Sandwiched Support

Tag: writing

  • July 14, 2025

    In Order to Go Away

    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.

  • July 11, 2025

    No Sick Days

    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.

  • July 7, 2025

    Do We Really Need This Appointment?

    Today I got up early to get my mom to an outpatient office of the big hospital system about 45 minutes out of town to establish care with the big hospital’s GI office. We were referred by the small hospital’s outpatient GI after the PA volleyed us to a physician and the physician had someone call to tell us Mom didn’t need that appointment (funny how that all happened after I questioned a bill following a surgeon nicking my mom, leading to her almost dying, and ending up in the ICU and having a wound vac among other things). I assured them repeatedly at that time that I was not taking any legal action, had not even consulted an attorney, and just wanted them to do something to make it right. Such a long story….but anyway, after a couple of long conversations with staff members about why the small hospital’s outpatient GI office essentially got rid of Mom as a patient (when we were only disputing a bill from the hospital stay following a surgeon’s error and our concerns were regarding some of the actions of the small hospital’s surgical team and not GI), we were referred to the office we went to today.

    And that provider, a nurse practitioner, though warm in demeanor, said almost nothing (absolutely nothing helpful), told us to follow the surgeon’s recommendations after letting me share a lot about Mom’s past surgical experiences at the small hospital and saying very little then also. She did recommend that we schedule with a PA they just hired who is more familiar with nutrition as the questions we were asking today were about options for food variety while Mom treads water on the waves of her ongoing liquid diet.

    As much as that felt like a pointless waste of time, we are hopeful that the next appointment to be scheduled, a meeting with the PA who we hear is nutrition savvy, and one truly never knows when we will need to have GI meds titrated or when there will be unexplained abdominal discomfort along the way. It’s wise to establish care with the offices you may need in the future. It did not feel like that though when we arrived and had to fill out a bunch of forms when we were just at another office (the big hospital’s surgery office) who should really have all of Mom’s info, not to mention that she has been in the big hospital now twice (once for a longer admission) and the other for an extended stay in the ED (out before the second midnight). Why isn’t this stuff in the hospital system’s computers yet? Make it make sense.

    I also spent plenty of time on the phone today because of a debacle with the small hospital system again regarding getting bloodwork every two weeks for the big hospital system. More on that tomorrow. And in addition to that I spent significant time on the phone as well with the small hospital system’s oncology office because Mom’s MRI shows a cyst on her pancreas that they want to keep an eye on. We definitely appreciate that, but all of the write-ups from previous scans, including the recent MRI talk about following up in a year, but suddenly there is full-on communication from this office like it needs to be done immediately, though the diagnosis details and prognosis have not changed a bit. Can we say, too many appointments are open so we need to call everyone who could possibly schedule now? Well, they did say that it’s just all about establishing care.

    Sometimes you end up thankful that you did establish care and you’re not a new patient.

  • July 2, 2025

    A Kinder Offer

    My daughter is almost 7 years old (and is currently having a tantrum over the tissue box I gave her for her room that she does not want while I am attempting to write this in the first spare moments I’ve had today) and she asked me a little while ago why she and her oldest brother had to find me her plastic toy tiny house the other day so that he could take a picture of it for my blog. I told her that I wrote the story of what her oldest brother is (and is not) offering to do for my care as I get older and need care and support (See the June 25, 2025 post for that full story).

    At that time she expressed that she understood (and just now told me she loved me and skipped away with the tissue box she picked out from the closet herself) and proceeded to lavish me with all that she plans to do for me in my golden years. Her mommy is going to live in a large house with her and her family. There will be an art room, a relaxation room, and any room I want. She noted that she will build robots to provide me with spa services on demand and, very importantly, expressed that we will have many choices at every dinner (with a family of our size she hears at least one person saying “that’s disgusting” about the dinner we have before us).

    Sold!

    After receiving the precious gift of three amazing sons, I was prepared to go all-in with the “Boy Mom” merch and give up the dream of Also having a daughter when I entered my gender revealing ultrasound while expecting my fourth. I ended up asking the following question about a thousand times to the ultrasound tech who I believe was fairly new as she announced that I was having a GIRL!! “Are you sure? Are you sure? Are you sure?” What a mountaintop moment! I enjoyed a lot of baby girl shopping that day. Looking forward to moving into that utopia one day. Hope it’s still available when I need it!

  • July 1, 2025

    You’re Worth More Than You Realize

    Of course I’ve struggled with self-worth. Plenty. Something that comes up in every session with my therapist is one of my maladaptive core beliefs that is Not serving me, feeling like I am not Enough. I believe I was chosen to be my children’s mother and that I am just the right mother for them. My faith tells me that I don’t need to be Enough because God goes before me and has redeemed it all. And the women in my life (at least those who I continue to give the most access to me) remind me of my worth all the time. We do that for each other and it’s pretty critical for our sanity.

