Sandwiched Support

Tag: writing

  • June 16, 2025

    Um, Never Mind

    So this morning my mom got up at 5:30 AM (and she is not a morning person) to be ready and in the car for me to take her to an echocardiogram at the small hospital’s outpatient cardiac center. It was a quick check up precaution as a surgeon nicked her in early February and her BP tanked to 40 and she experienced ischemia. We were told the ischemia was likely to not cause permanent damage, but we also hope the big hospital’s surgeons will operate on her in August to remove the rest of the scar tissue inside that seems to be causing the repeated blockages so an updated echo is helpful for that as well.

    Anytime I take Mom to an appointment we need to get her into her older, small car because she is unable to get into our SUVs because of how high they are. She’s 5 feet half an inch tall and has bone on bone knees (updated xray last week confirmed that they are some of the worst the orthopedic surgeon has seen and that they both need to be replace which we knew) so getting her in the car is a whole thing. Then getting the wheelchair once we arrive and getting her out and into the wheelchair is a whole other thing, so we leave plenty of time.

    The echo involved an upper body change into a gown and then getting mom up onto a hospital bed. Things were going well until the technician administering the echo made a big announcement to us that she would be putting in an IV for contrast to get better pictures of a certain area. It was unexpected because outside of the hospital setting we don’t remember Mom getting an IV outpatient or having to have the contrast for an echo (at least not outpatient) so that was a little unsettling/surprising, but we took a deep breath and nodded along. Well Mom has become somewhat of a tough stick and the technician tried several times to find a vein that would be suitable to put in the IV and add the contrast. When after several tries she simply said never mind, that she would take a few more images and it is probably good enough and she does not want to hurt my mom, “well ok” I said, “But are the images with the contrast needed? If so, should we go over to the hospital where there is an IV team to get them?” Her response was that it is a Monday morning and the hospital is not an option for us.

    I am not condemning her in any way. I am glad she stopped sticking Mom while she was ahead, when she recognized her own limits and the limits of the situation, but why isn’t there a backup for situations like this? Can we have a nursing supervisor who is IV team certified to get that IV in so we can take the images while we are here? Mom cannot possibly be the only outpatient echo patient who is a tough stick. Where’s the back up? Also, Mom’s test results came back as suspected, very few issues (just monitoring needed), but I am left wondering if they missed something because we didn’t do the contrast. I am trying to pick my battles with the small hospital because they are the closest to our home; it’s our family’s local hospital, but seriously, where is the clear communication about why she needed that contrast? To get a better image of what?

    If I had pushed, would she, as a technician, have been able to give us more info? Often they are vague because they are not the provider. We’ll wait for now to have the provider’s office call us with the results and advise us. And again, we definitely were not looking for unnecessary sticking but we came here, after quite the process, and got Mom on the table. Can we get the job done? Is it never mind, you don’t need it? Or will we be called back in, adding more to my schedule (which already feels like the puzzle of the century) and more discomfort to Mom to get back to the facility and back on the table for another test?

    Hopefully they have what they need, but you simply cannot make this up. Dear small hospital, please get your staff the back up they need and train them to communicate what is necessary and helpful in a way that gives the patient and family a true picture of what is going on, why we are taking these steps, and what the next steps are.

    Since then later this morning I received a call from the mobile lab about coming tomorrow to do the every two week blood draw that the big hospital wants before Mom goes to her outpatient appointment with those surgeons next week. We went to the lab for the first blood draw with the little paper prescription two weeks ago on Tuesday. The amazing home health nurse listened and found out that it’s tough to get Mom to the lab every 2 weeks and since Mom has home health she got us set up with the mobile lab and they called right on time to come 2 weeks after what they believed was the last known blood draw as planned. However, Mom’s setback last week brought her to the big hospital’s ED on Tuesday and thankfully we picked her up from the ED Wednesday. However, blood was drawn during that time, so this morning I realized that maybe we don’t need to have blood drawn tomorrow, maybe it’s to be 2 weeks from when she last had it drawn at the big hospital. So I wrote down the mobile lab’s phone number (thankful I didn’t forget to do that), then called the number associated with Mom’s surgical outpatient appointment next week (waited on hold, pressed the right number after listening to a list of possibilities, and then was told that I needed to be transferred to a voicemail for the nurses for this practice and they would get back to me). There does not appear to be a simple way to find the answer to a fairly simple question.

