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.
This week’s posts have been about overload and that’s such a significant part of the Sandwich generation, but today I want to highlight a stand out experience with the hospital system this week that I truly hope can help others better advocate for their loved ones.
We got to work with the Medicare 2 midnights rule for the first time this week with Mom. We are learning to find our way with very little guidance through a system that seems to be the furthest from user friendly. Let me be your guide as you prepare to support your loved ones in the future!
Long story short this time it was a large blockage much further down than recently and I just don’t know how that happened because she’s been on a liquid diet. The surgeons said earlier yesterday that they could admit her to an observation area of the ED and get her bowel regimen figured out, but that they are still not going to operate at this time and the plan remains the same (go home on liquid diet and await elective surgery probably in August).
BUT I didn’t realize (and THANK GOODNESS my husband understands this insurance stuff better than I do and was paying attention), that she was STILL in the ED last evening and it had only been ONE MIDNIGHT! I talked to a Utlization Review expert who works for the big hospital and she confirmed (which my husband suspected) that if we picked her up before midnight last night, which we did, it’s before the “two midnights rule” so then she DOESN’T lose her 3 weeks at home!!!!!!!
Let me explain- Mom’s Medicare plan has a certain number of inpatient stay days. These days covered her many inpatient hospitalizations and also were used anytime she was in an intensive rehab instead of going directly home from the hospital with home health or instead of going to a skilled nursing facility for rehab (this is billed out of a different “bucket” of Medicare funds). We knew very little and along the way one of the small hospital’s staff members (I believe a social worker, but I have no idea who it was) told me that inpatient days were unlimited so I fought hard for Mom to stay admitted through an infection and unexplained pain and several stretches of time when she was unable to eat. If I had known we were burning through limited days I would have handled things differently. She certainly should have been in the hospital during those times, but it’s clear that we cannot always get and maintain the care that is needed for as long as it is needed. There are definitely limits. I also was under the impression that the intensive rehabs were paid from the same bucket of as the skilled nursing facilities. I also spent an hour and 20 minutes one day not long ago on the phone directly with Medicare during this journey and was given completely wrong information after a long conversation where I asked very specific questions, sharing my knowledge and Literally having someone who works for Medicare stating the complete wrong thing about my Mom’s plan and which parts of Medicare pay for each level of care. Because she used so many inpatient days or days that count as inpatient (part of this was after a surgeon nicked her and she had to go on a wound vac, prolonging her inpatient stay days) she is now well into what are her 60 lifetime days for inpatient and once those are gone, they are gone. The other days will re-up every time she is able to be home for 60 days straight. Being in a skilled nursing center for rehab, while out of the hospital does not count as being home. So even though she had no readmits for more than 20 day while in her second skilled nursing facility for rehab, none of those out of hospital days counted toward the 60 at-home days she needs to put together for her inpatient days to re-up.
So yesterday I figured this out at like 4:20 PM when my husband re-explained it (we’ve never been able to discharge ahead of the two midnights while still in an ED before) so I started frantically calling the staff at the big hospital, and after talking with like 5 people I got my message across and I spoke to the surgical team and they said if she ate her liquid dinner without any problems they would check on her after dinner. It worked out and my husband and I were able to go get her. She was still on Medicare Part B so we are still on 3 weeks at home and counting as we try to get to 60 days straight at home for Medicare A benefits to re-up. Shout out to my mom’s AMAZING first shift nurse yesterday in the ED who sprung into action when I called and got us Everyone’s attention that we needed to get her out and home in time. Now we wait and hope again and it looks like home health can restart pretty seamlessly!
While Sandwiched it can feel like an endless spinning hamster wheel set to Hot Mess Express.