    But this post is not about anyone’s self-worth. It’s about the role that I play in this family and the role that SO many caregiver-advocates (often women) play. Tonight at another sweet and long overdue extended family gathering, one of Steve’s aunts, who I know well, was chatting with me about a number of topics from family vacation planning/packing tips and tricks to what exactly I am doing for work right now. Well, sadly a campus where I work part time as a contracted counselor is going to be closing and there is a lot up-in-the-air about my options there, and my online job could give me more work, but I am so busy being all I can be for my loved ones who rely on me, I’m just not sure I want to bite off more than I choose to chew. She provided all the active listening and supportive reflection of any great therapy session and when I told her I was not sure if I had the time to commit to a full-time job, at least not one in-person at this time, because of everyone I am responsible for and the many needs going on here. I shared that if I could find a full-time job that I love that is at least partially remote so that I can attend loved one’s appointments with some flexibility, and pays enough so that I can pay someone to come take on some of what I do for everyone around here, then it could work. I then shared that my husband is always telling me that I will not find a job that pays enough to hire someone to do all that I do.

    She responded with every bit of well-meaning intention and said, “Maybe you’re worth more than you realize.” And to be honest, she’s right, my unpaid efforts in serving my family would cost us an incredible amount if we had to pay others to take it on (and it would definitely take others, plural, because there is no way any one person is taking all of this on). And I do realize it and I have seen it studied, researched and written about before, how our society relies heavily on one individual or a couple of individuals to take on care for the elderly and to serve in supportive roles in an infinite number of ways. My parents barely gave any thought to what they would do when they got older and couldn’t do much anymore because my mom sacrificed so much to take care of my grandparents with her sister and my dad’s youngest siblings did a lot (with some help here and there from the older siblings) to serve and care for their dad before he passed away. My dad lost his mother when she was in her early 40s to Cancer while his siblings were young. They just assumed I would take on what was needed and I’m not necessarily saying it is wrong, per se, there is a lot of meaning, value, and purpose in the work, but I will say that it feels less than fair that it’s all not more of a team effort on the part of the family as a whole.

    Steve’s aunt is an amazing, devoted wife and mother of 3 adult children who are all married and she’s an involved grandmother of 7. She was the youngest of 4 siblings who lived the closest, did not work outside of the home at the time, and ended up providing the most care, advocacy, and support to each of her parents as they aged. I know very few details, but my understanding is that she helped support and advocate for her in-laws as well. She has been there and done that, all of it and she is an incredible person. But I can’t help but wonder if there are ways to streamline it all and to not expect the sandwiched to carry every load, but instead to have more systems of support in place, more resources that help available, and fewer family members without a plan for the future that just expect the next generation to figure it out with them when the time comes. Can we do better? Let’s do better, we’re worth it.

  • June 26, 2025

    Drive This

    I drive a big SUV. It’s old, but it can haul all of my kids and more, lots of our stuff, and I am not worried about dragging it through all kinds of conditions or about all kinds of conditions inside.

    Dad and my husband have SUVs as well, just slightly smaller ones.

    Mom has a tiny car and it’s the one she can get into with her bone on bone knees. It’s very painful and almost impossible for her to get into our SUVs so I drive the tiny car to all of her appointments both locally and 45 minutes away at the big hospital. When my husband drove it a couple of weeks ago to pick her up from the hospital he said it drives better than expected. And out on the open highway it does get going.

    But it’s an interesting transition to hop in the tiny car that vibrates while I grip the steering wheel for dear life as it noisily struggles to get up and go. Another first world problem, but, while sandwiched, you may find yourself driving all manner of vehicles you did not choose or expect to be driving to make all the things happen for the ones you are responsible for.

    My husband has driven a moving truck in the past when we needed him to and even backed it into my parents’ mini van long ago. He promised he would never own a mini van (and hasn’t yet), but he will be driving a rented one on our upcoming vacation due to an availability issue with the SUV we wanted as we cannot pick an SUV up in one place and drop it off many miles away where we would like it to. But a mini van, yep, that’s available for that. I was terrified to drive the first big SUV that we bought because my husband was/is anti-minivan and came to love it.

    However, with Mom’s car I have a hate/hate relationship. I am thankful we have something she can get into (silver lining), but that thing locks automatically constantly, it is not a comfortable drive, and it feels like I am the most vulnerable of all while trying to merge (though I will admit it’s a little easier to zip into traffic and into tight parking spaces). There’s no back up sensors and the airbag light is constantly on. And every time I hand the keys to the valet at the big hospital I cringe and refuse to look as they try to adjust the seat to find their way in.

