Sandwiched Support

Tag: health

  • August 12, 2025

    So How’s Your Mom?

    These days as a sandwiched individual who has been advocating for my parents for years now, with quite a bit of advocacy for Mom for almost a year now under the ongoing circumstances, people who haven’t seen me for a while say hello and tend to ask about Mom right away. It’s kind and considerate and I tell them that she’s uncomfortable on her ongoing liquid diet, but stable as she awaits surgery.

    What is the actual diagnosis? What kind of surgery is she to have? Who’s the surgeon? What is the recovery supposed to be like?

    I get it. I am someone who asks a lot of questions so that I can learn more about things and to demonstrate support for others when the questions do not seem too intrusive. And these questions are not intrusive. I have been very open, with Mom’s permission, about the whole journey so that others may learn from our experiences and be better able to advocate for their loved ones and themselves. And these caring people’s prayers and kind words and support are everything when walking through all that comes along with having medical needs or being there for someone who does.

    But it does feel strange to be here. To be of the generation who is asked these questions quickly after a greeting, almost in the same breath. And those who ask are quite often my age or older and/or are individuals who work in the medical field or who have been sandwiched themselves.

    It’s a relatable place to be. I am not alone, but there is a loneliness to knowing I am the one who will be responsible for every pre-op form, every post-op update, every aftercare instruction.

    And though I have experienced much thus far in this medical realm, advocating as the daughter, this does not mean I am prepared for what is next. I am not prepared, but I will go and do my best again while leaning on my village to seek information, guidance, and support.

  • July 29, 2025

    If I’m Not Right There

    I know many of you understand this with regard to your children. If you’re not right there, they don’t follow through with the chore. If you’re not right there they are on their screens instead of focusing on homework. If you’re not right there, they’re often fighting with one another and then blaming everyone else in the room when someone gets hurt.

    But I didn’t consider how, when sandwiched, this would work with my aging parents. I did what I thought was “it all” before leaving for a two week summer trip with my husband and four children and not only had I forgotten to reschedule one appointment I had scheduled for Mom (while also forgetting to return the library books on time), I managed to let something else slip through the cracks. I assumed Mom would handle logging onto a telehealth appointment with a GI provider (specially trained with nutritional expertise) on her own. She has logged in on her own before, but only with the small hospital system’s portal. This would be her first time with the larger hospital system’s online appointment log in.

    Somehow she never got the email with the link the first time. Of course the call to schedule the appointment came while I was driving my car and already feeling sick and having fled the pharmacy where I had just scooted out of line the other day because I spotted someone I wasn’t expecting to be there I was not in a place to make small talk with that person at that time. But that’s another story. Anyway, all of that had happened and I was driving my son to the library and got the call to set up this appointment. I explained that Mom is aging and she prefers that I schedule her appointment so the number they have on file is mine. I then explained that I would be traveling in a different time zone during the appointment and that they needed to send the link to the appointment to Mom’s email address, which I gave them.

    The Thursday appointment while I was traveling came and went and Mom says she never saw the link in her email. I called to reschedule and apparently they had already spoken to her and rescheduled for the following Thursday right around the same time. I acknowledged the scheduled appointment and again stated that at that time I would still be traveling in another time zone and they said that this time they were going to text her the link because when they email it it sometimes goes into people’s SPAM folders. Ok, so why didn’t you offer us the text option to begin with? I did not ask this aloud.

    So I was assured that all was well, that they had prepared Mom to log in on her phone when they texted her the link, and I reminded her myself. But guess what we received in the mail today? A letter stating that she now missed two appointments and if she misses a third she will be dismissed as a patient. Great. I should have wondered when I asked the woman I spoke to if there was going to be another phone call reminding us of the appointment and she said, no, that she was going to put the information in the system, and then I got a call from them a couple of days later asking for Mom and stating they were confirming the telehealth appointment. I responded that the appointment was confirmed and that she would log on if they text the link to her. I confirmed her number.