It’s summer and Mom ended up in the ED again yesterday at the large hospital, first time through the ED there with yet another blockage. 3 days to the day after being discharged from her direct hospital to hospital admit. It’s getting close to 8 months since we began this round of revolving door hospitalizations. Dad ditched his golf game to get Mom there because we are 45 minutes away and we are done letting the ambulance take her to the small hospital if we can avoid it. A tiny win was that Dad spent the night in the ED for the team this time. Mom has had a lot of therapy and has lost a bunch of extra pounds (not the healthy way) and as a result she is stronger in some ways and they just saw her there 3 weeks ago so I was able to :sit” this one out. One tiny win is that I could wake up around 7 AM instead of the usual 6 AM because there’s no school bus to miss right now and my role as the family uber driver wasn’t scheduled to leave the driveway until after 8 AM. So I let my feet hit the floor after Mom’s call came through at 6:45 AM, obediently placing me on speaker on her cell phone which is really the only way I get to speak with any member of the surgical team. This resident told me she’d call me. She didn’t. So I was up!
So of course “but first coffee” and then I got an Urgent email from the organizer of my youngest’s camp deciding to start it a half hour late to avoid the rain, meanwhile it said in the email confirmation to wear sneakers instead of cleats so they could go inside in case of rain. Why complain? But actually I ended up having to spend my own bathroom time “urgently” texting my hairapist whose child also attends the camp asking for a favor. Fellow moms in your village are non-negotiable when you’re on the Hot Mess Express. And casting a wide net to expand and grow that village can keep you from being flung from hamster wheel most days. She immediately agreed to drive my youngest to camp since I could not do 9 AM drop off at two camp locations simultaneously and, as he is able to do most mornings, my husband peaced-out early with a spring in his step following the yellow brick road of his routine to the land of locked-in productivity where only adults interrupt you (sometimes he helps when he works from home, often he is involved when not working, and in his defense he works full-time and is the primary provider…but his privileges are different…he steps off the hamster wheel Often….and one could debate whether he really ever has experienced being on it at all).
My village grows often and the fellow moms (and some others) in it are incredible. Yesterday I forgot the shin guards and today I forgot a key piece of sports equipment and a Super Mama who I texted the camp flyer too, but didn’t know she had signed up, showed right up and handed my child just what was needed no strings attached. Another Super Mama texted me all about it as I pulled into the garage and laid eyes on the one I had forgotten to send along. Spent a few minutes sending the love and gratitude and feeling it.
Short-lived….thought I might get some work notes done. Sent an email. Spent time on the phone with the hospital and answering calls from other medical providers’ offices. Spent time sorting through piles with my saint of a cleaning person because we were alone in the house with no one but the phone to interrupt and she knows I am buried in everything I have to deal with and she’s younger and taller and does not get winded taking a million trips up and down our staircases and doesn’t need a stool to reach my kids’ highest closet racks. We made a dent and she brings the enthusiasm for organization. I apologize profusely for the mess and truthfully assert that I would rather facilitate a room full of people in crisis than sort (and especially than donate) the things. Right now we can only afford for her to clean sections of the house during her few hours each week OR to have her help me organize. Not both. Not more. But we know how incredibly privileged that makes us. To have anyone….a village volunteer or a treasured hired helper…is more than so many of the Sandwiched get. I get it. But I know I don’t really get it, not everyone’s experience I don’t. We worked for all of camp and my husband couldn’t even tell what I had gotten done. But I saw it.
Back to find my youngest beaming and chattering about all the fun she had at camp and all of the great coaches and friends and I got a chance to be the village for 5 minutes hanging out with the child of my hairapist when she was 5 minutes behind and the high schooler camp helpers jetted as quickly as they could. It was a tiny privilege to stand with her daughter as they all stood around for me for 17 minutes the day before while I tried to get from one camp to another. Today my Super Mom-in-Law was previously scheduled to run kids to and from camp while I drove Mom to an outpatient appointment near the big hospital. That fell off the list as Mom was lifted into the hospital bed, but Super Mom-in-Law was still willing to pick up the oldest 3 from camp at the same exact time when I had to be there to pick up my youngest, gave her a packed lunch in the car, and drove her to the loving home of one of my Bestie Super Mamas who kept her all afternoon while I met with clients online and she then took my youngest to a rehearsal that her kiddos also participate in and we all ended the day this week as volunteers at an evening kids’ event (which thankfully includes dinner this week made by more parents from the village). Tomorrow she will drop off her crew and I will entertain, feed em, and mom lyft to rehearsal and then to the kiddo event. How do others who are Sandwiched manage if there is no village?
