Sandwiched Support

Tag: grief

  • August 11, 2025

    They Won’t Always Be There

    It might sound like it, but this is not a post about those who pass away or about the fact that we all will someday. Rather it is about those who are present for certain parts of our lives, sometimes in very significant ways, and then fade out of the picture.

    I often reminisce about my childhood, teen, and college years and a greater sense of closeness with cousins and with friends. Priceless memories.

    But quite possibly the strongest bonds have formed with fellow moms over the years. Many of them supported me through my most vulnerable experiences. Some truly understood each one. Most saw and heard me at a deeper level than I could imagine and some still do today.

    The part that is a gut punch though is that many of those who were my closest allies through c-sections, breastfeeding infections, sleep training, toddler tantrums, mommy and me play groups, postpartum anxiety and depression, potty-training and all that came with it all, are no longer closely doing this stage of life with me. And, though maybe it shouldn’t be, it’s unexpected and at times heartbreaking.

    There’s some grief and loneliness in finding yourself at sports practices and at classroom parties, at scout meetings, and at church activities without key members of your village. Don’t get me wrong, the mom tribe grows and expands and you have the privilege of casting a wide net to find more friends and more support and it’s an amazing thing. With an open heart your friendship energy can grow just like your love grows with each subsequent child’s entrance into the world. Your time and energy may be divided, but your love just multiplies as children arrive one after another. In this way you can make room in your life and your heart for new friends and supporters and you find them where your kids lead you, shepherding their own kids at the same place at the same time and you work on getting the kids together, or you run into them at mutual commitments, or you find yourself at many of the same birthday parties as you help your kids live their best lives and you end up celebrating life together.

    And some of it’s awkward at first. And some of it’s awkward all the time. And some of it’s just what you needed to get through that part of a season with that child or children who are growing up with their children.

    However, I miss the besties who were my go-to’s to swap babysitting or to let me vent through arguably the toughest years of my life thus far. Most haven’t intentionally pulled away that I know of, but any number of normal things have happened as part of the rhythm of life and they are at a distance now. Their kids attend a different school district or are home schooled and we are not on the same schedule. Their kids are in different activities from the ones we do or do them at different locations or on different teams. Their youngest children are older than mine so they are no longer in the stages I am in and have a different pace of life. Or their youngest children are younger than mine so their pace is very different also and it’s a whole different level of challenges that they are still facing that I am not and now I am facing challenges of having teenagers and they are not there yet and cannot relate. Four years ago we moved about 15 minutes away from where we lived before and to a different school district and because of what some of them have going on and the lifestyles they lead with their families, I might as well be much further away as they don’t really get to where I am and I often do not get back to where they are.

    One particularly painful goodbye was leaving the home we lived in for the early years of our children’s lives that was adjacent to a farm owned by extended family members of my husband and when we moved away from there we left second cousins behind. Our kids miss them very much and don’t see them as often as we all wish. Different schedules and responsibilities and choices for our families keep us busy and rarely together.

    I do get to see many of them sometimes. Usually every other week or monthly for most (some a little more often, some a lot less often), but this sandwiched stage gives us little flexibility. One dear friend pulled back to get her oldest daughter connected with more girls to play with even though she and my son were the best of friends. I doubt I tried hard enough to continue to get them together and their friendship seems to have downsized with indifference these days. The kids move on and make other connections. It’s normal.

    But it’s still sad and I still wish that I was swimming and hiking and heading to the play groups and jump gyms with those who did motherhood with me in the early years, at least sometimes. You can’t really go back, but I hope to meet the moms for more coffees.

  • June 20, 2025

    Fun Fact about the Founder and Family

    Though I’m an only child, mom has one sibling, an older sister by only 15 months. She is quite often there for us in many ways and her kids felt like older siblings while I was growing up. Dad has 6 siblings, all younger than he, 4 still living and the living aunts are the lifeblood of the family, arranging the remaining gatherings and stepping up in many ways to provide encouragement and to handle quite a bit. In Dad’s family two of his sisters were nurses and a brother was a pharmacist. Those in my family that work or have worked in the medical field make me believe in and hope for the excellence that could be; and they help me to know that that excellence does exist when systems that work meet effort on the part of the individual serving or treating the patient or training and working with the family.