    If I’m not right there this is what happens. It just doesn’t get done. And now I have another appointment to call about to reschedule. Add it to the list.

  • July 28, 2025

    Enough

    I took my dad to a 6:30 am EKG this morning after getting home last evening from our two week trip with the kids. Did one load of laundry and spent my breakfast being the listening ear my dad needed. Called the pedi office to see if I can bring my daughter, who has been sick on and off with cold symptoms for a few weeks and now has quite a cough, to see if I can bring her along to be seen there while I brought my teen son for his wellness check up or before or after. My son’s appointment was at 9:40 AM, not one of the popular timeslots before or after parents’ work days. But they could not get her in.

    Thankfully both early morning appointments went well and brought helpful results. But then I had to head back out with my daughter to urgent care for a sick visit. They were helpful but it took me right up to zipping home to get there in the nick of time for my first client and the other three today

    My fifteen year old got everyone lunch while I worked, but by the time I was done it was time to pop dozen pizzas in the oven and open fruit and veggie trays and call it dinner as my husband made his way home.

    As I skipped preheating and hoped for the best as usual, I called my husband and vented about how I felt I got nothing done today because I didn’t unpack, I barely did laundry, and picking up around here escaped me as it often does. My husband was on point today and reminded me that I took loved ones to 3 doctors and saw 4 clients and that that’s a 7 hour day alone right there not to mention the drives, chores, and being there for all 4 of my children and both of my parents in different ways.

    It’s enough, but there’s not enough of me to go around. And I’m sandwiched and each day brings many challenges with opportunities right now.

  • July 25, 2025

    Fun Fact about the Founder and Family

    I know I am not the first to mention this issue, but I have sadly reached the age where I sleep with a certain arrangement of pillows because without them I frequently wake up feeling like I’m in traction. And these days calls are becoming more frequent from my parents when I have already headed to bed that lead to me getting up and going downstairs to deal with a need. It reminds me of when I had newborns and honestly, I know it can get much more frequent and a lot worse.

    It’s almost time to go home, but we are traveling on an adventure with our kids that is taking us many places back to back to back and has also led us to stay at a number of different places and to sleep in a series of different borrower beds.

    Flying does not easily allow for packing a pile of pillows so I have been trying to recreate my pillow pile to no avail. And every single morning on this trip without exception I wake up literally hours before I need to be awake finding that I need to get up right away because of new levels of the discomfort. Without the skillful arrangement of the aforementioned pillows and without a mattress similar to mine at home, I know I am planning to be up early and often throughout the night.

    Shout out to just the right pillows and, while we’re at it, to the best mattresses too! The primary caregivers and advocates need our rest and find it frequently disrupted or tough to come by due to other priorities and responsibilities (both expected and unexpected). When we lose we are very unlikely to get a chance to rest another time soon afterward.

    When you don’t get to sleep because of meeting another person’s needs it’s an amazing selfless act, but at the same time, it can take a significant toll. May the sandwiched and all caregivers and advocates find ways to get the very best sleep when we have time for it.

  • July 24, 2025

    The Keeper

    We checked into a hotel with an indoor water park in or at and our boys were already having the time of their lives with their dad on the big water slides while I, Mom, was holding everyone’s shoes and a big bag of things we thought we might need as there was no available table or chair in sight and we try to avoid at least some of the extra fees like the locker fee.

    Then this amazing fellow mom, a complete stranger, waived me over and said it was just her at her table and I was welcome to sit there. Perfect for keeping an eye on my daughter in the play areas for younger kiddos- front row seat.

    Then my husband (after going to the rental vehicle to locate our second son’s second croc) brought me more to hold and then asked “aren’t you going in?” He felt it was fine to just leave our stuff including cell phones and i wasn’t comfortable with that without a locker. Plus the other mom at the table had gotten up to get a double tube for our daughter and her daughter to ride around together and I didn’t want to leave her stuff unattended.