Couple clients canceled and I was able to make calls, answer emails, and manage to start a series of calls I had to make to secure Mom’s discharge from the large hospital tonight before two midnights had passed (future blog post about the two midnights and playing the Medicare game). The surgeons want her stronger before elective surgery and are not going to operate even though she is very uncomfortable because it’s not emergent again yet. She received the treatment she was going to get to stabilize her and was still being observed in a section of the ED so we could bring her home to continue on her liquid diet and await elective surgery before digging into more of her limited lifetime Medicare days. She is about out of inpatient Medicare days because she hasn’t been home for 60 straight days in almost 8 months. Some days were spent at the skilled nursing level of care (comes out of a different Medicare payment bucket) but most were in the inpatient hospital or at intensive rehab facilities (which count as being in an inpatient hospital). Because we left the kiddo event a little early and my in-laws brought the kids home in our vehicle so there were enough seats for our crew, and picked her up before the second midnight from the ED at the large hospital, she did not lose her 3 weeks she has put together at home. We do not have to start over again counting from the beginning. And we are jogging along toward that 60 day at home mark when many of her Medicare days re-up. What a system.
Settled Mom with Dad after a fairly smooth lap around another discharge, set off the load of wash I began loading into the washer yesterday and pulled up a chair to blog it out. Now maybe I’ll cut into the little sleep I rarely get enough of to watch a favorite show and feel like I am just me for a little while. Maybe someone who needs me will wake me up. Maybe I should fall right to sleep in case that happens. Maybe I don’t care because I want to watch my show a little bit because when running on the hamster wheel set to hot mess express while Sandwiched is a real trip and I can’t seem to Stop the Ride even though I want to get off.
The sandwich generation’s primary caregivers live in a series of these. We often find ourselves in a no-win situation.
Some recent ones for me include spending a bunch of time lining up summer camps that all 4 of my kids can go to for parts of the day so that we are not spending too much on full-day camps that we cannot afford because I only work part-time because I can’t work full-time and pay someone enough to do all the things I try and fail to do in a day. So I spend time I don’t have finding and registering for camps that might interest my kids of varying ages. For 3 days of this week we found one semi-affordable half day camp that would teach my oldest, second, and third child simultaneously while my youngest attends a separate camp with friends. I used time I didn’t have while paperwork for work is overdue so that I could gain some quiet time to catch up on my paperwork.
After two drop-offs, one with the leader showing up late, I hurried home to lock in with my paperwork. Dad moved his golf day from tomorrow to today because it will rain tomorrow. I want him less stressed and as healthy as he can be, but that meant I had to let the home health OT in. Home health is to free me up to do my work, but she parked me out of my driveway, offered to move while she hung on the phone and eventually came inside. No locking in for me. After I overheard her talking to my mom about discharge I got up and had one of many conversations for clarification and education. Then I got Mom her water and checked if she needed anything else while explaining that my job needs my notes done and I need to do them while the house is quiet. Got one note done before Mom started texting and calling me with her needs. In less than 3 hours’ paid time I had to rush out stressed as can be to two camp pick ups because I got practically nothing done again except for all of what feels like thankless labor for which I am the default family member. Mom’s calling me while I am trying to drive, my kids are screaming and fighting with one another when they’ve only been in the car 3 minutes. I completely lose my patience with them, I get home and work all afternoon with online clients while my kids fend for themselves under the supervision of my teen and preteen because there’s no more money for camp. And there would not have been any money for camp or the vacation we are going to take if I did not see those clients.