    One day I will only see it in the rearview mirror of my memory and hope I can laugh about it then. And an even greater hope is that the huge SUV keeps humming until we reach the stage of fewer crumbs on the seats and until we have graduated from car seats and sticky floors.

  • June 25, 2025

    “I’m not doing what you did for your parents”

    As my oldest, age 15, of course lives here full-time and has witnessed all manner of unpleasantness hitting the fan over the years with me (his mom) as an only child advocating for her parents’ medical needs, we have had a number of conversations about his plans for taking care of my husband and I as we age and become more vulnerable. Stay tuned for more on this as I interview my other 3 children.

    As of now, my in-laws have said they want to stay in their home for as long as humanly possible (and despite past health scares they are in their 60s and going strong in their new home on their farm) and then they say they want to be put in a nursing home and as far as I know that is what my husband and sister-in-law have planned. She lives in another state and won’t be able to provide much direct support unless they would move near her and my husband is not overflowing with extra empathy. We definitely will see what their needs are and how it all goes.

    But back to my 15 year old. In the past he has told me that he plans to get me a tiny house on his property where he pays a highly skilled caregiver to take care of me and visits often to check to make sure I am taken care of. I have expressed gratitude, but noted that this is likely an expensive choice and encouraged him to start with a schedule of rotating support from himself and his 3 siblings while his dad and I have more minimal needs and, simply, before more is needed. He admits he will likely have it easier than I do as an only child, but expressed that he plans to work hard for a strong salary and to provide that way. We will certainly be grateful if that happens, but it’s, at minimum, interesting to see him already verbalizing some boundaries around what he does and does not want to be part of. Hopeful that he practices some flexible thinking when it comes to this topic if we have more needs than expected and if, heaven forbid, the money to pay for our care ends up just not being there. Staying hopeful that between the 4 of them we will have a better experience than many? Still getting a sense of nausea when I think about the people who go through ongoing medical issues without a solid support system. What must that be like? May we find a way to advocate for them that truly works!

    So this morning Mr. 15 said “Yeah I’m not gonna be doing all that that you do for your parents” as I took the time to give him some tips for how to talk to adults at businesses that may hire him to work for them. I also encouraged him to write down the name and job title of the person he spoke to on the phone who said they would have the hiring manager call him because they often do not follow through. I also encouraged him to write down (or put in his phone) the date and time of his calls to each business and what they said so he knows how many times he has followed up and can communicate that to them as needed or can just know for himself when to move on from devoting his time, effort, and energy to communicating with a given business. I also said to him that when he is acting as one of my super medical advocates one day he should write down who he talked to, when, what time, and for whom they work and in what role. And his reply is, “I’m not doin’ all that.”

    I always hope I am planting seeds and that his 25 year old self is more open to considering these tips, that his 35 year old self puts some of them into practice, and that his 45 year old self is ready to be in my corner, along with his siblings (who I am trying to raise in this way as well) of course.

    Sometimes I wonder how concerned I should be. But thankfully my sandwiched state is currently serving up plenty more to think about instead.

  • June 24, 2025

    Focus on the Kids

    A friend of mine with 9 amazing children is also sandwiched as her mom-in-law’s needs ebb and flow, and she said the other day that at some point we need to shift focus to the kids. That is resonating with me quite a bit right now as I have my four kiddos home for the summer and Mom, taking it day by day on her liquid diet, is currently half way to the 60 days she needs for her Medicare benefits to re-up. She’s framing beautiful baby pics of her only grands and our house cleaner (who is also an organizational extraordinaire) is hanging them for her all over the suite she shares with my dad. There have been bright spots om the last couple of weeks and it almost seems like the calm before the storm, but I haven’t been focusing in on her as much as my dad is heating the incessant soups and popping straws into the protein drinks and carrying the trays to their room. Home health PT continues to come work with her to help her get stronger and mobile lab is coming by to draw the blood needed to monitor when Mom becomes nutritionally sound for surgery. Just chugging along at the moment.

    The kids are home 24/7 for summer break other than the few partial day camps we can afford. We are deeply blessed by getting to use the pool of someone we know and we are doing hikes (walks with clues at area parks and trails) organized by our library system where we look for posts and do rubbings on a sheet that holds 30 of them. The kids whine a bit, but it’s an activity similar to geocaching that is very much for all ages. We adventure together and I am soaking up the sun with them even on the hottest days or refereeing indoors while I try to work. I am apologizing for the distant background noise on client calls and rushing the dog back in the house ASAP because she needs her summer cut and we are on the waiting list.

    Sometimes you need to focus on the kids…sometimes you need to focus on the dog….sometimes you just hope to find a way to settle into a routine with the top bread remaining stable while you’re responsible for the bottom bread all day, every day. Sometimes you find a little bit of rhythm, a tiny bit of routine, and some sweet spontaneous summer adventures while you’re waiting for other needs and demands on your time to increase, to return.

