Sandwiched Support

Tag: hospital

  • 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?

  • It’s fine, I’m fine, Everything is fine

    Sandwich Generation life took over over the holidays between all 8 of us getting the flu over our Christmas break and New Year’s, one after another after another. Thankfully we had our vaccinations but it was still yucky and ugly. I told myself I was going to be able to do this blog daily. Then I told myself I was going to be able to catch up all of the daily posts I missed starting in October and add photos and then starting with making the Trick or Treat magic for the neighborhood with an amazing fellow neighborhood mom and then getting everything ready for the holiday season this fell off the list. But isn’t that just the epitome of Sandwich Generation life. I am hoping to shift to once weekly consistently now in 2026 starting with today.

    Thrilled that Mom’s first knee replacement surgery is February 2nd but we still had to not only go to a surgery scheduling appointment with the surgeon’s PA to choose which knee to start with and discuss the surgery, but also had to have a Clear for Surgery appointment with the PCP, and another one with the Cardiologist. And as if that weren’t enough an NP at the surgeon’s office had to see Mom a month prior to surgery to clear her when we were just at the PCP three days before that and at the cardiologist 3 days before the PCP. Simply cannot help but think that there are too many cooks in the clearance kitchen and everyone wants a piece of the billing pie. She’s high risk in certain ways, but that last checkup with the NP when she had just seen her PCP took the overkill cake for me. I am the Sandwiched accompanying uber driver and appointment advocate and when I can’t schedule my own clients I don’t get paid. But yeah, let’s have an NP take up our time checking on Mom when a physician plus a specialist’s office just checked her within the past week.

    One of my awesome bosses gifted me some dumpster fire socks and I am still looking forward to finding a time to put my feet up so the sock bottoms can be read by others “It’s Fine, I’m Fine, Everything is Fine.”

  • September 30, 2025

    Going Through the Process

    Couldn’t tell you exactly what the rules are for managed care payments and I’m sure there are good reasons for providers to take things slow but after feeling some symptoms that I haven’t felt before that I now think might be related to Lyme’s (my husband is going through similar symptoms and trying to get a diagnosis as well right now) for about a week and a half and trying to fend them off with ibuprofen. I went to my regular urgent care asking for diagnostic measures.

    The provider told me it sounded like just an issue with my back. She stopped short of saying the word “injury,” and as I told her I haven’t injured myself, but she told me flat out I don’t have enough symptoms for her to order bloodwork and that I will have to go to my PCP. She also said that they are urgent care don’t order bloodwork because they aren’t going to be following up with the patient.

    Can we truly not assign a trained medical assistant plus the urgent care’s online portal to alert the patient of the bloodwork results and then connect the patient with the right specialist or the primary care provider from there depending on the results?

    So in my limited experience around here, I spent time waiting for an urgent care’s provider to examine me (she barely touched me) and was sent on my way with a 5-day steroid pack after a shot of Toridol (a non-narcotic anti-inflammatory).

    It was not a bad start for a sensation of pressure and numbness in my back and pain in my side. But she would not order any tests. Not a urine, not a basic panel of infection and inflammatory markers. No blood work and no scans of any kind including an xray.

    The pain was in no way unmanageable and I told her right away I was not seeking pain medication, but rather a diagnosis to seek relief from the pressure and numbness I was experiencing.

    More tomorrow about how my symptoms continued and the next step I took.

  • September 28, 2025

    Looking at the Week Ahead

    It’s a season where I am already overwhelmed on a Sunday night just looking at my week ahead with some manner of dread. A lot of weeks are like this but not all. Last week I was able to get coffee with two dear friends and we are aiming for once monthly and are so far two for two.

    But tomorrow I work and then I get Mom on an online appointment and then I head to two back to back appointment that I am fitting in to attend them in person for me. Then two additional online clients and then running kiddos to their evening activities. 2 kiddos out of 4 have something tomorrow evening so it’s not a super heavy load where we need to ask my Mom-in-law to be the third driver. Phew! She’s out of state visiting my sister-in-law and her family.

    Then it’s work outside the home the next two days with quick dinners and the evening rush and then Thursday I have client from home and doctors’ appointments for Dad and Mom to and Friday has more appointments for Mom.

    I am planning to watch a show online and spend a little time on social media and also try to get a decent night’s sleep while I’m not feeling my best.

    It’s A LOT right now while sandwiched. A whole lot.

  • September 23, 2025

    Outside Texting In

    You would think I would simply be grateful and I am grateful, but it’s complicated! Mom is home doing well on small amounts of soft foods right now and so far it’s been a good day with me wrapping up at work outside of the home today and Dad holding down the fort at home. He grocery shopped and has helped Mom care for our family dog who hasn’t been feeling the greatest lately (she does show improvements though).