And I want to meet with the clients. After my family, the work I do with my clients is the greatest honor of my life. But if I didn’t work I would be able to give more attention to the generations around me and might do so with less rush, less stress. But I’ve been there, when I do that a light in me dims and threatens to go out. I miss work when I don’t work. And when I have too much work and cannot be there for family in the major things from advocating medically to being there for the school events and making sure they get to participate in the activities they want to be part of, it doesn’t feel right either. And if there’s no work there’s no money for the extras that we enjoy together. But it feels like I am always presented with no really good choices. If I spend the time on the holidays and the parties and the activities, the laundry and the clutter threaten to choke the life out of my home and this is close to the current reality. If I delegate, which I am blessed to do with the housecleaning, there are many questions about how many hours I need to fit in at work to cover it.
If I am the one who sits in the ED with Mom to advocate and the doctors do nothing major all night and then I am exhausted all day, no one is taking over with the kids and the laundry and the paperwork for work. If Dad goes and sits there we might risk he and Mom forgetting to verbalize an important detail. If I get home health I have to let them in and wonder when they are coming, with outpatient appointments for Mom I can schedule them but have to clear my morning or afternoon to be the one to take her. If I work or care for the family the chores do not get done.
Still not sure how all of these categories became the primary responsibility of one. Others are sometimes willing to help, including my husband and Dad, but if not, it’s all me.
So apparently part of sandwich generation life is taking pictures of your growing kids, holding signs, ending another school year, and experiencing All the Feels while you enter summer with them- tears in your eyes as your heart swells with pride, experiencing a different kind of exhaustion as you try to fit in work so that you can play when they play and accompany them on as many adventures as possible before the school bus arrives again and you wonder where the summer went again.
And at the same time it is also true that while your friends’ kids, or maybe your own kids are graduating (or at least working toward some important goals as they graduate to the next school year), you’re attending more funerals, with tears in your eyes, of adults that were important in your life when you were meeting milestones or adult loved ones of your close friends. My parents in their mid 70s and dealing with health issues, but we are truly grateful for the time we get with them, a bonus of them living with us. But I am attending more funerals these days and it didn’t occur to me that that was coming. I attended my aunt’s funeral. She was my godmother and I remember feeling like I hit the lottery when I was invited to swim in her pool as a child. When she lived with my parents through part of her battle with cancer, it was very special to watch her connect with my kids during our visits. One of my best childhood friends texted another friend and I very recently to let us know she was in the midst of decision-making with her mom about whether or not she was going to go on hospice and her mom decided to proceed with it (but she also learned that if her mom improves significantly within a certain period of time she can come off of hospice. We’re learning every day). One of my very first best friends had to make the impossible decision to take her mom off of life support and we reconnected as my family learned she had passed, but I could not travel to the funeral as a surgery I underwent was too recent.
Today Dad drove me to attend my uncle’s funeral. He was my uncle during my childhood and he was a great one. Divorce led to me not seeing him as often, but it was very meaningful to me to hug my cousins (his children) and his grandchildren and pay my respects at a celebration of his life where they truly honored him. Seeing the photo slideshow brought back a rush of memories of the home he shared with my aunt that was just a street away from the house where I grew up. Every piece of furniture and home decor in the background awakened the best thoughts of family gatherings and holidays. One of the places where I learned about the warmth of family was when visiting that home. Hearing his children and grandchildren and friends, including my dad, speak about his character and the positive way he lived his life was special, but surreal. It is unbelievable to me how quickly life feels like it goes and I experienced decades knowing him. But it goes so fast. And you never know. And even when you know it’s coming, as was true this time (he battled Cancer and was on hospice), it’s not easier, iykyk, and you still can’t predict when you will be in the funeral home, the church, the chosen place of sharing memories.
The sandwich generation hits different. The experiences are so diverse and can truly feel like ping-ponging back and forth from grief to hope, loss to abundance, spent energy to the fullest heart, and SO much can be true all at once. Adulting next level. A Gen tug of war. It’s all happening now and we’re responsible for all of it happening smoothly.
