Well it was bound to happen at some point. I am on a trip with my family and forgot it was Monday and forgot to do my blog post that means a lot to me before Monday turned into Tuesday. But I will post anyway.
It reminds me of how the sandwiched, and really all caregivers, struggle to manage all priorities and to keep them in mind.
I tend to try to do it with a paper calendar and without phone reminders, but am finding that it’s something I really need to start accepting. That allowing technology to help is how people are accomplishing so much.
Much has been given to me and of me, much is expected. It is easy to let one or many balls drop at any given time during this season of utmost service and sacrifices.
If you are here with me, I see you. Cheer me on as I consider giving into the electronic calendar and into taking the time to set reminders that are not written on paper that I may misplace.
I have the worst sense of direction. No idea how I drove around back in the day with no cell or an original Nokia cell and Mapquest printouts. I get disoriented quickly when asked to find things on a paper map and even my teens who grew up hearing GPS since they were babies can navigate with a map better than I can.
I appreciate how my husband often drives on long trips, but he struggles to be patient if his GPS is not online and it’s me backing him up on the quest to get where we’re going with few detours. Even if I have to hop on my GPS apps to try to find something specific it doesn’t go well and I like to declare that it’s not working while my husband affectionately tends to say “operator error.”
This is something I can laugh at about myself and my family laughs with me. If I am chatting too much while driving I will often make a wrong turn even if my GPS is right on target. My kids are very familiar with Mom missing the turn and my poor Mom has heard me stress out a number of times while trying to find various medical offices or hospital entrances in a timely manner.
While sandwiched you tend to find yourself driving a number of loved ones many places. I find my way eventually.
More importantly we are slowly but surely finding our way through the sandwich generation’s journey of advocating, supporting, and caring for the surrounding generations.
This morning we packed up from a stellar stay and before we hit the road to our next destination we grabbed McDonald’s breakfast at the request of our second son who turned 13 today. Two teens in the family now- double wow!! No idea where the time went!
I spotted another mom with her family just a table away and made brief eye contact. A little later she approached my oldest son at our table and quickly asked him to take a pic of her family. She then looked over at me and began to talk about how moms never seem to make it into the pics because we are always the one taking them. It’s the second time I have heard that from another mom just this trip and have seen it mentioned numerous times online previously because it’s SO true!!
My son meant well but the other family’s mom was barely in the pic just peeking her head around one of her children. I repeatedly encouraged him to take the picture again and one of her sons, reminding me of mine grinned and said “no no we’re fine.” His mom gave me a knowing look and said, “You know how it is with 5 kids, Mom is barely in the pictures.”(I have 4 but she understandably saw the big family and knew I could relate).
Shout out to ALL of the ladies whose paths have crossed ours and have taken our pics so that I can be in them. And funny how my husband is a willing photographer to get the other families great pics when they take ours, but to get me in pics with the kids when it’s just us, it’s a challenge.
This has been said by many, but I ask you to please take the primary caregiver’s pics, take pics of the primary family or friend group photographer, and be the friendly stranger who asks if someone wants a pic of them with those they love.
My husband’s family jokes about the FHB (family hold back) when someone is holding everyone else up when they are not ready to leave.
Today we went on an average hike to see some Incredible views on vacation. It was absolutely worth every step!! The hike we completed the other day was as well. But honestly I am so completely out of shape right now and while I am thankful for everything my amazing body has done and continues to be able to do, I have plenty of intrusive thoughts about what a bummer it is that I often cannot keep up.
For work I sit often. I’ve carried and given birth to four children. I’ve spent countless days and nights advocating for or providing care for my parents. I have two part-time jobs plus the privileges (and along with them the numerous challenges) of being able to do a lot of things that stay-at-home parents are able to do.
While sandwiched there really is very little time for self-care and that includes prioritizing nutrition and movement. I’m sure there’s more I can be doing and that there are ways to fit it in, but if you are here at this place with me at this time, I see you and I understand.
And shout out to the amazing woman on the mountain trail with us today who heard me apologizing to my family and told me how great I was doing and that this trail is a hard one. Completely teared up in that moment! Feeling seen and understood! Thankful for those who choose to encourage others!
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.
It’s worked out last summer and this summer that my husband and I have taken our four children on a trip for two weeks straight. We have other mini getaways here and there to much closer places maybe once a quarter and honestly most of the time those are just me with the kids for a night exploring a kid-friendly place.
