2025

    Bread on the Bottom

    As we head into June, school comes to a close for the school year, and I begin week 3 of the blog, I am reminded of the bottom bread in my sandwiched life, our Amazing kids. This week I plan to put out there some of our hopefully relatable experiences as we navigate life with live-in aging parents and our children all under one roof.

    There is some cautious optimism about the summer in terms of the kids having more free time due to public school being closed for the summer. I will spend more time with them during the summer months and this year we need that more than ever before after nearly a full school year with my Mom’s ongoing hospitalizations and their mom off advocating. Shifting into the new summer schedule and balancing life’s duties with more hours with the kids at home can be challenging to say the least. But Mom is stable right now on her ongoing liquid diet and I am finding a little margin here and there to dig myself out of some of all of the crisis time backlog.

    My hair stylist has a little sign in her salon that says “Hairapist” and it’s perfect for her because not only is she skilled at making so many look their best, she also is a great listener and conversationalist. On Friday I spent hours there having the best morning (a little bit of occasional self-care that is important for us all, especially those advocating and caring for others) and bent her ear about the following interaction with my husband that led to quite the disagreement between us on Wednesday night. As a fellow primary parent she immediately understood my point of view and actually finished my sentence.

    Another beautiful friend (also a primary parent of several kiddos) recently mentioned to me that she and her husband at the time weren’t “on the same page” and that is now my favorite way to share with others that my husband and I are in conflict at the moment. On Wednesday night we certainly were.

    As the primary parent at home, only adult child of two live-in aging parents with various health concerns, and a golden doodle in a busy household, my chores are simply never ever ever close to being done. I choose to participate in part time work for multiple employers to retain some semblance of my career and to contribute financially to all we are keeping afloat. We volunteer our time in our neighborhood and within the community and are uber drivers for our kids’ activities constantly. My piles have piles and my to-do lists and notes litter the dining room table while my home office has quite a few tasks awaiting my divided attention as well.

    The scariest pile is an area in my garage piled up with everything from the kids’ upcoming summer birthday parties to Christmas decorations (from our celebration in March this year when Mom was out of the hospital briefly) and Easter items that never made it back to the attic…. Yet is one of my favorite words to instill hope in my clients, but my husband is understandably quite fed up that that huge pile hasn’t received my attention…yet.

    So we didn’t have any kids’ activities this past Wednesday evening and no plans so I shared with my husband (days in advance) my plan to spend a couple of hours making a significant dent in that pile by taking trips through the dining room and up two staircases to the attic storage area. I made an announcement to the kids at dinner sharing with them that there are some birthday surprises hidden in that area that I need to clean up and so they were to be in the basement, outside, or upstairs in their rooms, but not on the main floor while I was walking through with the items. I also reminded my husband how much he wants that area cleaned up and asked him to be the primary parent for 2 hours (which at our kids’ age involves being a bouncer in voice only- reminding them to stay out of temporarily “restricted” areas and breaking up battles between them). I sought personal space and uninterrupted focus and no one was more full of false hope that evening.

    No sooner had a walked in the house with the first load but I found my youngest on her wobble board living her best life in the dining room while my husband clearly had no idea where she was and admitted such when I questioned him in irritation. I am the one who tends to be the most emotionally expressive and he tends to disengage, shut down, and retreat in the face of conflict. Later we used the tools that we know and have applied sometimes inconsistently during our 20 years of marriage and I shared how frustrated I felt when he chose to prioritize cleaning up unnecessary parts of the dinner mess in the kitchen (gotta put the food away because of the dog) that could have received attention later, over corralling the kids as I requested ahead of time.

    He responded by letting me know that it is an unreasonable request for one parent to be expected to know where the children are while also cleaning up from supper. And my hair stylist chimed in right on cue that mothers everywhere are doing that every day. Nailed it.

    If you have children or grandchildren, please do something special and encouraging for their primary parent and get to know more about the weight of the world on these individuals so often. And start ongoing conversations in your home about not only what your priorities are, but also how you’re going to attempt to handle everything when things that cannot be controlled (such as health issues of an aging parent or a challenging season in a child’s behavior) come up for you. Some have a partner or other support person to help share that primary load, others are running a one-person show whether they truly chose that or not.