    And to add to it- I spent 28 minutes on the phone today with the small hospital system’s pediatric office to schedule my four children’s wellness visits. That was a whole thing because our insurance told me in the past that our children can have more than one wellness visit in a year because sometimes scheduling works best right before a year has passed before the last visit occurred. My understanding is that that is a rare privilege to have that coverage. Nothing has changed with our coverage, but the office is now telling me that even though you can have more than one in a calendar year, so you can schedule before it’s been a year since the last appointment, you have to schedule only one visit while your child is a certain age, so you have to make sure the next visit is after their next birthday. I asked if he was sure that this was confirmed and he told me he cannot confirm anything and I need to call the number on the back of my insurance card. Not wanting to have to bother calling (because I know I did that a few years ago and at that time the insurance company confirmed that I could schedule more than one wellness visit in a year), I scheduled the appointments so that each child will have turned the next age just prior to each next appointment. I know for a fact that Many have it worse. There’s gotta be better processes for us all. SMH.

  • June 13, 2025

    Fun Fact about the Founder & Family

    Each time Mom’s discharge from a hospital is being planned they ask her who she has at home. She is always very pleased to share about her 4 grandchildren, son-in-law, daughter, and husband (I think in that order), but the one bonus that brings an extra smile to her face is our golden doodle. She loves our dog and our dog loves all of us so well.

    She’s the one who welcomes Mom home by parking herself right beside her or behind her wheelchair. She is loyal and loves with all of her heart and sloppy kisses. She thinks everyone is here to see her and jumps up on them to greet them. We put her out back when home health and new friends arrive until they get to know each other.

    She’s the one everyone loves to sit with and the one everyone loves to complain about when she makes a mess. We rarely feel lonely in such a full house, but with her around it’s impossible to find yourself completely alone unless she’s on the other side of a door from you.

    She loves to play and go for walks and put herself right next to one of her favorite humans and create a snuggle sandwich. She got a clean bill of health recently and for that we are thankful. Trips to the vet with her are lively as can be and nearly always threaten to knock me over. This last time I was encouraged to purchase some kind of harness because the leash is not really doing the trick.

    Seeing her throw herself into each exciting moment with all four paws is really something to experience as is getting to pet her soft hair that does not shed. A perfect match this our high demand, high maintenance era.

  • June 12, 2025

    Delegate?

    While sandwiched it’s wise to ask for help if you can. Or to hire help if you can. Or to sometimes squeeze a little support out of those you are supporting. I haven’t had a lot of choices in this department for the big things. As an only child, unless my husband feels like stepping in (especially when it comes to medical advocacy for my parents) it’s me. No one to volley to. I am, however, blessed with medical professionals on both sides of my extended family and among friends who are only a text or call away and have been absolutely invaluable primarily from a distance. But basically when it comes to certain things, it absolutely is me and only me.

    With the kids there are more takers. My in-laws have had them often and even my parents can and will still do what they can. Dad helps with some of the morning and afternoon routines and one incredibly significant help my Mom provides, even when she is not feeling great, is securing my daughter’s hair in whatever style has been assigned for her dance performance. Securing bobby pins in a style just right is not in my wheelhouse. Never before have I heard more about how I should hire people to do more for us. Um, that’s quite complicated when it’s just not affordable or when tough choices would have to be made in order to sub something out. There are some things that are tough to sacrifice, especially when we work as hard as we do, volunteer, care give. advocate, and taxi everyone around while bringing the fan club energy.

    At the times when I cannot get help I keep going because it has to get done. I try to hydrate, caffeinate, increase protein, and give myself little breaks when it works. But it is honestly the case that sometimes So much is back to back and nothing is as expected and it’s just one thing after another without the opportunity for a break. In these trying times I am asking myself, “Does it have to be me?”

    Sometimes it’s simply an annoying choice of whether or not we are going to miss out because I cannot be in multiple places at once and my husband is working or he is declining to help because it is not something he values (usually something fun with the kids that costs money). Other times we are all driving kids around at once, including my in-laws. And yet other times, I am driving 5 minutes home to catch up on work notes because three of my family members are already volunteering at the event we ran this week for kiddos and I have already done my part. The guilt sets in, questioning whether I should stay until the end, but it is all running like a well-oiled machine and I am able to step back and get something accomplished in a quiet house for a short time.

    There are volunteer commitments I am seriously thinking of bowing out of because others can and they may not if I don’t step aside and leave it to them. There is so much I want to do but the sleep deprivation is catching up and I am not close to bringing my best to my family and loved ones when I am hanging by a thread. So often there is no rest for the weary, especially caregivers, but other times there are possible escapes, possibly ways to pass on something or pass something on.

