Sandwiched Support

Category: Uncategorized

  • September 14, 2025

    It’s the Weekend, But it’s Not

    If I had remembered to write this yesterday, this is what I would have posted. I spent 8 hours at my son’s baseball double header yesterday including the hour drive each way and I easily could have posted but wasn’t thinking about it. Wonder how long it will take me to give into more reminder alarms and alerts on my phone.

    Friday night I would have loved a date night with my husband either at home or out, but our middle sons and Dad wanted to go to the high school football game so my husband took them and I ran my oldest to work. I wanted to go park at a free community movie with my oldest two sons because the movie is their jam, but one was working and the other was with friends at the game. I could have asked a friend to join me at the movie but it wasn’t appropriate for my youngest and she was home for the evening feeling slightly under the weather. So I cleared off the attic stairs, which I had been using as a spare closet/plunking spot for whatever I needed out of my way, because the HVAC guy was coming today to do maintenance on Monday. This took me until 10 PM. I wanted to watch a movie or a show on my phone before I fell asleep after getting my daughter to bed, but I couldn’t keep my eyes open.

    Saturday was almost perfect with a pleasant visit to Mom in the rehab center with my youngest followed by my cousin’s beautiful bridal shower not too far away. That was a bright light, but I spent the long drive home wishing I drank more coffee after my daughter had climbed all over me all afternoon and I felt my energy fade after all the excitement (certain things can make me feel my age and that’s one of them) and I got a call from my husband that the dog is not well.

    He noticed she has been lying around much more than usual and having trouble walking on different feet. He called the animal hospital Saturday that is literally right by our house and they were not open. I arrived home from the bridal shower and my husband had to leave right away to take our oldest to work while I held down the fort getting supper made and being there while our two middle boys had friends over. Then Steve came home and took our to an urgent vet a half hour away and they told him that because they were short-staffed by one vet that it would be 6-8 hours for our dog to be seen with the symptoms he reported. So he left because it was the evening by then and he hadn’t eaten dinner yet and that would have been a lot to sit there at that time for 6-8 hours.

    Sunday morning he drove her back to the same place in which showed a 4 hour wait time before 8 AM. He got down there with her and their online wait time was apparently inaccurate and they were again telling him it would be a 6-8 hour wait so he left and went to another urgent care vet he found online. Around 1 PM Sunday afternoon he was heading home with her and he reported she had bloodwork and it came back negative for Lyme’s Disease but they still think that’s what it is or a similar tick-borne illness. They said her joints are hot. So she received IV fluids and antibiotics and went home with antibiotics and some subcutaneous fluid that they put in there that her body is supposed to gradually absorb (her body has a temporary hump of fluid). Hoping that she gets better in 2-3 days because this was several hundred dollars just from this visit alone, she recently has had a seizure problem that we are now treating with twice daily meds so there have been a bunch of expenses there, and she’s only 4 years old. All 4 of our kids in the car on the way to church were worrying she’s going to die and talking about desperately wanting another dog if something happens to her. And as sandwiched adults we are just done with pets. We just have so many family members for whom we are responsible and it’s a busy season and I would be very hesitant to get another dog or pet in general because of the significant cost and the time and energy that we are already short on. And my husband is on a whole other level of “no way is another pet happening in this lifetime.” So, we’ve had plenty going on, and we love our dog, and we keep her alive and well until our youngest is in at least Middle School which is 5 more years. Hoping it’s reasonable to wish for at least that.

    After taco night at home Sunday we called it and again couldn’t keep our eyes open.

    It was the weekend, but it wasn’t.

  • September 11, 2025

    3 Day Rule

    I saw an article by CBS News on my phone today talking about how a patient on Medicare has to have been in the hospital (not counting the ED) for 3 days which is 3 midnights in order for the patient to be eligible to enter rehab following the hospital stay. Something new to me again. Mom always has been hospitalized for more than 3 days when we have sought out rehab for her so I did not give thought to how long she had to be hospitalized qualify to go. I just thought it was based on medical need to be in rehab for PR and OT.

    Always something more. I wonder if I will ever find the time to read through every document full of fine print.

  • September 10, 2025

    Always Something More to Explore

    Today I found the time between clients to answer the call from Mom’s caseworker at the rehab without having to return the call. She shared Mom’s EDD and stated that Mom has a certain number of authorized days in their facility this time around. It seemed like she might be new because when I questioned her about this, stating that Mom has been in the Acute Rehab Level of Care multiple times in two different facilities and no one ever talked about a time limit that Medicare had authorized. Thankfully this time it seems, in the improved condition she appears to be in, that it will be enough time for her to be ready to come home.

    But I asked to speak with someone who could explain the authorization and billing information a bit better and the caseworker said she would have to find someone to ask to call me. She also did not know how to transfer me to the nurse’s station and I waited while she asked someone. Totally understandable if she is new, but she did not explain to me that she is new and I truly would prefer to know what she does not yet know so that I can seek out someone there who does know the information I am looking for.

