Sandwiched Support

Tag: surgery

  • August 20, 2025

    No Calm Before the Storm

    Mom’s surgery is Monday and my kids go back to school tomorrow (one went back today for a half day intro to the high school- went well) and I am doing my best to celebrate 3 of my kids’ summer birthdays with all I’ve got and it’s not always landing the way I hoped as I am out of energy from doing all the sandwiched primary caregiver and advocate does while also working part-time and being the full-time summer camp counselor, tour guide, cruise director (if the cruise is my SUV or the minivan we rode in on our trip), mediator, wrangler, and personal chef of those I love the most and am also most frustrated with these days.

    Burnout is an understatement, but there are the most fulfilling glimpses of what I hear that I will one day miss the most. When my efforts land well and a plan comes together and, dare I say, when someone appreciates it, the heavens open and I find it all worthwhile.

    But there are many hours and even days when this is not even close to being the case and it’s challenging to say the least. Today was a day of higher than possible expectations on my part. What I imagined accomplishing was absolutely unrealistic and I ended up in tears apologizing to my kids that on their last day of summer I could not make all that we talked about happen.

    The lemonade was that we all agreed to keep enjoying in the days to come, but that turned sour again when I found yet another trip to two stores to go find school supplies that I forgot to grab totally overwhelming after my son’s soccer practice and a day full of not getting to what I wanted to get to. I cried it out repeatedly today and ended up in several rants, most of which I’m not proud of, but at the same time it is also true that I want to genuinely express that motherhood, with or without the sandwiched situation,

    Tomorrow the wheels on the bus will go round and round and I will have about 8 hours (with Dad helping with the buses) to get a whole lot done for work, to write clues for first day treasure hunts, and to prepare for two small family gatherings I’m fitting in before Monday’s surgery for Mom.

    There will be no calm before the storm of advocating for Mom medically returns.

  • 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 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 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.

  • 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.