    My in-laws are blessed with 3 siblings each and though all branches of our family have experienced losses, both my father-in-law and mother-in-law still have all 3 siblings each. I appreciated seeing big families on both sides in my husband’s life when I met him and married him and though nothing is perfect we have all been blessed by having the privilege to know and spend time with so many family members.

    There have been some reunions with some of the families over the years and I love to be part of them. However, I see how much time, energy, and effort goes into hosting and bringing everyone together so it’s rarely possible. But yet the time together is sweet and truly life-giving when it happens.

    A good friend of mine is sandwiched right now and if I told you how many of her own incredible children she and her husband are raising in 2025 you might not believe me. But she is caring for her mother-in-law while mothering her own children and pretty recently cared for her father-in-law as well in the most selfless manner. We were chatting this week about a few of the latest challenges for each of us and I mentioned that it must be very challenging for her and her husband to care for their own home while also caring for her mother-in-law’s home nearby and just acknowledging that I see how much they have taken on with such a willingness to serve and show compassion and to show their kids what it looks like to serve family. I mentioned that I am very grateful that my parents were willing to move in with our family and combine our homes into one home. It makes it far easier to manage one home and to provide care and transportation to appointments and meals and interact with home health from one home base. And I am certainly grateful that heading back to bed in my own home is only steps away from where I run to if they need me. My friend and I talked about how much easier it is to do this because I am an only child and there are no other children, children-in-law, or grandchildren for my parents to consider, to host, to allow a seat at the decision-making table. While the advocating alone is tough, not to mention managing the phone calls and appointments and medications and diet specifications and more, it’s a bit of a blessing in disguise that I don’t have to involve anyone else as we might not be on the same page and that could certainly add another layer of challenges.

  • June 10, 2025

    Stop the Ride! I Want to Get Off!

    While Sandwiched it can feel like an endless spinning hamster wheel set to Hot Mess Express.

    It’s summer and Mom ended up in the ED again yesterday at the large hospital, first time through the ED there with yet another blockage. 3 days to the day after being discharged from her direct hospital to hospital admit. It’s getting close to 8 months since we began this round of revolving door hospitalizations. Dad ditched his golf game to get Mom there because we are 45 minutes away and we are done letting the ambulance take her to the small hospital if we can avoid it. A tiny win was that Dad spent the night in the ED for the team this time. Mom has had a lot of therapy and has lost a bunch of extra pounds (not the healthy way) and as a result she is stronger in some ways and they just saw her there 3 weeks ago so I was able to :sit” this one out. One tiny win is that I could wake up around 7 AM instead of the usual 6 AM because there’s no school bus to miss right now and my role as the family uber driver wasn’t scheduled to leave the driveway until after 8 AM. So I let my feet hit the floor after Mom’s call came through at 6:45 AM, obediently placing me on speaker on her cell phone which is really the only way I get to speak with any member of the surgical team. This resident told me she’d call me. She didn’t. So I was up!

    So of course “but first coffee” and then I got an Urgent email from the organizer of my youngest’s camp deciding to start it a half hour late to avoid the rain, meanwhile it said in the email confirmation to wear sneakers instead of cleats so they could go inside in case of rain. Why complain? But actually I ended up having to spend my own bathroom time “urgently” texting my hairapist whose child also attends the camp asking for a favor. Fellow moms in your village are non-negotiable when you’re on the Hot Mess Express. And casting a wide net to expand and grow that village can keep you from being flung from hamster wheel most days. She immediately agreed to drive my youngest to camp since I could not do 9 AM drop off at two camp locations simultaneously and, as he is able to do most mornings, my husband peaced-out early with a spring in his step following the yellow brick road of his routine to the land of locked-in productivity where only adults interrupt you (sometimes he helps when he works from home, often he is involved when not working, and in his defense he works full-time and is the primary provider…but his privileges are different…he steps off the hamster wheel Often….and one could debate whether he really ever has experienced being on it at all).