    Like a living coat rack my children have been hanging things on me or placing them in my hands since they could crawl and the load has only gotten heavier when there’s things to do. It seems to come with the territory that Mom is to hold this, watch this, do this and in many ways it’s a special honor, until the expectations overwhelm and the literal weight of things pile up. Sometimes it really is just a lot.

    Very thankful for other moms who jump in to ease my four ring circus sometimes in a pinch when it feels like even with my husband and I there’s not enough parenting, refereeing, and overseeing to go around.

    It felt nice to be able to just sit in this extra chair this evening as we’ll be doing plenty more over the weekend and because at home Mom has been handing me her things for years as well.

    If you’re a caregiver, I see you. If you feel like a human coat rack; I’m right there with you. And if you’re sandwiched and your parents or older loved ones are now placing their things in your hands in more ways than one; you’re not alone.

  • July 23, 2025

    Taken Care of in a Timely Manner

    Yesterday I found it concerning that when I finally called the right number for Medicare and asked about whether or not Mom’s new benefit period began now that she has been home (with no additional inpatient admissions) for over 60 days as required for her plan to reinstate a new series of available Medicare Part A days.

    The representative I spoke with yesterday seemed more knowledgeable and professional than some others I have spoken with in the past and she was able to tell me that her view of the system shows that Mom’s days should have come back now (other than those 60 lifetime days which never come back) given that I did understand correctly that she has been home for more than 60 days.

    However, this helpful representative admitted that though Mom should be in a new benefit period as of a few days back, the system does not show the availability of the new days on her end.

    Ok, so I am of course glad at this point that this representative is confirming for me what we suspected that Mom FINALLY was able to stay home for 60 plus days in a row without any inpatient admissions and her Part A benefits are returning in time for an upcoming surgery that is scheduled for Monday at the big hospital.

    So I explained to the helpful representative that the surgery is supposed to be first thing next week and I would like to confirm that her Part A benefits are reinstated now for a new benefits period as she has met the requirements. The helpful representative replied that she was escalating this to what I believe she called a “senior specialist”. She assured me that she was writing a thorough explanation of my question and the reasons for my question and I believe that she did. t

    Here’s what led me to feeling concerned yesterday. The helpful representative told me that the senior specialist had 7 business days to return my call. 7 business days?! It was Tuesday and the surgery was Monday!

    I expressed this concern to the helpful representative and she said that I could call Mom’s surgeon’s office and encourage them to call the provider line for confirmation.

    Seriously, how are patients, especially Seniors, doing all of this without someone advocating for them through plenty of inefficient steps?

    I thanked her and asked for her name. She gave it to me and I asked for her extension. She said she doesn’t have an extension or a call back number and I can just call the main number back and explain all of this again if the senior specialist does not return my call before the 7 business day window.

    Not an ideal option, but grateful to know that’s the way it is for future reference. So yesterday I called the big hospital’s outpatient surgery office and explained everything about the potential billing concerns if the new benefits period is not clearly started in the system. The woman who answered the phone listened to my whole explanation and then had to transfer me to a woman in the billing department whose voicemail answered my call. I explained everything yesterday on her voicemail and have not received a return call from her.

    It seems, this time, that all is working out for Mom. I was absolutely shocked and thrilled that the senior specialist returned my call today and I was available to answer right away! She couldn’t have been nicer and did confirm that Mom’s Part A is in a new benefit period as of a few days ago when Mom made it to 60 days at home without an inpatient admission during that time.

    Thankful to have that verbal confirmation and when we got disconnected because I am traveling and was on the road when she called, she called back and left a message trying to finish our call. Very kind of her to call back! Unfortunately I didn’t have reception and her message stated that I would just have to call the main number back again. No direct number or extension to call her back and finish our call.

    Grateful that I got what I needed at this time, but quite frankly I am waiting for the other shoe to drop.

