Mom’s surgery is Monday and my kids go back to school tomorrow (one went back today for a half day intro to the high school- went well) and I am doing my best to celebrate 3 of my kids’ summer birthdays with all I’ve got and it’s not always landing the way I hoped as I am out of energy from doing all the sandwiched primary caregiver and advocate does while also working part-time and being the full-time summer camp counselor, tour guide, cruise director (if the cruise is my SUV or the minivan we rode in on our trip), mediator, wrangler, and personal chef of those I love the most and am also most frustrated with these days.
Burnout is an understatement, but there are the most fulfilling glimpses of what I hear that I will one day miss the most. When my efforts land well and a plan comes together and, dare I say, when someone appreciates it, the heavens open and I find it all worthwhile.
But there are many hours and even days when this is not even close to being the case and it’s challenging to say the least. Today was a day of higher than possible expectations on my part. What I imagined accomplishing was absolutely unrealistic and I ended up in tears apologizing to my kids that on their last day of summer I could not make all that we talked about happen.
The lemonade was that we all agreed to keep enjoying in the days to come, but that turned sour again when I found yet another trip to two stores to go find school supplies that I forgot to grab totally overwhelming after my son’s soccer practice and a day full of not getting to what I wanted to get to. I cried it out repeatedly today and ended up in several rants, most of which I’m not proud of, but at the same time it is also true that I want to genuinely express that motherhood, with or without the sandwiched situation,
Tomorrow the wheels on the bus will go round and round and I will have about 8 hours (with Dad helping with the buses) to get a whole lot done for work, to write clues for first day treasure hunts, and to prepare for two small family gatherings I’m fitting in before Monday’s surgery for Mom.
There will be no calm before the storm of advocating for Mom medically returns.
I make them give me 24 hours notice if there’s a certain shirt or other clothing item they need or want my a certain day. I have been screamed at by all 4 of my children because they didn’t have a clothing item they wanted when they wanted it and I keep telling them, especially the teenagers, that they need to give me plenty of notice or they won’t have it on time. I am a very busy sandwiched working mom, wife, and daughter of aging parents and there is no laundry fairy.
Before you remind me of the value of training my children, the 15 year old has now been doing his own wash for over a year. We start laundry independence at 14 and putting away folded wash at age 6. But they are still working on thinking and planning ahead and it’s definitely a one step forward, two steps back process.
I am too busy living, working, and adventuring with my kids and our family and friends to just be home keeping up with the laundry. I get just enough done in time and my husband wishes I would adopt a minimalist lifestyle where I have just a week’s worth of clothing for everyone and just wash it once a week, rinse, and repeat.
I like variety and bargain shopping way too much and am much more of a maximalist. And I cannot imagine not picking up extras at thrift stores so we have plenty even though a bunch is piled up waiting for its turn for a wash, dry, fluff, fold and brief visit to the drawer or closet.
Tomorrow my 13 year old wants a specific shirt and I caved and put it in the washer and then the dryer so he can grab it out of there in the morning, but there wasn’t any notice that he didn’t have a plan. It’s one load after another around here and that can be quite draining for the default sandwiched primary caregiver of the home and the things that no one else feels like helping with.
Getting ready for another child’s birthday party bumped the blog post from Friday night to Saturday again. Last evening I decided I was too exhausted to blog after emptying out a carload of clearance party items and Walmart food. Decided that Walmart on a Friday night is not my favorite (but I spent all day finishing up the library hikes with my 4 kids and getting my most social teen son to a birthday hang out) and I needed to do my shopping before my prep. It was crowded and a little creepy at times (a story for another day), but I ran into a sweet friend who is also family on my husband’s side by marriage and we made plans to go second-hand shopping when the kids are back in school. And I am really looking forward to it!! Mom and I are very big into thrift stores, yard sales, and consignment shops and sales and I have found friends that share my passion for great deals also.
As a sandwiched adult, however, it’s very difficult to decide how to spend one’s precious VERY LITTLE spare time. For me it doesn’t count if my kids are along or if Mom or Dad is with me. And with regard to my husband it absolutely depends on what kind of mood I’m in or he’s in and what we plan to do. Often it’s quality time when I am with my family, but it’s not that incredibly rare special free time that I almost never get.
If it’s truly free time it’s quite fulfilling for me to head to a coffee shop, restaurant or spa especially with a friend or group of friends who truly get me. But I have to fight the urge to use the quiet to catch up on errands that need to be done (while looking for a few fun things that I’m shopping for at the same time and planning ahead to find things for the next child’s party) or to get work done for work while it’s quiet or to clean up the never-ending dumpster fire mess in my house.
I know in my gut how badly I need space and time just to rest and recharge after having the kids all summer (that’s no joke trying to keep them from truly fighting and desperately trying to keep them from way too much screen time). But I also want to re-connect with my friends who understand me and to have a whole uninterrupted cup of coffee and conversation. This feels like a need also. And our family benefits from improved order around here and needs the errands to be done so if my husband had his way I would spend every spare moment making sure the errands are done and, especially, that the house is in fantastic order.