Today I got up at 6 AM as usual on the kids’ school day. I got Mom out the door to get bloodwork around 7:30 AM so that I could go do end of school year errands and be back for Mom’s home health physical therapist to arrive and to meet with online clients 1-4 PM. I pulled the car up to the curb at the lab, the one that I basically only drive for Mom because it’s the only one she can get into. I went into get one of the wheelchairs, making sure that it has the footrests that work for Mom, but no calf rests because they hurt her legs as she lives with lymphedema. She and I together got her in the wheelchair and into the lab, only to be told that the larger hospital’s provider wrote the lab orders, but not the diagnosis on the (yep, even in 2025) old fashioned prescription pad slip I had to carry to the lab that is local to us because it is not a part of the same hospital system as the larger hospital who is now overseeing Mom’s care. We got back in the car and I had more calls to make without the correct phone numbers with me to ask the large hospital provider to please communicate the diagnosis to the lab as soon as possible. Like the resourceful advocate that I am, I went back through my phone to find the number I received a call from when the larger hospital system called and changed Mom’s upcoming appointment. One thing after another. But if I don’t do it, it won’t get done. I know many of you feel that.
Meanwhile I am getting plenty of texts and calls and emails all day about life, including an email from one of my bosses that wasn’t entirely unexpected, but absolutely added to the stress of the day. I started driving around with Mom to my errands to keep her out and about while we awaited an answer about getting the lab work. She made the best of getting to see the “sights” around town and spending the day with me and I remained stressed looking around in 10 different stores for some things I was trying to put together. Mom helped me have a few laughs, but I knew that after work I had more errands, followed by morning clients, followed by the privilege of being able to attend two of my children’s end of year parties as a volunteer, followed by more clients, and an evening of getting ready to head out of town for a funeral on Thursday.
I put every puzzle piece of the to-do list today together doing so hungry and dehydrated (ate lunch late and caffeinated). The new physical therapist session went smoothly, client sessions done, fed the kids, and as my husband stopped by home for 10 seconds after work to pick up our son for soccer practice he said, “See you at zero dark thirty” which he often says to note that we are ships passing in the night, often heading in different directions to do all the things for our kids, my parents, and our volunteer commitments. I headed out and picked up my youngest children’s printed birthday invitations to hand out to their school friends tomorrow. I dared to look at just one sheet of each set of invites and, finding them acceptable, paid for them and went on my way making two more stops going over all the things in my mind. Things needed for this week, next week, and in the months to come. My mental load today involved talking with 6 medical people related to Mom’s medical care either by phone or in person, going through the mental checklist of everything I need and want for the things coming up that we are doing with and for the kids, with and for our church and groups we are involved with, with and for the school, and for summer in general. I asked myself, what might be sold out if I don’t grab it now and what doesn’t really matter and can wait until later? In and out of the car and out to the other end of town again because I forgot something this morning even though I was just there earlier.
Sound familiar? If you are the primary parent and default person for everything-except-primary-financial provider, it probably does. Many of you might even be the primary provider PLUS the one keeping Everything running….hats off to you as you choose to make it all work! After arriving home later than I wanted and preparing for a late night getting things ready that are important for me to do, I opened the paper bag holding the printed invitations, noticed that there was only one sheet of my sons’ and the rest were my daughters’ and I lost it. Was it really about the invitations only? Of course not. But a little bit it was. A little bit I was pretty furious that I made two trips to that side of town and only made it back with the invitations once. I was irritated at myself for not checking things beyond the first two pages in the bag. I was feeling the weight of all of the things that I TRULY do want to do this week and the fact that, as is often the case, the things I could cross off the list without major consequences are actually the only things I want to participate in.