  • July 15, 2025

    Rain Storms

    There has been so much rain in our area back home lately that some of the local parks have had to close or make modifications to the hike program we love due to heavy mud or down trees. Our swimming instructor sent an email that their pool, basement, and street had taken on so much water and were such a mess that our being away on vacation isn’t the only reason our daughter didn’t have swimming lessons today. Challenging weather comes and goes and can certainly be unpredictable from surprise storms to states of emergency, the worst does happen sometimes and we do not know when.

    Today we had the privilege of being part of a river rafting experience, mild when it came to rapids, but packed with the beauty of nature and the friendly hospitality. The experience was rain or shine and after a pleasant initial half hour the downpour that both weather apps and clouds in the sky told us to expect began. Delightfully the kids laughed through almost the entire experience as I ended up hunched over, protecting the cell phones in a bag close to me. And then some hail pounded down as well and all the while we continued to float along. Time didn’t stop and we were in the thick of the experience without a pause or a stop. Ponchos were offered to us by our guide (who was fantastic!), but we chose to persevere without. As I waited for what ended up being two rounds of storms to pass, I watched the delicate raindrops dance on the water and remarked at how beautiful they looked hitting the river.

    Watching those raindrops was quite grounding for me in those moments, as was the laughter and relaxed chatter between my children. On a day when I had to make a call to a family member’s doctors, regarding some test results, while navigating spotty cell reception as we traveled, this was a valuable pause. As the weather intruded upon our tour, a glimpse of peaceful, mindful radical acceptance and refocus came into play and provided the pause I needed to keep going.

    May we the sandwiched find that pause as we navigate each additional challenge that arises and may we always be able to see beauty in small and big ways while we keep going.

  • July 11, 2025

    No Sick Days

    When you’re sandwiched, there simply are no sick days, at list not without getting others (likely multiple others) to accommodate said sick days. This morning the provider at urgent care found red throats for Dad and I and a very red infected ear for me in addition to sinus infections and we headed home with prescriptions for antibiotics.

    However, while Dad came home to his awaiting bed (I will say that he grabbed Mom’s protein drink first and got up to make her soup at lunchtime), I came home to more outstanding work paperwork, packing, meal prep, laundry, and errands. My decision to head out right before noon to pick up my prescription and get my 12 year old to the library was questionable because, as I soon realized, everyone was out at that time. The drive thru was packed and someone I just couldn’t handle talking to while sick was in the inside line so did a 180 out of line and headed to the car to move onto the library, sans prescription.

    As I was pulling out of the pharmacy parking lot to satisfy my son’s need to read Anthony Horowitz, another medical call came in to get Mom scheduled for the appointment for the gastroenterology provider from the big hospital system who does apparently know about nutrition. I had the wherewithal to tell the caller I was driving and I needed her to pause while I merged and she was very nice and accommodating, but I scheduled that appointment, drove to the library, and came home to just keep swimming.

    Thankfully I had a virtual therapy session for myself today at just the right time after losing patience with the kids and simmering with self-loathing over my limits. Post therapy I self-reflective, but also self-compassionate and going to bed very early after taking my antibiotics and leaning on my husband to take care of bed time for our youngest kiddos. Now hopefully it’s a quiet evening in Mom and Dad’s suite or the cell will be ringing.

    There truly isn’t sick time while sandwiched. There is no relief for the primary caregivers and advocates, the sandwiched, Unless and Until someone chooses to provide backup. It’s a season without clocking out, sun up to sun down.

  • July 8, 2025

    Don’t Lose That Number

    When you are the advocate and caregiver and making the appointments, attempting to make sure the medical recommendations are followed by the patient at home, you are also likely the person who knows who all of the providers are that examined, treated or operated on your loved one. BUT, can you find the phone numbers of every provider? The correct ones? Trust me, you obviously don’t have a direct line to any provider unless you are extremely well-connected so do you know the office number of each provider, each specialist, each lab, each home health agency, each therapy program, each rehabilitation facility, and on and on and on.