    My village grows often and the fellow moms (and some others) in it are incredible. Yesterday I forgot the shin guards and today I forgot a key piece of sports equipment and a Super Mama who I texted the camp flyer too, but didn’t know she had signed up, showed right up and handed my child just what was needed no strings attached. Another Super Mama texted me all about it as I pulled into the garage and laid eyes on the one I had forgotten to send along. Spent a few minutes sending the love and gratitude and feeling it.

    Short-lived….thought I might get some work notes done. Sent an email. Spent time on the phone with the hospital and answering calls from other medical providers’ offices. Spent time sorting through piles with my saint of a cleaning person because we were alone in the house with no one but the phone to interrupt and she knows I am buried in everything I have to deal with and she’s younger and taller and does not get winded taking a million trips up and down our staircases and doesn’t need a stool to reach my kids’ highest closet racks. We made a dent and she brings the enthusiasm for organization. I apologize profusely for the mess and truthfully assert that I would rather facilitate a room full of people in crisis than sort (and especially than donate) the things. Right now we can only afford for her to clean sections of the house during her few hours each week OR to have her help me organize. Not both. Not more. But we know how incredibly privileged that makes us. To have anyone….a village volunteer or a treasured hired helper…is more than so many of the Sandwiched get. I get it. But I know I don’t really get it, not everyone’s experience I don’t. We worked for all of camp and my husband couldn’t even tell what I had gotten done. But I saw it.

    Back to find my youngest beaming and chattering about all the fun she had at camp and all of the great coaches and friends and I got a chance to be the village for 5 minutes hanging out with the child of my hairapist when she was 5 minutes behind and the high schooler camp helpers jetted as quickly as they could. It was a tiny privilege to stand with her daughter as they all stood around for me for 17 minutes the day before while I tried to get from one camp to another. Today my Super Mom-in-Law was previously scheduled to run kids to and from camp while I drove Mom to an outpatient appointment near the big hospital. That fell off the list as Mom was lifted into the hospital bed, but Super Mom-in-Law was still willing to pick up the oldest 3 from camp at the same exact time when I had to be there to pick up my youngest, gave her a packed lunch in the car, and drove her to the loving home of one of my Bestie Super Mamas who kept her all afternoon while I met with clients online and she then took my youngest to a rehearsal that her kiddos also participate in and we all ended the day this week as volunteers at an evening kids’ event (which thankfully includes dinner this week made by more parents from the village). Tomorrow she will drop off her crew and I will entertain, feed em, and mom lyft to rehearsal and then to the kiddo event. How do others who are Sandwiched manage if there is no village?

    Couple clients canceled and I was able to make calls, answer emails, and manage to start a series of calls I had to make to secure Mom’s discharge from the large hospital tonight before two midnights had passed (future blog post about the two midnights and playing the Medicare game). The surgeons want her stronger before elective surgery and are not going to operate even though she is very uncomfortable because it’s not emergent again yet. She received the treatment she was going to get to stabilize her and was still being observed in a section of the ED so we could bring her home to continue on her liquid diet and await elective surgery before digging into more of her limited lifetime Medicare days. She is about out of inpatient Medicare days because she hasn’t been home for 60 straight days in almost 8 months. Some days were spent at the skilled nursing level of care (comes out of a different Medicare payment bucket) but most were in the inpatient hospital or at intensive rehab facilities (which count as being in an inpatient hospital). Because we left the kiddo event a little early and my in-laws brought the kids home in our vehicle so there were enough seats for our crew, and picked her up before the second midnight from the ED at the large hospital, she did not lose her 3 weeks she has put together at home. We do not have to start over again counting from the beginning. And we are jogging along toward that 60 day at home mark when many of her Medicare days re-up. What a system.

    Settled Mom with Dad after a fairly smooth lap around another discharge, set off the load of wash I began loading into the washer yesterday and pulled up a chair to blog it out. Now maybe I’ll cut into the little sleep I rarely get enough of to watch a favorite show and feel like I am just me for a little while. Maybe someone who needs me will wake me up. Maybe I should fall right to sleep in case that happens. Maybe I don’t care because I want to watch my show a little bit because when running on the hamster wheel set to hot mess express while Sandwiched is a real trip and I can’t seem to Stop the Ride even though I want to get off.

  • 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.