Do I want to arrange all of the appointments? Nope, but no one else really can. Do I want to make meals for my family and know that the piles all over the house (of an infinite number of categories) are almost all my responsibility? I really don’t. Do I want to do never ending laundry? I do not. But these are the things that are really needed for my family members’ well-being. I want to come to the class parties (and I know what a privilege it is that I have the flexibility to do that). I want to host big overblown children’s themed birthday parties that involve everyone we know (when I see a party come together and people enjoying it, it lights up my life). And I want to do the shopping because I am queen of getting fantastic deals and making sure we have that extra quality of life, even if most of it is made possible by clearances, buying in bulk, or discount stores.
I am thankful to be able to put the puzzle together each day, but sandwiched life really piles on sometimes, and self-care without dropping the balls in the air isn’t always possible. There are many valid things to be said about balance and boundaries and self-care, but sometimes the best laid plans don’t go your way and it’s absolutely a thing that the expectations for the designated family caregiver can be pretty heavy. The family caregiver makes it all work out and some of that is rewarding and meaningful. I have a little sign over my pantry now (in our old house it was right above the sink where I washed the dishes) which reads, “Thank God for dirty dishes; they have a tale to tell. While others may go hungry, we’re eating very well. With home, health, and happiness, I shouldn’t want to fuss; by the stack of evidence, God’s been good to us.” And this is true. I am thankful for what my messy house means, that we have thriving healthy growing kids and a sweet spoiled dog, and there’s a beautiful space where my parents share the home and I can provide help followed by an easy commute by foot right upstairs to my bed. I have a phenomenal amount to be grateful for and I am. I am aware that my problems are absolutely first world problems.
But also, more than one thing can be true at the same time, and today it is also true that I feel sandwiched from both sides. It’s not that I want the true alternatives to this, but I wish I truly could pause life like I pause my kids’ shows, to build in more margin. And if you are feeling big, real feelings about being the one who does SO much to keep everyone in your corner’s world going, I want you to know that you are absolutely Not alone. And if you say things you shouldn’t say in front of the kids sometimes when the last straw hits the fan (or if you retreat and hide away while they wait outside the door), I see you. I wanted to be seen by my family tonight, but none of them get it because they don’t live it and they were, understandably disturbed by my meltdown over a printing mishap. My husband solved the problem with an almost-as -good printing effort at home which saved the day and kept me from another trip across town, but not before he told my dad I was overreacting over nothing and dismissed the point of everything I try to do by telling me if I can’t handle it I should just stop doing so much. Not helpful in general and I know many of you have been in similar situations and know how that feels.
I don’t ever want you to think our crew is executing every task with perfection because our humanity is definitely showing. We are taking it day by day with all of you. But can we all agree that with AI booming in 2025 that we have got to be able to find the technology so that I don’t have to carry a prescription slip to the lab- LOL.
As we head into June, school comes to a close for the school year, and I begin week 3 of the blog, I am reminded of the bottom bread in my sandwiched life, our Amazing kids. This week I plan to put out there some of our hopefully relatable experiences as we navigate life with live-in aging parents and our children all under one roof.
There is some cautious optimism about the summer in terms of the kids having more free time due to public school being closed for the summer. I will spend more time with them during the summer months and this year we need that more than ever before after nearly a full school year with my Mom’s ongoing hospitalizations and their mom off advocating. Shifting into the new summer schedule and balancing life’s duties with more hours with the kids at home can be challenging to say the least. But Mom is stable right now on her ongoing liquid diet and I am finding a little margin here and there to dig myself out of some of all of the crisis time backlog.
My hair stylist has a little sign in her salon that says “Hairapist” and it’s perfect for her because not only is she skilled at making so many look their best, she also is a great listener and conversationalist. On Friday I spent hours there having the best morning (a little bit of occasional self-care that is important for us all, especially those advocating and caring for others) and bent her ear about the following interaction with my husband that led to quite the disagreement between us on Wednesday night. As a fellow primary parent she immediately understood my point of view and actually finished my sentence.
Another beautiful friend (also a primary parent of several kiddos) recently mentioned to me that she and her husband at the time weren’t “on the same page” and that is now my favorite way to share with others that my husband and I are in conflict at the moment. On Wednesday night we certainly were.