In order to do that as a sandwiched primary support person it 100 percent takes a village. Now I admit I am still in a phase where I am extremely fortunate. Though I am an only child (so there is literally no one to which I can volley the parent ball that I have in the air) my parents were willing to move in with my family of 6 and our golden doodle 4 years ago. They moved about two hours away from the county Mom lived in her entire life and where Dad lived since they were married. We sold two houses and bought one that fits all of us together. So when we go away they just stay at the family home in their routine. And for now, Dad is still making their meals (though it’s pretty simple at the moment because Mom’s on a liquid diet awaiting surgery at the big hospital the day after we get back from this trip and many days he accepts our invitation to just join us in enjoying what I made or what my husband made). Dad is able to let our dog in and out to keep her in her routine, to get her food and water, and to give her her medicine. Mom is able to (and loves to) give the dog plenty of attention and brushes her while she sits obediently every day.
We have a list of phone numbers on the inside of a cabinet door for issues that may come up (plumber, electrician, HVAC, etc, along with some phone numbers for closest neighbors who are wonderful). But as wonderful as they are our neighbors are Understandably busy with their own lives, families, retirement traveling, personal health concerns, and the list goes on. Many have volunteered to help as needed and some definitely have helped with things here and there in the past, but our closer village includes our local close friends. So 7 different couples, my in-laws, and the woman who cleans for us are taking two days each “on call” for if something comes up. I rearranged all of Mom and Dad’s appointments (except one which is over telehealth and would be considered helpful, but not urgent) to make sure there is nothing going on during these two weeks out of their normal routine which includes Dad’s typical errands. Dear friends are taking care of some chores in our absence and the on-call friends agree to either 48 hours straight where they are the ones to call (after us of course!) if something arises (or a few people are taking two single days separated based on availability). Last year Mom and Dad did not have to call anyone except us. We are hopeful that it will remain this way.
We have been truly blessed by the ability to have home health come in on a temporary basis when needed and to utilize short term rehab facilities on a temporary basis for Mom. We have not yet had to privately hire respite caregivers, part-time caregivers, or full-time care-givers. I’ve talked to close friends and family members and the name of one agency keeps coming up as a trusted one, but I cringe every time I think about having to have strangers come into our home to provide help and care. I have already provided some direct care for Mom and I am not opposed to doing so again. But I know that as the only child I will not be able to provide that care around the clock. I imagine the first step will be respite support while my family vacations the next time, unless Mom is in a condition to travel with us which we have done sometimes in the past when renting a house or condo unit or cabin. I cannot imagine what the process of choosing a person or group of people to provide this care will look like and feel like. It’s almost enough to make me want to stay home.
But I enjoy getting away, I have young children and need to live their lives with them too, and my life does not feel complete without my work. I have sought and continue to seek the best possible balance, sustaining a juggling act for the record books. But as my therapist tells me, it’s not sustainable as it is. There will be changes that are out of my comfort zone. We will need more help, very likely before next summer’s longer travel. We will see how it all works out. Maybe next summer it will make sense to bring them along. Maybe it will prove possible to temporarily hire someone we know and trust to provide meal support, reassurance, and help with chores if we do not need direct care for Mom and Dad at that time.
Maybe it will work out better than I could have imagined. We will find a way to manage that we can make work out for the 8 of us and our favorite dog too.
When you’re sandwiched, there simply are no sick days, at list not without getting others (likely multiple others) to accommodate said sick days. This morning the provider at urgent care found red throats for Dad and I and a very red infected ear for me in addition to sinus infections and we headed home with prescriptions for antibiotics.
However, while Dad came home to his awaiting bed (I will say that he grabbed Mom’s protein drink first and got up to make her soup at lunchtime), I came home to more outstanding work paperwork, packing, meal prep, laundry, and errands. My decision to head out right before noon to pick up my prescription and get my 12 year old to the library was questionable because, as I soon realized, everyone was out at that time. The drive thru was packed and someone I just couldn’t handle talking to while sick was in the inside line so did a 180 out of line and headed to the car to move onto the library, sans prescription.
As I was pulling out of the pharmacy parking lot to satisfy my son’s need to read Anthony Horowitz, another medical call came in to get Mom scheduled for the appointment for the gastroenterology provider from the big hospital system who does apparently know about nutrition. I had the wherewithal to tell the caller I was driving and I needed her to pause while I merged and she was very nice and accommodating, but I scheduled that appointment, drove to the library, and came home to just keep swimming.
Thankfully I had a virtual therapy session for myself today at just the right time after losing patience with the kids and simmering with self-loathing over my limits. Post therapy I self-reflective, but also self-compassionate and going to bed very early after taking my antibiotics and leaning on my husband to take care of bed time for our youngest kiddos. Now hopefully it’s a quiet evening in Mom and Dad’s suite or the cell will be ringing.