    You need some kind of organized system to keep track of all of these providers and their phone numbers and the other facilities phone numbers. Trust me when I tell you that while some of it is fairly straightforward and easy to search for online, a lot of it (especially anything that began in inpatient) is not easily located with a simple online search. So often I’ve found what I thought was the number and then spent hours calling more numbers given by those who answered the phone when I called the wrong number until I finally get the right person to put the information I want to communicate into their system and then Inevitably comes more waiting while they have to call me back or have someone else call me back. Guess what often happens then? I either have to repeat myself yet again, after already repeating myself multiple times before that, or someone else has to call back Again. This round of medical issues hit the fan in mid-October 2024 and hasn’t quick since (though there are semi-calm moments in between, before the next storm) and I honestly have not had the time to put everything together well in a portable system in one place. I am much more of a pen and paper girl than a user of electronic systems, but they certainly have their place and portability is definitely tally mark for technology on the Pros/Cons list.

    For Mom there have now been two hospital systems that she is being treated by just since she and Dad moved in with my husband and I four years ago, leaving behind the county where she lived most of her life (besides her time in college) to live two hours away. Prior to that there were two hospital systems that treated her, with primary attention from one of them. These hospital systems do not share the same electronic medical record systems and while I am thankful that my husband knows how to “link” the different portals from the different hospital systems, it’s still a pain to try to get information from one hospital system to another. It’s definitely not a game of them playing well together. That’s for sure.

    So sometime last week (or sooner) I was warned that the home health agency of the small hospital system who had been coming to our home for Mom again for several weeks was down to providing PT (first OT did what they could do and then discharged her, then eventually nursing did as well, and then PT was talking about it) and I was told that when PT discharged Mom from home health then the mobile lab would have to go away also. Why? The surgeon at the big hospital wanted Mom’s bloodwork every two weeks to show whether or not she is nutritionally sound for surgery. Surgery is coming up. I took her to our local lab the first time which was a fiasco I wrote about previously because I took the handwritten prescription from the big hospital and handed it in at the lab and the PA or NP from the big hospital who works with their surgical team had never done a handwritten prescription for anything before and she did not include all of the necessary information so we had to call to get her to fax a new one and come back hours later, but we got the bloodwork done. Then before two more weeks past a very warm home healthcare nurse told us at our home that while home healthcare was working with Mom they could get us a mobile lab. I was thrilled because it’s one less thing I have to drive Mom out to and I have very little time available not to mention the fact that Mom’s bone on bone knees make getting in and out of the house and in and out of the car very challenging. The home health nurse said that she could call to get us a new order (yep, even though the outpatient lab we were using was part of the small hospital system AND those home healthcare nurses were from a group from EXACTLY THE SAME hospital system (the small hospital system) there is no way to go in their computer system to find the order faxed to the outpatient lab. No No No, instead we have to get a new order for EXACTLY THE SAME bloodwork as we had taken last week because now the mobile lab (who works for EXACTLY the same hospital system) is now taking the blood. The mobile lab drew Mom’s blood twice I believe and as we anticipated being discharged from home health and losing the mobile lab I talked to that friendly RN case manager who works on an outpatient basis from home and mentioned that I believed this was going to be an issue. She confirmed that a new order would be needed but made it seem easy and encouraged me to call her if there was an issue. Well, home health PT discharged my mom two days earlier than expected because Friday was July 4th, essentially ending my mom’s connection to home health on July 2nd. I called that RN case manager right away and left a message, but I haven’t heard from her since (and I did have the right number for her). I assume there is a holiday catch up back up. Anyway, on Monday I called the mobile lab and they said they need a whole new order so take the same blood work (which was ordered to be taken every two weeks and wasn’t “unordered”) from EXACTLY the Same Patient at our home because she is now needing it under “home bound status” rather than as part of services being provided for her from “home health.” I asked if the woman from the mobile lab would call the surgical team who ordered the bloodwork to get a new order. Nope, they don’t do that. My job. Just like everything else.