    And once transferred to the nurse’s station I asked about the xray that Mom had today and Mom had already texted me that they had just completed the xray. The nurse told me the xray technicians were still on the floor so it might be later this evening until I receive a call back with the results. I was as kind as possible, made sure she had my number and clearly requested a call back. It’s a good thing that as I drove home at 4:30 PM I called Mom on her cell phone and she was able to tell me what they found on the xray (which this time thankfully sounded like it was nothing of significance), but what if my loved one couldn’t keep me updated by cell phone.

    The nurses never called me back. Nor did anyone from the medical team. And no one was going to tell me about the xray she had just had because I brought it up to the caseworker and she admitted that she knew about it. When was anyone going to calk and tell me?

    The grass is not necessarily greener at the big hospital’s rehab and this new insurance benefits info regarding a limited authorization is definitely something new for this sandwiched advocate to find out more about. Always best to know more before, heaven forbid, next time.

  • September 9, 2025

    We Can’t Accommodate

    I am realizing more and more that while the Physical and Occupational therapists at the acute rehab centers in our general area are fantastic, well-trained, extremely hardworking, and motivators, they really don’t have all of the tools to accommodate everyone’s needs. Mom is medically complex but not nearly as medically complex as others. The more I get to know what the rehabs do not have, the more grateful I am for the setup we do have here at home for Mom.

    She is now in the second Acute rehab that does not have a grab bar by the toilet on the side of her good arm. She is very hesitant to try to manage, even with help, in the private bathroom connected to her room at rehab, because she has a torn rotator cuff on the arm that would be used to grab the grab bar by the toilet to help her stand up and she cannot support herself with just that arm. She stated that everything is backwards from what she needs and has at home.

    Every rehab asks about stairs in the home and Mom and Dad’s living space is on the main floor of the house so there are only two stairs down into the garage for her to get in and out of the house. We have measured the stairs and reported the measurements to every rehab and they insist that they cannot send Mom home until she demonstrates in PT at the rehab that she can climb up and down the two stairs. Here’s the catch though. They don’t have any stair setups in their gyms that are like the two stairs heading down into our garage. The rise is not the same. The run is not the same. It wouldn’t matter too much if Mom didn’t have bone on bone arthritic knees awaiting replacements, but when the stairs are bigger than what she has to do at home and they have angled railings on each side which is not what she uses. To get down the two steps she uses her walker or takes someone’s arm to help. To get up the two steps we have a curved grab bar mounted to the wall, one grab bar on either side of the wall so she can pull herself up one step at a time. They don’t have a set up at rehab that mimics that.

    She has a grab ring in the middle of the bed (my parents have two twin mattresses that each are remote operated to recline or be raised similar to a hospital mattress). She has two very short stairs with railings that help her get up into bed with motion activated lights that turn on what she gets up at night to lead her to the bathrooms. Her rehab beds do not have steps up to them or railings. The bench and grab bars in the shower we have for her at home are different than what they have in the showers at the rehab. She is not really practicing to go home with the accommodations we have at home.

    It would be great if they had more options to accommodate individuals and to simulate what they actually have at home.

  • September 8, 2025

    Ted Stockings and the Living Will

    Some days for the sandwiches include picking the only kiddo who doesn’t have an activity tonight and driving an hour to make sure Mon settled in ok back in PT/OT rehab and bringing her her red stockings with the very specific holes and the Living Will and POA documentation that the doctor asked for.

    This time my 13-year-old son and I ran up to the big hospital’s rehab for the evening to cheer Mom up. Tolerating primarily soft foods for a few days now! Hopeful that we might be out of the woods before we make it to the one year anniversary of the initial emergent surgery. My son made his Gramm laugh a few times and shared stories from home. We caught some “Wheel of Fortune” together and he didn’t want to leave at the end of the visit because he was visiting with Gramm’s phone. He enjoys playing her Sudoku. Gramm had to finish the last round for him because visiting hours were about over. Treated him to a late bite at a delicious local brewery and sadly he spent the time complaining that he would rather be at Arby’s. I shared with him how misguided he is, but it didn’t seem to make an impression. I said if I am driving an hour each way we are going to eat somewhere we can’t eat near home. He did not see things my way, but I was still the one with the keys. 😎

  • September 7, 2025

    The One I Meant to Post Yesterday

    As my daughter and I reached the parking lot after our Sunday afternoon visit to Mom at the big hospital a bed opened up at the rehab she was hoping to return to late afternoon today and by evening Mom was settled into a room! Previously she faced a beautiful courtyard there that she enjoyed for a day and now she’s on the other side of the facility and was pleasantly chatting about all of the black cows outside of her window facing a farmer’s field. Hoping for her ability to persevere with bone on bone knees as getting them replaced is the next step and being on them is never pleasant. Hoping this is the last stop on a long journey from the initial emergent surgery at the small hospital nearly a year ago now.