    But late morning today at work I missed a call from our church prayer chain where a recorded message is sent out on a call line and plays repeatedly until you hang up so that you can get all of the information. It’s a great resource so that those who want to pray know how they can do that for someone who is in need (frequent prayer requests are for medical needs and concerns and losses of loved ones and anyone at church can ask for prayer for anyone in the community, sometimes using last names, sometimes not). Very soon after I saw that I had missed the prayer chain call and didn’t get to the voicemail before my mom-in-law texted me that a close extended family member on my husband’s side of the family had a major medical event happen to him earlier today.

    Certainly others have had things happen medically other than Mom recently, but not a lot of family has had something this major that needed immediate surgery at least not that my worried brain is remembering at the moment, since Mom’s initial emergent surgery about a year ago. We do know of medical conditions and treatments that are ongoing for several family members, many of them due to serious medical conditions, but to my knowledge all of those individuals are currently stable at home.

    So lately I have been the medical advocate, the closest family member of the patient, the one hurrying into the hospital on repeat and texting everyone else urgent questions and regular updates. Today I am the friend who also happens to be a relative as two of this man’s daughter-in-laws are my very close friends who I have done a lot of life with. They have been neighbors at one time, part of the church we regularly attend, part of moms’ groups I was part of when my kids were little, part of my baby showers (one was at my wedding shower and played violin at our wedding). We have been friends for decades. One of them was at college with my husband and I, another had me in her wedding. And I am texting them today trying not to intrude, but communicating love, support, and encouragement fully from a small distance.

    I’ve assured them as they assured me when I was going through something similar (but not exactly because I cannot know what this specific situation is like for them) that I will come pick up their kids when they need me, that I have no specific expectations of when they will contact me back if at all, and that I am praying for their family member and am here for them.

    This extended family member is wonderful and truly loved as is his caring and compassionate wife. They lost their youngest son in a terrible accident years ago when we were in college and have been through so very much already and never lost their beautiful faith. They are a true example of loving parents and grandparents and loving people who serve those they care about and the community so selflessly.

    Lately I have been the one sitting by the patient’s bedside texting away to receive support and answers from knowledgeable others. The daughter-in-laws are both nurses and have often been two of my go-to medical people I know who I can go to with questions about Mom.

    Now I sit at my desk in my office with everything caught up waiting to see if I’ll have a walk-in appointment pop up before I leave for the day. And really all I can think about is that the man who married us 20 years ago, the man who we asked to provide baptism for all four of our children, and the man who has a very distinct voice and personality and who can talk to everyone with a focus and a sense of encouragement showing that that person really matters to him is having major surgery and I am waiting away from the hospital. I am not in this waiting room this time.

    I am on the outside of this one, texting in. And I can barely contain my prayers and my questions. And I can hardly remain in my seat. And I know that no matter what happens that it has been and continues to be nothing but the utmost blessing and privilege to know this family member and both the family he comes from and the family he and his wife have built together.

  • September 22, 2025

    I brought Mom home from the big hospital’s rehab today. It was a quick run up and back with a full afternoon of online clients and evening activities for the kids ahead. We did not have a big reunion as she was ready to head through the door into the suite she and Dad share. Each kiddo did go in and greet and spend time with her, but the mamarazzi wasn’t there this time. At this point we are deeply grateful while also on the edge of our seats praying that as far as this medical journey goes (this one that started last October 19th) maybe we will wrap it up before a year. She was rehospitalized again last week Monday-Wednesday and was able to return to the rehab at that time with planned discharge home today with home health nursing, PT, and OT starting Wednesday of this week.

    It feels a little like Groundhog Day kind of in the worst way while also allowing for very cautious optimism because there has not been a post-surgery blockage.

    We’ll take it, but it’s also true that We’ll take it from here. Some progress takes place more smoothly at home and we are hopeful that that will be true for Mom.

    Practicing acceptance that recovery and healing is rarely linear.

  • September 16, 2025

    This is not a cutting matter.

    If a surgeon is being asked to do anything beyond determining if surgery is needed, if post-surgical healing looks to be on track, or of course surgery itself they seem to unequivocally prefer not to.

    I get it, they are the highly trained specialists and the only ones who can perform the surgeries (along with other types of providers and specialists on their team and similar teams). So they seem to want the hospital to pass the patient, with post-surgical complications, onto another department of providers (in Mom’s case it’s been internal medicine or GI) to monitor and treat them if there is nothing that warrants emergent or scheduled upcoming surgery.