    Today I focused on the kids and a little work. Tomorrow I take both parents to the neurologist for that yearly check in. Sometimes the kids are safe, but they take a backseat. And all the time right now, we’re in the middle.

  • June 18, 2025

    Who Am I Speaking With?

    Today’s advice is to write down the first and last name (or at least the last name) and title of the medical professional you are speaking with by phone, in person, or on speaker through the cell phone of your loved one who gets you on the phone just in time before the provider leaves the hospital room (something we learned to do often over these last nearly 8 months). You never know when you will need to contact that individual again, share their name with someone else, or report something that happened. These days I am grateful the notes I’ve kept are good. but I wish I had documented more, especially the names and titles of the various individuals who have communicated information to us along the way.

    A sort of outpatient RN case manager from the small hospital system, who has been wonderful, called to follow up again today for the last time, but assured me that I can call her back if Mom needs something. She has been great, but I’m still unclear on how we got her managing things, encouraging me by phone, and determining what Mom needs in terms of case management these days. When I asked her upon first speaking with her (or maybe it was our second call) what her title is she said something about that being complicated. She has been relatable and warm and the helpful advocate for the patient (Mom) and caregiver (myself) that I wish we would have had from the beginning, and yet I feel a little strange about how supportive she was because her warmth and support led me to forget to keep asking her title. Maybe I’ll ask if I end up needing to call back. Why do I need to know? I don’t, but I am curious why we get this nurse following up closely and being so accommodating. I wonder what other patients get and what qualifies a patient for the helpful follow-up and from whom?

  • June 17, 2025

    What I Didn’t Think to Ask

    What you don’t think to ask while living the sandwiched life can lead to plenty of extra time calling in to clarify. Plan to budget extra time into your day, although there’s no way to predict how much time or when you’ll need it.

    So I did receive a call back later yesterday afternoon in response to my call asking about whether Mom needs bloodwork this week so I could respond to the mobile lab and make their schedule. I explained the whole situation again and asked my questions again because it was clear that the person who works with the surgical team who called me (I believe she is a PA who has answered my questions in the past). So I explained again that when Mom was discharged 4 weeks ago from the big hospital, the discharge instructions asked us to take her for bloodwork every 2 weeks to help determine when she is nutritionally sound for surgery. I shared that I took her to the lab two weeks later for bloodwork and the same week home health from the small hospital said they could set us up with the mobile lab to come take care of these blood draws at home every 2 weeks. I then explained that Mom spent one midnight in the ED at the big hospital 3 weeks after her previous discharge and during that setback her blood was drawn before 2 weeks could pass again. I then shared that in our efforts to bring her home before two midnights had passed I never asked if she should have the next bloodwork done two weeks after the last outpatient bloodwork because maybe the orders in the ED were not the same and did not cover everything. I never asked if the next bloodwork should be one or two weeks after she entered the ED or one or two weeks after she was discharged from the ED or at another or with a different frequency. I pointed out that Mom’s first appointment with the big hospital’s outpatient surgery office is coming up next week, giving the date, and asked how many times they want us to get the assigned bloodwork prior to that appointment.

    I asked all of that probably because I am Both overthinking the situation AND Also because it’s been a long journey and clarifying communication can truly be the key to smoothing over the next steps in the process. The reason I am telling you all about this is because you cannot make this stuff up; when advocating for your loved one at home after hospital discharge and while awaiting the next appointment, legitimate questions do arise and unfortunately there is rarely a simple process for getting a clear answer.

    So she did not have an answer. She did encourage me a little by stating that the surgeon on duty in the outpatient office next week when Mom has her appointment is the same surgeon who admitted her to the big hospital and who initially diagnosed her there and began discussing future surgery this summer. However, she had no answer about the bloodwork and though she offered to check with the surgeon and let us know, she stated that she did not think it needs to be done now. Well, that’s a partial answer, but not clear direction 3 phone calls later.

    I managed to forget to call the mobile lab back and they called again this morning while I was meeting with an online client. When I called back they agreed to put Mom on their schedule for next week and we are going to touch base if I hear more of an answer.

    Trust me, there’s more to it than accompanying your loved one to all of the appointments that you schedule, reading all of the discharge and care instructions, and making/taking all kinds of phone calls, there are also all of the questions you did not get an answer to, mostly because you didn’t think to ask at the time.

    Clear your schedule (yeah, LOL). There’s plenty to do to clarify what the plan is between appointments and to prepare for the next appointment. And now the kids are home from school or you’re driving them to camps. Controlled (or not) chaos and here’s yet another call to make and another one’s coming through. And those who have time to talk with you don’t know the answers, but maybe they will get them. Hopefully not having the answer doesn’t matter when it comes to making progress toward further treatment goals.