The struggle is real to find balance in it all and to fill those open hours when there’s not an appointment or an occasion to prepare for and my parents don’t have an immediate need and I am not working and the kids are busy usually at school and the dog does not have an appointment or a need either. And I haven’t even started talking about how meals always need to be made usually by me.
While sandwiched, what’s left after all of that is almost nothing. And I am very fortunate to work part-time or there really would be no spare time.
Took Mom to her AMAZING primary care physician today to an appointment that we scheduled months and months ago. These days you cannot get in with her unless she happens to be on the office when you are super sick and you get one of her sick visits or unless you book way in advance. We typically see a PA these days and many of them are fantastic, but they are not her primary provider who she started with after moving to the area and has known her medical history for the last 3 plus years.
So we are about to have one of our favorite docs enter the room after Mom stood on the scale (amazed by the amount she has lost due to multiple surgeries and being on a liquid diet for months) and got her height measured (confirming she is shrinking)… and the nurse says that this is scheduled as an annual Medicare Wellness visit and she has noticed that Mom has had a lot going on here and does she want to switch it to some other type of visit.
Long pause as neither Mom nor I knew how to respond to this, wondering to ourselves what is the difference between an annual Medicare Wellness visit and whatever other option the visit would be coded as? Then I asked if she is required to have that Medicare Annual Wellness visit and the nurse said no and she also specified that if we chose the Medicare Annual Wellness visit that the doc can only talk about the topics on a list that Medicare says the doctor should discuss. So of course we chose the other option, though we don’t really know what that other option is in the world of billing and coding.
But we ended up with a beautifully thorough, normal session with one of our favorite docs who knows Mom well and we hope the bill isn’t out of the ordinary.
These days as a sandwiched individual who has been advocating for my parents for years now, with quite a bit of advocacy for Mom for almost a year now under the ongoing circumstances, people who haven’t seen me for a while say hello and tend to ask about Mom right away. It’s kind and considerate and I tell them that she’s uncomfortable on her ongoing liquid diet, but stable as she awaits surgery.
What is the actual diagnosis? What kind of surgery is she to have? Who’s the surgeon? What is the recovery supposed to be like?
I get it. I am someone who asks a lot of questions so that I can learn more about things and to demonstrate support for others when the questions do not seem too intrusive. And these questions are not intrusive. I have been very open, with Mom’s permission, about the whole journey so that others may learn from our experiences and be better able to advocate for their loved ones and themselves. And these caring people’s prayers and kind words and support are everything when walking through all that comes along with having medical needs or being there for someone who does.
But it does feel strange to be here. To be of the generation who is asked these questions quickly after a greeting, almost in the same breath. And those who ask are quite often my age or older and/or are individuals who work in the medical field or who have been sandwiched themselves.
It’s a relatable place to be. I am not alone, but there is a loneliness to knowing I am the one who will be responsible for every pre-op form, every post-op update, every aftercare instruction.
And though I have experienced much thus far in this medical realm, advocating as the daughter, this does not mean I am prepared for what is next. I am not prepared, but I will go and do my best again while leaning on my village to seek information, guidance, and support.
Writing my first (and possibly only blog post on a Saturday because I truly completely forgot to post last evening as I was totally consumed by planning an epic tea party for my child’s birthday with friends. I had help from some of the very best people for the job and who step up and show up for me more often than I can count.
Together we made it Amazing! It was a Wonderland tea party and was indeed a wonder. Making beautiful core memories through celebrating life is my favorite. Thankful for all of the people who partied with us. It was the most beautiful day for us all!
I took my dad to a 6:30 am EKG this morning after getting home last evening from our two week trip with the kids. Did one load of laundry and spent my breakfast being the listening ear my dad needed. Called the pedi office to see if I can bring my daughter, who has been sick on and off with cold symptoms for a few weeks and now has quite a cough, to see if I can bring her along to be seen there while I brought my teen son for his wellness check up or before or after. My son’s appointment was at 9:40 AM, not one of the popular timeslots before or after parents’ work days. But they could not get her in.
Thankfully both early morning appointments went well and brought helpful results. But then I had to head back out with my daughter to urgent care for a sick visit. They were helpful but it took me right up to zipping home to get there in the nick of time for my first client and the other three today
My fifteen year old got everyone lunch while I worked, but by the time I was done it was time to pop dozen pizzas in the oven and open fruit and veggie trays and call it dinner as my husband made his way home.
As I skipped preheating and hoped for the best as usual, I called my husband and vented about how I felt I got nothing done today because I didn’t unpack, I barely did laundry, and picking up around here escaped me as it often does. My husband was on point today and reminded me that I took loved ones to 3 doctors and saw 4 clients and that that’s a 7 hour day alone right there not to mention the drives, chores, and being there for all 4 of my children and both of my parents in different ways.
It’s enough, but there’s not enough of me to go around. And I’m sandwiched and each day brings many challenges with opportunities right now.
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.
Sandwiched Support 