    But yet the hospital wants them to show up each time to follow through with making sure the patients they operated on are taken care of. Seems reasonable and understandable until you factor in how busy they are and how few of them there are and you start to notice them getting short with abs frustrated with the patients who return with pain, with “inflammation,” with complications.

    From being unsettled and taking a longer time to heal and recovery than the average patient of the same age and condition (this seems to be Mom’s situation right now) up to the need for emergent follow-up surgery and everything in between I’m sure they see so many patients that it may be difficult to keep up with it all.

    So what are the hospital systems doing about this? Can there be more PA’s and NP’s who are trained by the surgical team and work for them and with them to provide excellent follow-up care not just in the office post-op, but also with the more complicated situations where patients are readmitted post-surgery with a variety of problems? Certainly the surgeon who operated on the patient and the team should be closely involved at looking at all scans, ordering tests, and weighing in on the treatment plan after considering all relevant information, but surely other educated medical providers who are not operating can provide supportive care as the patient is under observation.

    Can we come up with a better system where someone who has time truly listens to the patient and the patient’s family/advocates/support people to get the full picture while tests are being run? Can those individuals be trained to diagnose and treat post-surgical complications that do not appear to involve the need for further surgery to free-up the surgeons without leaving the patient and patient’s family feeling dismissed?

    How can the hospital teams communicate and work better together?

    And who can we assign to communicate with the family and other members of the support system on a regular basis to receive and answer their questions with empathy and compassion and to provide reasonable medical updates?

  • September 15, 2025

    Admit for Observation

    Mom has ongoing abdominal pain and is in the ED of the big hospital and they are going to admit her for observation for 1-3 days. Surgeon said earlier that the inflammation in the CT scan looked mild and Mom could go back to the rehab. Plain is not ongoing and they say admit 1-3 days. I wonder how we can know how long it will take, how long she will need.

    It’s tough to plan the week and when she might be discharged. It’s hard to know what to expect and to imagine next steps. There are worries that this could be last Fall all over again and everything that came with it. Dad says not to worry ahead of knowing what will happen and as a mental health professional I too know better, but in the sandwiches season it is a challenge not to fear the unknown.

  • September 11, 2025

    3 Day Rule

    I saw an article by CBS News on my phone today talking about how a patient on Medicare has to have been in the hospital (not counting the ED) for 3 days which is 3 midnights in order for the patient to be eligible to enter rehab following the hospital stay. Something new to me again. Mom always has been hospitalized for more than 3 days when we have sought out rehab for her so I did not give thought to how long she had to be hospitalized qualify to go. I just thought it was based on medical need to be in rehab for PR and OT.

    Always something more. I wonder if I will ever find the time to read through every document full of fine print.

  • September 10, 2025

    Always Something More to Explore

    Today I found the time between clients to answer the call from Mom’s caseworker at the rehab without having to return the call. She shared Mom’s EDD and stated that Mom has a certain number of authorized days in their facility this time around. It seemed like she might be new because when I questioned her about this, stating that Mom has been in the Acute Rehab Level of Care multiple times in two different facilities and no one ever talked about a time limit that Medicare had authorized. Thankfully this time it seems, in the improved condition she appears to be in, that it will be enough time for her to be ready to come home.

    But I asked to speak with someone who could explain the authorization and billing information a bit better and the caseworker said she would have to find someone to ask to call me. She also did not know how to transfer me to the nurse’s station and I waited while she asked someone. Totally understandable if she is new, but she did not explain to me that she is new and I truly would prefer to know what she does not yet know so that I can seek out someone there who does know the information I am looking for.

    And once transferred to the nurse’s station I asked about the xray that Mom had today and Mom had already texted me that they had just completed the xray. The nurse told me the xray technicians were still on the floor so it might be later this evening until I receive a call back with the results. I was as kind as possible, made sure she had my number and clearly requested a call back. It’s a good thing that as I drove home at 4:30 PM I called Mom on her cell phone and she was able to tell me what they found on the xray (which this time thankfully sounded like it was nothing of significance), but what if my loved one couldn’t keep me updated by cell phone.

    The nurses never called me back. Nor did anyone from the medical team. And no one was going to tell me about the xray she had just had because I brought it up to the caseworker and she admitted that she knew about it. When was anyone going to calk and tell me?

    The grass is not necessarily greener at the big hospital’s rehab and this new insurance benefits info regarding a limited authorization is definitely something new for this sandwiched advocate to find out more about. Always best to know more before, heaven forbid, next time.