As the primary parent at home, only adult child of two live-in aging parents with various health concerns, and a golden doodle in a busy household, my chores are simply never ever ever close to being done. I choose to participate in part time work for multiple employers to retain some semblance of my career and to contribute financially to all we are keeping afloat. We volunteer our time in our neighborhood and within the community and are uber drivers for our kids’ activities constantly. My piles have piles and my to-do lists and notes litter the dining room table while my home office has quite a few tasks awaiting my divided attention as well.
The scariest pile is an area in my garage piled up with everything from the kids’ upcoming summer birthday parties to Christmas decorations (from our celebration in March this year when Mom was out of the hospital briefly) and Easter items that never made it back to the attic…. Yet is one of my favorite words to instill hope in my clients, but my husband is understandably quite fed up that that huge pile hasn’t received my attention…yet.
So we didn’t have any kids’ activities this past Wednesday evening and no plans so I shared with my husband (days in advance) my plan to spend a couple of hours making a significant dent in that pile by taking trips through the dining room and up two staircases to the attic storage area. I made an announcement to the kids at dinner sharing with them that there are some birthday surprises hidden in that area that I need to clean up and so they were to be in the basement, outside, or upstairs in their rooms, but not on the main floor while I was walking through with the items. I also reminded my husband how much he wants that area cleaned up and asked him to be the primary parent for 2 hours (which at our kids’ age involves being a bouncer in voice only- reminding them to stay out of temporarily “restricted” areas and breaking up battles between them). I sought personal space and uninterrupted focus and no one was more full of false hope that evening.
No sooner had a walked in the house with the first load but I found my youngest on her wobble board living her best life in the dining room while my husband clearly had no idea where she was and admitted such when I questioned him in irritation. I am the one who tends to be the most emotionally expressive and he tends to disengage, shut down, and retreat in the face of conflict. Later we used the tools that we know and have applied sometimes inconsistently during our 20 years of marriage and I shared how frustrated I felt when he chose to prioritize cleaning up unnecessary parts of the dinner mess in the kitchen (gotta put the food away because of the dog) that could have received attention later, over corralling the kids as I requested ahead of time.
He responded by letting me know that it is an unreasonable request for one parent to be expected to know where the children are while also cleaning up from supper. And my hair stylist chimed in right on cue that mothers everywhere are doing that every day. Nailed it.
If you have children or grandchildren, please do something special and encouraging for their primary parent and get to know more about the weight of the world on these individuals so often. And start ongoing conversations in your home about not only what your priorities are, but also how you’re going to attempt to handle everything when things that cannot be controlled (such as health issues of an aging parent or a challenging season in a child’s behavior) come up for you. Some have a partner or other support person to help share that primary load, others are running a one-person show whether they truly chose that or not.
My hair stylist’s understanding of my POV definitely made me smile and I may have laughed out loud a bit because I may have responded to my husband’s statement by saying that I could line up 20 mothers who would tell him that doing that very thing is a huge part of their day to day. What’s reasonable though does of course vary based on the individual, the situation, and the circumstances. While that may have been a bit of a cop-out on my husband’s part, which we have since chosen to put behind us, there are hundreds, maybe thousands of examples of responsibilities in life’s mental load and task load that are very real for the juggling in the sandwich generation.
How can we find better ways of sharing them I wonder?
I need to do a deep dive back through Mom’s hospital notes (In my spare time) to see how her patient refusals that I’ve heard so much about are documented. From the few I’ve taken a peek at, I am disappointed by how little detail is recorded about Mom’s stated reason for her refusal in many cases.
