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.
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.
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.
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.
Mom was in the hospital for about a week following a seemingly successful initial surgery (the initial surgery of this journey). She proudly shared and continues to share with providers and anyone who will listen how she managed to get through 75 years of her life with only wisdom teeth surgery. Now she sported a vessel loop closure, something new that allowed the incision area to be pulled together gently and gradually and after about a week post-surgery (and my difficult first encounter with who was to be Mom’s next surgeon) she was deemed ready for discharge to her very first experience with a Skilled Nursing Facility for rehab. It was all of our first experience with a real nursing home for anyone in my parents’ generation. Most recently I visited two of my husband’s grandparents in nursing homes and quite frankly I had moved my parents in in part to avoid setting foot in the awkward sadness that I have experienced in many of those facilities.
Unfortunately it quickly became clear that the staff at this first skilled nursing facility Mom was discharged to for rehab, did not appear to know how to care for her incision area as a whole, a process called “flossing” the vessel loops. The nurse practitioner who oversees the skilled nursing facility where Mom was admitted completely geeked out over the vessel loops saying he had not yet seen any and was very interested in getting to see what we assumed must be one of the latest ways to close a surgical incision in person.
Fast forward approximately 4 days later, Mom was right back through the ED with a fever and full-on infection of her Mesentery. Infections are a natural risk of surgery I have been reminded ad-nauseum and also the “flossing” logs from that initial facility show that if the nursing assistants or nurses or anyone else on staff there were flossing the vessel loops as often as they were supposed to be flossed they were not documenting doing so. I suspect the reason for the lack of flossing was that probably literally no one trained them to do so. I wonder if they were even all told about it, especially since Mom arrived on a Thursday night and was out the door with an infection by Tuesday. Between Dad and I we visited every day while Mom was in the initial skilled nursing facility. I introduced myself to the charge nurse admitting her, to the nurse practitioner, to the OT (was thrilled to see her there Friday morning, a fellow school district mom and friend), to every nurse, to the Social worker, to the head of PT. We stayed close and made ourselves visible (which I recommend that you do), but there was still what I would refer to as a shortage in services particularly over the weekend.
Thankful Mom got a bed there when she did at a facility rated with 3 Medicare Stars. The 4 star facilities and one 5 star would not or could not take her for various reasons which I will describe further in future posts. Keep at the forefront of your mind that if your loved one needs aftercare it is not always easy to come by and the fact that it’s complicated is a gross understatement, especially in the case of a medically complex situation.
I am certainly not stating that the Mom’s first 4 days at a skilled nursing center or anything that happened there were to blame for the roaring infection she went back into ED with. Mom’s case is medically complex and the makings of an infection could have started during or soon after the surgery or during her week of recovery in the hospital and we will never know the cause for sure. However, what I am saying is that I strongly suspect that the surgical team who placed those vessel loops and then monitored Mom through discharge did not adequately make sure they communicated how to floss those vessel loops to the actual staff members that were going to be flossing them. Again, correlation does not mean causation, but what might be on your loved one’s discharge plan that is not being carried out by a third party caregiver correctly and could this be because of a lack of thorough communication?
Hospital Hints:
Maybe things are missed every day on discharge plans that are of no consequence, but I urge you as your loved one’s advocate to familiarize yourself with the discharge plan and how each direction is to be carried out and by whom and follow up to make sure things are being carried out as intended.
Also, did you know that hospitals and physicians can be penalized and sometimes not paid by Medicare and other managed care companies if their patients end up with an infection or if they are readmitted for that or another reason? I am just learning this and know very little about it as of yet, but what I will tell you is that for one month a team of surgeons and their residents did not miss a beat repeatedly insisting that Mom’s diagnosis was “inflammation of the messentery” and Never Ever Ever Infection. Her admission paperwork in the ED says sepsis and she was being treated prophylactically with antibiotics as she had a fever and an elevated white count. For days, weeks, and ultimately over a month they could not get the infection under control and involved Infectious Disease who was treating my mom with multiple antibiotics, but as the family member when I asked if my mom had an infection, the surgical team always said “no inflammation.” Multiple surgical residents and surgical attending physicians at the small hospital said that for them to diagnose my mom with an infection they would have to open her back up surgically and take out a sample of the inflamed area and send it to pathology for a test to officially say she had an infection. From steroids or other autoinflammatory meds to muscle relaxers and GI medications, and even some pain meds they prescribed one thing after another to try to get my mom’s pain and other symptoms under control. But I will never forget how they looked me straight in the eye for a month and spoke to me by phone for a month and told me that my mom had inflammation, but no infection while she was being treated with antibiotics by Infectious Disease. It made me wonder how in the world I could trust anything else they said. I certainly tried and some providers and residents were more attentive than others as they attempted for weeks to find the right plan of care, but that ridiculous claim of inflammation felt so very false so just know that that’s something out there that you might encounter. Someone who works for that small hospital told me they get in trouble if they call it an infection. Someone else told me the protocols have something to do with preventing the overdiagnosis of infections or incorrect diagnoses of infections as it was something going on during Covid. But what I will remember forever is feeling so in the dark while surgeons I’d hoped to trust and their residents kept making statements that felt like gaslighting.
Pro (amateur trying to become pro) Tip: Talk to many different people in the medical field who you know in your personal life (if you are blessed to know them) and ask lots of questions. Ask for their recommendations, ask for their point of view, and ask them which questions you should be asking the doctors, which ones they would ask if it was their loved one. If things get medically complex show your loved one’s scans to those who are trained to read them and continue to gather lists of questions to bring to the treatment team.
Sandwiched Support 