    If you can, hand it over to another willing supporter. If not, consider if it’s something that, if dropped, will not necessarily lead to significant long-term issues. Sometimes when you stop filling a need, someone else steps in that would not have.

    And sometimes you just have to step away while everything’s ok. Close the laptop and go get some sleep. Turn around and exit in order to wrap up some work tasks. Take a couple of hours to go do anything you feel like doing while all is stable and everyone is occupied.

    It’s fine until it’s not and when there is some flexibility in terms of who can take care of it, try not to have it be you again. Aiming for self-care is a whole other level of complicated, here we are aiming for some self-preservation by doing what is needed and ducking out when you were expected, but someone else can and will pick up the slack if you don’t.

  • June 11, 2025

    2 Midnights

    This week’s posts have been about overload and that’s such a significant part of the Sandwich generation, but today I want to highlight a stand out experience with the hospital system this week that I truly hope can help others better advocate for their loved ones.

    We got to work with the Medicare 2 midnights rule for the first time this week with Mom. We are learning to find our way with very little guidance through a system that seems to be the furthest from user friendly. Let me be your guide as you prepare to support your loved ones in the future!

    Long story short this time it was a large blockage much further down than recently and I just don’t know how that happened because she’s been on a liquid diet. The surgeons said earlier yesterday that they could admit her to an observation area of the ED and get her bowel regimen figured out, but that they are still not going to operate at this time and the plan remains the same (go home on liquid diet and await elective surgery probably in August).

    BUT I didn’t realize (and THANK GOODNESS my husband understands this insurance stuff better than I do and was paying attention), that she was STILL in the ED last evening and it had only been ONE MIDNIGHT! I talked to a Utlization Review expert who works for the big hospital and she confirmed (which my husband suspected) that if we picked her up before midnight last night, which we did, it’s before the “two midnights rule” so then she DOESN’T lose her 3 weeks at home!!!!!!!

    Let me explain- Mom’s Medicare plan has a certain number of inpatient stay days. These days covered her many inpatient hospitalizations and also were used anytime she was in an intensive rehab instead of going directly home from the hospital with home health or instead of going to a skilled nursing facility for rehab (this is billed out of a different “bucket” of Medicare funds). We knew very little and along the way one of the small hospital’s staff members (I believe a social worker, but I have no idea who it was) told me that inpatient days were unlimited so I fought hard for Mom to stay admitted through an infection and unexplained pain and several stretches of time when she was unable to eat. If I had known we were burning through limited days I would have handled things differently. She certainly should have been in the hospital during those times, but it’s clear that we cannot always get and maintain the care that is needed for as long as it is needed. There are definitely limits. I also was under the impression that the intensive rehabs were paid from the same bucket of as the skilled nursing facilities. I also spent an hour and 20 minutes one day not long ago on the phone directly with Medicare during this journey and was given completely wrong information after a long conversation where I asked very specific questions, sharing my knowledge and Literally having someone who works for Medicare stating the complete wrong thing about my Mom’s plan and which parts of Medicare pay for each level of care. Because she used so many inpatient days or days that count as inpatient (part of this was after a surgeon nicked her and she had to go on a wound vac, prolonging her inpatient stay days) she is now well into what are her 60 lifetime days for inpatient and once those are gone, they are gone. The other days will re-up every time she is able to be home for 60 days straight. Being in a skilled nursing center for rehab, while out of the hospital does not count as being home. So even though she had no readmits for more than 20 day while in her second skilled nursing facility for rehab, none of those out of hospital days counted toward the 60 at-home days she needs to put together for her inpatient days to re-up.

    So yesterday I figured this out at like 4:20 PM when my husband re-explained it (we’ve never been able to discharge ahead of the two midnights while still in an ED before) so I started frantically calling the staff at the big hospital, and after talking with like 5 people I got my message across and I spoke to the surgical team and they said if she ate her liquid dinner without any problems they would check on her after dinner. It worked out and my husband and I were able to go get her. She was still on Medicare Part B so we are still on 3 weeks at home and counting as we try to get to 60 days straight at home for Medicare A benefits to re-up. Shout out to my mom’s AMAZING first shift nurse yesterday in the ED who sprung into action when I called and got us Everyone’s attention that we needed to get her out and home in time. Now we wait and hope again and it looks like home health can restart pretty seamlessly!

  • 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.