One stand out area of “self-limiting behavior,” as one Physical Therapist coined it at an intensive rehab Mom went to for therapy during our current 7 month journey, was declining PT during periods of abdominal discomfort or episodes of more intense abdominal pain. Mom also has terrible arthritis and now has bone on bone knees so walking around for her is excruciatingly painful. Medical professionals often agree that she is physically able to take more steps than she typically does, but as it is difficult to experience someone else’s pain directly, it’s just an area of significant difficulty that impacts her treatment. She is being treated for ongoing Adhesive Disease following a hernia repair and bowel blockage surgery. Along the way she has had a significant post-surgical infection during which she experienced so much pain that she could not tolerate food or liquids and they ended up putting her on TPN (total IV nutrition). We learned later that there was so much junk in the TPN that it caused her to gain weight at a time when her extra weight was a limiting factor as well.
Hospital Tip: No matter how uncomfortable your loved one feels, if they need PT and OT while inpatient I strongly advise them to participate when the PT and/or OT is in their room. Now PT and OT will not allow the patient to continue beyond what they truly can handle (for example if they become dizzy, they will have the patient sit down or if the patient’s BP is too high or too low for activity they are not going to push those limits). But you should know that not only are there far too few PTs and OTs (and I’m quite sure this is true for Speech Therapists and other specialties as well, but we do not yet have experience with a need for Speech support) working in regular inpatient hospitals to meet the need, but Also your loved one’s “refusals” are being counted and held against them.
What do I mean by that? Anytime your loved one is in need of some kind of aftercare for which the patient and family are not paying out of pocket (and probably even in cases of private pay the notes are being examined to determine appropriate level of care) the admissions staff at the skilled nursing centers, intensive rehabs, or home health agencies are thoroughly reading through your loved one’s chart. They are not just looking for diagnoses and needs that they may or may not be able to meet, but they are also noting what kind of patient your loved one has been. If they are repeatedly asking PT and OT to come back later when they feel better (pro tip: they don’t have time to come back as there is already not enough of them to go around so if they ever do do that for you, Wow, they are trying to go above and beyond for you with limited resources) they are not considered the ideal patient and are unlikely to be accepted at an intensive rehab (more on the differences between aftercare facilities in a future post). They are also reading all about how the patient cooperates or does not cooperate with taking medications and with complying with nurse recommendations and provider orders. Your loved one’s moods and rough days while going through health issues that have them in the hospital are part of the clinical picture of them that may or may not set them up for success when you are hoping to get them a bed at the nicer facilities with better care.
Early on when I was first learning about aftercare and how the facilities get a 1-5 star rating in PA from Medicare (It’s still not clear to me what all factors into that, but I think I just need more time for research), I called the only 5 star skilled nursing facility close enough to home that we hoped to have Mom go there for rehab. She had been rejected from this facility and at the time I did not know (and I think I really didn’t want to know) if that was because of her physical condition at the time or because Mom’s notes may reflect that she hadn’t been too keen on doing PT with abdominal pain (typically from ongoing partial bowel blockages) and her bone on bone knees. The facility had communicated back and forth with our hospital social worker and the social worker made me aware of the rejection. However, I thought that if this facility knew how dedicated we are as a family to bringing Mom home just as soon as she was just a little stronger and could get to know me by phone and see what a support system she has in her family and hear about all of the accommodations we have for her at home, they would surely reconsider admitting her. I was very wrong. Before I got much of a word in edgewise the admissions director snapped at me that Mom was reviewed by their whole team and she is rejected because she is at risk for readmission. No chance to explain who we are and what she has to come home to after a little support. I wonder if the hospital staff is considerate in the word picture they paint of the patient.
You may find your loved one rejected from multiple facilities and if other desirable ones who would normally accept your loved one do not have a bed or cannot accommodate something (such as a wound vac) that your loved one is currently managing with temporarily, you may find yourself choosing between home before your loved one is ready and a couple of 1 or 2 star facilities while the hospital is announcing that your loved one is medically stable for discharge and you’d better make that impossible decision right away. And if you don’t, your option is to appeal to Medicare or start paying the full hospital bills after noon the next day.
Key Takeaway for you: Talk about this with those you love. Demonstrating treatment compliance and noted refusals has proven very significant in opening and closing doors for Mom along the way. Think about how you will handle similar situations if you and your loved ones are faced with them.
Sandwiched Support 