There truly isn’t sick time while sandwiched. There is no relief for the primary caregivers and advocates, the sandwiched, Unless and Until someone chooses to provide backup. It’s a season without clocking out, sun up to sun down.
Still in the thick of Packing Prison as we have airline tickets and that means that there’s no margin if we don’t leave on time and there’s also no margin for shoving in some extras around everything else in our large SUV. It has to fit in the bags for the plane. And for me, the maximalist, this is my Everest.
Super used to having plenty of room for way too many outfits, all of the bells, whistles, extras, and even the kitchen sink plus little gifts to keep the kiddos entertained in the vehicle. We will head to a local familiar chain store when we reach our destination and figure it out, but there’s just nothing like taking everything you wanted to take and then some. I will admit that I rarely if Ever have used everything I’ve packed in the past and this is a go, go, go adventure trip and all of the kids will have options for some screentime for long drives.
But as I type this and get ready to head to the laundry room to move a load over and put in yet another load after having the kids ALL day (ran to one child’s camp, saw online clients, completed documentation, made simple meals though my husband did warm up an easy dinner, took the kids on a short hike and to the pool with friends, answered a million questions and dried tears ALL before my husband got home from work) I noticed that it is this dark in our bedroom (I stopped in there to fill the toilet paper rack in our bathroom with new rolls after shushing the kids for the 100th time and mentioning consequences to get them back into their rooms) but my husband is lying in bed all tucked in where he has been since around 9:30 PM when he insisted he couldn’t do anything else but go right to bed because he isn’t feeling well, with his headphones in watching an action movie on his phone. I often watch something long after I should be asleep (more on that another time), but I can’t help but feel that I (and many other primary caregiver parents) am getting the short end of the stick while being expected to be the one to stay up late several nights this week to get everything packed and together.
He will pack the car and drive us to the airport and make sure we get everywhere on time. I have it better than many because he is in charge of the tickets and keeping all things related to the hotels, the excursions, the rental mini van, etc etc etc together. And he will drive us everywhere because he likes it and I hate it. But still, I’m packing for 5 and he will throw his own things in on top and will lose zero sleep in preparation for this trip.
He’s driving. I am thankful he’s driving. I guess I’ll be comatose during the travel because it’s unlikely that I’ll be functioning by then and this is nothing new. Someone’s gotta pack and it isn’t going to be him.
A Super Mom of 5 girls who is a friend of mine once texted me that she could not attend something I was hosting because she was in “packing prison” and oh what a prison it is. I am currently there myself, trying to pack for our family vacation while catching up way too much work and other loose ends related to support for my parents for our time traveling. It will be the first time any of our four children are flying on an airplane and my first time flying in 20 years since our honeymoon. We are excited for an adventure and all of the sight-seeing and memory making we plan to do. And a bright spot today was that we found out that Mom does not need to continue the nutrition monitoring bloodwork for which the orders were all screwed up. So no need to keep making phone calls about that. The one phone call my mom made was returned today with the good news. All of the calls I made were apparently for nothing this time as none of them were returned.
Weirdest thing ever though, as I was rushing out of my driveway to take my daughter to art camp this morning I received a call from someone naming a doctor and stating that she was calling from his office and that he is a chiropractor and that I left a message. I was extremely confused and stated that neither myself nor any of my family members have called a chiropractor and she read me back what was supposedly my phone number that she just called me at. I politely informed her that that is not my number (it was not even close). So then there are random wrong number calls. You just can’t make this up.
We are working on figuring out how many suitcases to take and plan to pack all 6 of us in each suitcase and just pull the suitcase we need for the couple of nights we are spending at each location along the way, but we must pack so that the suitcases will fit in the rental vehicle (we practiced with my sister-in-law’s vehicle as it is very similar to what we have reserved) and we have the bag fees per bag from the airlines to consider as well. We will have only a couple of specific spots to do laundry so the packing itself is an adventure.
I will detail my plan for support for my parents, our dog, and our home while we spend this time away in another post, but know that if it is a huge ordeal for you to step away not only from your professional life, but also from your day to day personal responsibilities living the sandwiched life.
And I will end with this. My husband an I frequently remind each other that this is a Trip, not a vacation (a fact that I know many blogs have written about before as it is SO relatable), because the kids will be along, fighting, and complaining and we will just be parenting in another location. But we are definitely thankful that we have the privilege of going and we know we will be grateful for the memories as we look back.
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.
Sandwiched Support 