  • June 9, 2025

    Catch 22

    The sandwich generation’s primary caregivers live in a series of these. We often find ourselves in a no-win situation.

    Some recent ones for me include spending a bunch of time lining up summer camps that all 4 of my kids can go to for parts of the day so that we are not spending too much on full-day camps that we cannot afford because I only work part-time because I can’t work full-time and pay someone enough to do all the things I try and fail to do in a day. So I spend time I don’t have finding and registering for camps that might interest my kids of varying ages. For 3 days of this week we found one semi-affordable half day camp that would teach my oldest, second, and third child simultaneously while my youngest attends a separate camp with friends. I used time I didn’t have while paperwork for work is overdue so that I could gain some quiet time to catch up on my paperwork.

    After two drop-offs, one with the leader showing up late, I hurried home to lock in with my paperwork. Dad moved his golf day from tomorrow to today because it will rain tomorrow. I want him less stressed and as healthy as he can be, but that meant I had to let the home health OT in. Home health is to free me up to do my work, but she parked me out of my driveway, offered to move while she hung on the phone and eventually came inside. No locking in for me. After I overheard her talking to my mom about discharge I got up and had one of many conversations for clarification and education. Then I got Mom her water and checked if she needed anything else while explaining that my job needs my notes done and I need to do them while the house is quiet. Got one note done before Mom started texting and calling me with her needs. In less than 3 hours’ paid time I had to rush out stressed as can be to two camp pick ups because I got practically nothing done again except for all of what feels like thankless labor for which I am the default family member. Mom’s calling me while I am trying to drive, my kids are screaming and fighting with one another when they’ve only been in the car 3 minutes. I completely lose my patience with them, I get home and work all afternoon with online clients while my kids fend for themselves under the supervision of my teen and preteen because there’s no more money for camp. And there would not have been any money for camp or the vacation we are going to take if I did not see those clients.

    And I want to meet with the clients. After my family, the work I do with my clients is the greatest honor of my life. But if I didn’t work I would be able to give more attention to the generations around me and might do so with less rush, less stress. But I’ve been there, when I do that a light in me dims and threatens to go out. I miss work when I don’t work. And when I have too much work and cannot be there for family in the major things from advocating medically to being there for the school events and making sure they get to participate in the activities they want to be part of, it doesn’t feel right either. And if there’s no work there’s no money for the extras that we enjoy together. But it feels like I am always presented with no really good choices. If I spend the time on the holidays and the parties and the activities, the laundry and the clutter threaten to choke the life out of my home and this is close to the current reality. If I delegate, which I am blessed to do with the housecleaning, there are many questions about how many hours I need to fit in at work to cover it.

    If I am the one who sits in the ED with Mom to advocate and the doctors do nothing major all night and then I am exhausted all day, no one is taking over with the kids and the laundry and the paperwork for work. If Dad goes and sits there we might risk he and Mom forgetting to verbalize an important detail. If I get home health I have to let them in and wonder when they are coming, with outpatient appointments for Mom I can schedule them but have to clear my morning or afternoon to be the one to take her. If I work or care for the family the chores do not get done.

    Still not sure how all of these categories became the primary responsibility of one. Others are sometimes willing to help, including my husband and Dad, but if not, it’s all me.

  • June 5, 2025

    School’s Out, It’s Funeral Season

    So apparently part of sandwich generation life is taking pictures of your growing kids, holding signs, ending another school year, and experiencing All the Feels while you enter summer with them- tears in your eyes as your heart swells with pride, experiencing a different kind of exhaustion as you try to fit in work so that you can play when they play and accompany them on as many adventures as possible before the school bus arrives again and you wonder where the summer went again.

    And at the same time it is also true that while your friends’ kids, or maybe your own kids are graduating (or at least working toward some important goals as they graduate to the next school year), you’re attending more funerals, with tears in your eyes, of adults that were important in your life when you were meeting milestones or adult loved ones of your close friends. My parents in their mid 70s and dealing with health issues, but we are truly grateful for the time we get with them, a bonus of them living with us. But I am attending more funerals these days and it didn’t occur to me that that was coming. I attended my aunt’s funeral. She was my godmother and I remember feeling like I hit the lottery when I was invited to swim in her pool as a child. When she lived with my parents through part of her battle with cancer, it was very special to watch her connect with my kids during our visits. One of my best childhood friends texted another friend and I very recently to let us know she was in the midst of decision-making with her mom about whether or not she was going to go on hospice and her mom decided to proceed with it (but she also learned that if her mom improves significantly within a certain period of time she can come off of hospice. We’re learning every day). One of my very first best friends had to make the impossible decision to take her mom off of life support and we reconnected as my family learned she had passed, but I could not travel to the funeral as a surgery I underwent was too recent.