    My hair stylist’s understanding of my POV definitely made me smile and I may have laughed out loud a bit because I may have responded to my husband’s statement by saying that I could line up 20 mothers who would tell him that doing that very thing is a huge part of their day to day. What’s reasonable though does of course vary based on the individual, the situation, and the circumstances. While that may have been a bit of a cop-out on my husband’s part, which we have since chosen to put behind us, there are hundreds, maybe thousands of examples of responsibilities in life’s mental load and task load that are very real for the juggling in the sandwich generation.

    How can we find better ways of sharing them I wonder?

  • 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.

  • March 28, 2025

    Patient Refused

    I need to do a deep dive back through Mom’s hospital notes (In my spare time) to see how her patient refusals that I’ve heard so much about are documented. From the few I’ve taken a peek at, I am disappointed by how little detail is recorded about Mom’s stated reason for her refusal in many cases.

    One stand out area of “self-limiting behavior,” as one Physical Therapist coined it at an intensive rehab Mom went to for therapy during our current 7 month journey, was declining PT during periods of abdominal discomfort or episodes of more intense abdominal pain. Mom also has terrible arthritis and now has bone on bone knees so walking around for her is excruciatingly painful. Medical professionals often agree that she is physically able to take more steps than she typically does, but as it is difficult to experience someone else’s pain directly, it’s just an area of significant difficulty that impacts her treatment. She is being treated for ongoing Adhesive Disease following a hernia repair and bowel blockage surgery. Along the way she has had a significant post-surgical infection during which she experienced so much pain that she could not tolerate food or liquids and they ended up putting her on TPN (total IV nutrition). We learned later that there was so much junk in the TPN that it caused her to gain weight at a time when her extra weight was a limiting factor as well.

    Hospital Tip: No matter how uncomfortable your loved one feels, if they need PT and OT while inpatient I strongly advise them to participate when the PT and/or OT is in their room. Now PT and OT will not allow the patient to continue beyond what they truly can handle (for example if they become dizzy, they will have the patient sit down or if the patient’s BP is too high or too low for activity they are not going to push those limits). But you should know that not only are there far too few PTs and OTs (and I’m quite sure this is true for Speech Therapists and other specialties as well, but we do not yet have experience with a need for Speech support) working in regular inpatient hospitals to meet the need, but Also your loved one’s “refusals” are being counted and held against them.

    What do I mean by that? Anytime your loved one is in need of some kind of aftercare for which the patient and family are not paying out of pocket (and probably even in cases of private pay the notes are being examined to determine appropriate level of care) the admissions staff at the skilled nursing centers, intensive rehabs, or home health agencies are thoroughly reading through your loved one’s chart. They are not just looking for diagnoses and needs that they may or may not be able to meet, but they are also noting what kind of patient your loved one has been. If they are repeatedly asking PT and OT to come back later when they feel better (pro tip: they don’t have time to come back as there is already not enough of them to go around so if they ever do do that for you, Wow, they are trying to go above and beyond for you with limited resources) they are not considered the ideal patient and are unlikely to be accepted at an intensive rehab (more on the differences between aftercare facilities in a future post). They are also reading all about how the patient cooperates or does not cooperate with taking medications and with complying with nurse recommendations and provider orders. Your loved one’s moods and rough days while going through health issues that have them in the hospital are part of the clinical picture of them that may or may not set them up for success when you are hoping to get them a bed at the nicer facilities with better care.

    Early on when I was first learning about aftercare and how the facilities get a 1-5 star rating in PA from Medicare (It’s still not clear to me what all factors into that, but I think I just need more time for research), I called the only 5 star skilled nursing facility close enough to home that we hoped to have Mom go there for rehab. She had been rejected from this facility and at the time I did not know (and I think I really didn’t want to know) if that was because of her physical condition at the time or because Mom’s notes may reflect that she hadn’t been too keen on doing PT with abdominal pain (typically from ongoing partial bowel blockages) and her bone on bone knees. The facility had communicated back and forth with our hospital social worker and the social worker made me aware of the rejection. However, I thought that if this facility knew how dedicated we are as a family to bringing Mom home just as soon as she was just a little stronger and could get to know me by phone and see what a support system she has in her family and hear about all of the accommodations we have for her at home, they would surely reconsider admitting her. I was very wrong. Before I got much of a word in edgewise the admissions director snapped at me that Mom was reviewed by their whole team and she is rejected because she is at risk for readmission. No chance to explain who we are and what she has to come home to after a little support. I wonder if the hospital staff is considerate in the word picture they paint of the patient.