    I was fed up with being behind with my work and with everything around the house and I am packing for our family vacation with the kids so I asked Mom to call for herself to the outpatient lab in town to make sure they had the previous order for bloodwork which worked just fine before they dangled the shiny carrot of the mobile lab. So since we switched to the mobile lab, now there’s no order at the regular lab. We don’t have home health (so No Moblie Lab for us) and we ALSO can’t just go to the outpatient lab this week like everyone else. The bloodwork was supposed to be taken today and there was no one to take it.

    The number I couldn’t find was the outpatient office of the surgical team for the large hospital. I couldn’t find it easily online either and ended up leaving a message just after 4 PM today when they had just closed for the day asking if Mom still needs the bloodwork anymore and, if so, could they please send updated orders. I left the message on the voicemail of the surgery office that I know was across the hall from the one where Mom was seen, but I can’t find the right number so I am hoping the office where I did leave the message calls me back tomorrow so I can get the number for the correct office and in the meantime the days will tick by past when Mom was supposed to have the bloodwork. Very much hoping that none of this causes the surgery to be postponed. These days I am relating to the phrase “I can’t ‘adult’ anymore” right now.

  • July 7, 2025

    Do We Really Need This Appointment?

    Today I got up early to get my mom to an outpatient office of the big hospital system about 45 minutes out of town to establish care with the big hospital’s GI office. We were referred by the small hospital’s outpatient GI after the PA volleyed us to a physician and the physician had someone call to tell us Mom didn’t need that appointment (funny how that all happened after I questioned a bill following a surgeon nicking my mom, leading to her almost dying, and ending up in the ICU and having a wound vac among other things). I assured them repeatedly at that time that I was not taking any legal action, had not even consulted an attorney, and just wanted them to do something to make it right. Such a long story….but anyway, after a couple of long conversations with staff members about why the small hospital’s outpatient GI office essentially got rid of Mom as a patient (when we were only disputing a bill from the hospital stay following a surgeon’s error and our concerns were regarding some of the actions of the small hospital’s surgical team and not GI), we were referred to the office we went to today.

    And that provider, a nurse practitioner, though warm in demeanor, said almost nothing (absolutely nothing helpful), told us to follow the surgeon’s recommendations after letting me share a lot about Mom’s past surgical experiences at the small hospital and saying very little then also. She did recommend that we schedule with a PA they just hired who is more familiar with nutrition as the questions we were asking today were about options for food variety while Mom treads water on the waves of her ongoing liquid diet.

    As much as that felt like a pointless waste of time, we are hopeful that the next appointment to be scheduled, a meeting with the PA who we hear is nutrition savvy, and one truly never knows when we will need to have GI meds titrated or when there will be unexplained abdominal discomfort along the way. It’s wise to establish care with the offices you may need in the future. It did not feel like that though when we arrived and had to fill out a bunch of forms when we were just at another office (the big hospital’s surgery office) who should really have all of Mom’s info, not to mention that she has been in the big hospital now twice (once for a longer admission) and the other for an extended stay in the ED (out before the second midnight). Why isn’t this stuff in the hospital system’s computers yet? Make it make sense.

    I also spent plenty of time on the phone today because of a debacle with the small hospital system again regarding getting bloodwork every two weeks for the big hospital system. More on that tomorrow. And in addition to that I spent significant time on the phone as well with the small hospital system’s oncology office because Mom’s MRI shows a cyst on her pancreas that they want to keep an eye on. We definitely appreciate that, but all of the write-ups from previous scans, including the recent MRI talk about following up in a year, but suddenly there is full-on communication from this office like it needs to be done immediately, though the diagnosis details and prognosis have not changed a bit. Can we say, too many appointments are open so we need to call everyone who could possibly schedule now? Well, they did say that it’s just all about establishing care.

    Sometimes you end up thankful that you did establish care and you’re not a new patient.