    Today Dad drove me to attend my uncle’s funeral. He was my uncle during my childhood and he was a great one. Divorce led to me not seeing him as often, but it was very meaningful to me to hug my cousins (his children) and his grandchildren and pay my respects at a celebration of his life where they truly honored him. Seeing the photo slideshow brought back a rush of memories of the home he shared with my aunt that was just a street away from the house where I grew up. Every piece of furniture and home decor in the background awakened the best thoughts of family gatherings and holidays. One of the places where I learned about the warmth of family was when visiting that home. Hearing his children and grandchildren and friends, including my dad, speak about his character and the positive way he lived his life was special, but surreal. It is unbelievable to me how quickly life feels like it goes and I experienced decades knowing him. But it goes so fast. And you never know. And even when you know it’s coming, as was true this time (he battled Cancer and was on hospice), it’s not easier, iykyk, and you still can’t predict when you will be in the funeral home, the church, the chosen place of sharing memories.

    The sandwich generation hits different. The experiences are so diverse and can truly feel like ping-ponging back and forth from grief to hope, loss to abundance, spent energy to the fullest heart, and SO much can be true all at once. Adulting next level. A Gen tug of war. It’s all happening now and we’re responsible for all of it happening smoothly.

  • June 3, 2025

    And Sometimes we Crash Out

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

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

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

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

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

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

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

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

  • May 20, 2025

    Hospital Hint: Talking with Patient Experience

    Sometimes communication with Patient Experience starts with a hospital survey or a hotline for customer suggestions or complaints, but if you want to provide constructive feedback directly to an individual whose job it is to listen to that feedback, the Patient Experience staff members are hired to do just that. I was told by the head of Patient Experience that the suggestions we make can be sent to those who oversee the relevant department, but whether the suggestions lead to any true, lasting change remains to be seen.

    After a survey I filled out related to an incomplete initial triage exam where the original provider did not even look at my mom’s skin infection which was the presenting condition, followed by a 10 hour wait in the ED waiting room with my mom, followed by being sent home by the ED providers immediately without treatment, I received a phone call essentially explaining why they will not be taking any of my suggestions. I had suggested that the provider who initially examined my mom let her know that it’s unlikely that the doctors will see her wound as something that needs to be treated outside of the outpatient setting and to be given the option of waiting 10 hours in the ED for an attending physician to send you home, or of signing one’s self out (after hearing that you probably will not receive treatment) and stating you are willing to follow up outpatient. It would be great if someone there would even get you scheduled with outpatient on your way out. I truly wonder if it was worth it to fill out the survey and I am disappointed by how much time I spent on the phone calls to then ultimately receive the gently dismissive feedback. If you’re filling out the survey to vent, you might get a call where you feel listened to. If you’re calling to seek change, the survey did not lead to much in our experience. Has a feedback survey led to any changes in your experience?

    From making two lengthy calls to the feedback hotline of our closest hospital I learned that entry-level employees are answering these calls and tend to say things at the end of the call that imply that the reason you called was just to vent. I like to ask my children and my clients, “Are we venting or solving?” when they share a concern with me. From the feedback hotline, I got a very strong “venting but not solving” vibe. Hopefully some of what I said at least leads to some conversations between the powers that be, but it seems that it’s more about herding the venting to one place where it can feel seen and heard and tidily dismissed and forgotten. Have you found this to be the case when you call the feedback hotline? I wonder what it looks like when the feedback data is entered into the computer and is elevated to each department. Does it resemble what the patient or family member said or does it lose meaning steadily as it is whispered down the alley?

    I had the best experience thus far speaking directly with patient experience representatives. They certainly make you feel seen and heard and they tell you where they plan to escalate your feedback to and what they plan to do. Sadly, even two hours meeting in person with the head of Patient Experience, and a number of phone calls, did not seem to lead to any real meaningful results even after 7 months of repeat admissions and a surgeon’s error. However, these individuals do seem to try and occasionally when they seek out information, you get a few, but don’t bother looking for anything clinical from them or any significant direct communication with the medical or surgical team. They can find you some resources and pass along your comments, but as far as any real power to make changes, it does not seem so. I also wonder which one of the many things I said did they choose to pass along? I urge you to ask for clarification on what they are passing on and what they are not.