    You may find your loved one rejected from multiple facilities and if other desirable ones who would normally accept your loved one do not have a bed or cannot accommodate something (such as a wound vac) that your loved one is currently managing with temporarily, you may find yourself choosing between home before your loved one is ready and a couple of 1 or 2 star facilities while the hospital is announcing that your loved one is medically stable for discharge and you’d better make that impossible decision right away. And if you don’t, your option is to appeal to Medicare or start paying the full hospital bills after noon the next day.

    Key Takeaway for you: Talk about this with those you love. Demonstrating treatment compliance and noted refusals has proven very significant in opening and closing doors for Mom along the way. Think about how you will handle similar situations if you and your loved ones are faced with them.

  • 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.

  • Friday Refresh

    May 23, 2025

    Thanks for checking out our first week on the Blog! This week the blog sought to start a conversation about searching, sometimes fruitlessly, for the Patient Advocates.

    Here’s a refresh on the topic and some relevant questions: Whose job is it to get to know the patient and the patient’s people who will support their care through hospitalization, rehabilitation, and beyond? Can we potentially create more efficiency and better outcomes by having admissions admins point patients and families interested in support and guidance to online tools that can record data? Can the admissions people offer to help them fill out a brief survey about their circumstances and needs (if they want one)? Can trained compassionate individuals working from home review that data quickly and send a Patient Advocate to those who need them the most? Can there be a voicemail or live chat monitored by WFH employees who can put family and patient questions in chats to providers who can follow up? Can we find a way to bring support and compassion in the form of answers and guidance either in-person to the hospital bedside, virtually by video chat or by phone or live chat? Can we better involve the patient’s chosen support person?

    How can this work? How is the system standing (or maybe sitting down) in its own way? What are the relevant roadblocks? I’ve been hearing many whispers about how surgeons, hospitals, providers and their offices, rehabs, skilled nursing facilities, and even home health teams get “dings” on their records with readmits, with errors, etc. From online searches it appears that Medicare penalizes the hospital by paying them less when they have “excess readmissions.” I wonder if an advocate could have explained to our family what was going on with the surgical team as they interacted with us and the challenges they were facing so that we could understand one another’s concerns better and come up with a reasonable plan that takes into consideration all factors. There certainly appear to be Managed Care related distractions going on.

    Fun Facts about the Founder and Family:

    Sandwiched Support was born from an only child’s challenging journey to advocate for both parents as they receive treatment in the post pandemic American Healthcare System, with some encounters more challenging than others, while frequently attempting to find the best way forward. Sometimes blindly she has sought and continues to seek the answers that will lead to compassionate healing (or at least symptom improvement) and higher standards of care for those she cares about and for All. She is in the thick of working motherhood and more (iykyk) and really has no one to truly tag out with when it comes to coming alongside Mom and Dad who graciously accepted the invitation to move into one home together as they face health concerns in their 70s while she continues to raise her children. Her resilient and reliable husband partners with her to, in part, lend a hand and lighten the load and she has what can only be referred to as an amazing network of caring encouragers as she has had the distinct privilege of casting a wide net in seeking support within and outside of her communities over time. In recent months she has been hanging her purse in Mom’s ED room more often than she would like.

    Here, it is her greatest goal to help Make it All Make Sense for all of us.

    Key Forever Takeaway: There is an amazing retired physician who is my mom’s age and took the time to talk with me on the phone for hours the other day. Among other things she was telling me about Palliative Care (a topic for a future post) and emphatically stated, “If you hear nothing else I say during this conversation, please remember that Palliative Care is not Hospice.” I learned a tremendous amount from sharing a little and listening A Lot during that phone call. If you will allow me now to say to all of you, if you get nothing else out of reading these blog posts, Please remember to Communicate with your loved ones about it all. Start and continue the conversation.

  • 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.