  • September 4, 2025

    Responsive

    Shout out to an amazing neighbor who has been the MVP at texting me more often than anyone else to ask how Mom is doing, how her pain is, and what the updates are regarding her care. She is a retired physician herself and has answered many of my questions. She has been very responsive and very encouraging. And there are certainly others who have been incredibly empathetic and responsive as well.

    It’s a shame that the medical team has not called me once post “end of surgery debriefing.” I had them write my name on Mom’s white board and just like in the small hospital I can’t seem to get through to anyone in the big hospital when I call and when they told me they would put me through to he bedside nurse. They put me through to a voicemail. I never got a call back. And I am admittedly weary and burned out. I have been advocating THIS time around on this medical issue for Mom for 11 months now. Hospital systems and their staff, in my growing experience, are NOT supportive of the patient’s support system. If it’s not a liability concern it appears that they do not care.

    And Mom said this morning the attending surgeon did not come in to check on her. Rather two residents came in very briefly and asked how she was doing. She says she is feeling so-so as she has been telling them everyday. She also tells them the NG tube hurts and they simply said “it’s going to be there a while.” This was upsetting for her as the attending told her they were going to leave the NG tube in for another day and his statement implied that there might be a change after that/.

    I am an hour away with 4 kids, plenty of work for my two part-time jobs and trying to live apart from spending my life at the hospital. It’s hard to get there. But it appears that I have to be the squeaky wheel to receive bare minimum reasonable communication and updates. It’s ridiculous that Mom has been BACK in the hospital for 5 days now and not once have they given me an update. I only got one in the ED because Mom put me on speakerphone while the provider was in the room. I tried calling the ED multiple times and no one ever answered.

    Responsiveness to a patient’s people and empathy are in short supply in the inpatient system.

  • September 3, 2025

    Repeat after me, they are not responsible for lost or stolen items.

    It’s another first world problem for sure, but my elderly parents become quite testy when the items that they liked and that they spent hard earned money on disappear. We try to be careful and take only the bare minimum of what we need to hospitals and other care facilities, but the saga continues with the things Mom has loved and lost.

    And before I go on with the stories I will just say that as a working sandwiched only-child advocate for my mom and just having Dad, who is aging and has many of his own medical issues, and some peripheral help from family and friends, I just plain CANNOT be there with Mom and her things all the time EVEN during every admission, discharge, or transition. I have tried when she was being treated repeatedly at the small hospital which was 10-15 minutes from our home depending on traffic and lights. But now that she made a move to the big hospital just under an hour away, I absolutely have to rely even more on transport teams and facility staff members and sometimes I regret that that is the case.

    I believe the first incident was a nice charging cord being left in an ED room by a staff member who was pushing Mom’s gurney to her room upstairs in the small hospital during one of many re-admissions. I know I told a staff member about it before I left but it was the middle of the night in the ED and Mom insists that she told the person transporting her to bring it along but that was a time when heavy pain meds were on board so we are not sure what was communicated but the charger never made it to the next destination. Dad filed paperwork and they said they would cover the cost. I insisted that he follow through with that and I honestly don’t know if the small hospital ever reimbursed us for it but when you’re sandwiched some things just must fall off the list.

    The second items that disappeared were in an Acute rehab facility over the holidays. Mom had some white blankets from home with her bedding as she is always extra cold and our first mistake beyond bringing the personal blankets to a rehab facility in general was that they were white. When they change those beds every bed linen (ALL of them white) gets scooped up in a heap and hauled away to a laundry company who services several of the facilities. From the moment Dad reported the personal blankets missing they were long gone mixed into oblivion in a sea of white everything and could have been shipped back out to any one of the services facilities. Dad repeatedly asked for them to reimburse him for the cost of those brand name blankets and they showed him the form I had previously and quickly signed upon admission that said they are not responsible for personal belongings.

    Most recently, in the last week, Mom was discharged from the big hospital to their very nice Acute Rehab facility nearby and transportation on a weekend night on Labor Day weekend when I had taken the opportunity to go a few hours away to the shore with my husband and children and I was grateful for that transport team and the ambulance that took Mom to Rehab and the one that had to bring her back less than 24 hours later to the ED. I need to get Mom’s clarification on when the items were lost but one of the transport teams never brought in an arrangement of flowers from my aunt that traveled with Mom nor a pack of her personal briefs in which she chose to pack another cell phone charging cord and her favorite glasses case, all of which have now grown legs and run off on us. She had staff call the ambulance company but no one knows a thing.

    Just thankful that the glasses she needs weren’t in the glasses case. We always hope whoever has the items truly needed them more.

  • September 2, 2025

    Too Soon?

    The big hospital surgeon who performed Mom’s most recently surgery one week and one day ago came in and checked on her today and said he thinks this is all because she didn’t eat solids for so many months (following his orders to prevent another obstruction while awaiting surgery). Hope this informs them for the next person if it happens again. They won’t come out and say that they tried solid foods too soon. I mean I am not looking to place blame at all and I’m not angry. I just wish they would admit they should have waited a little longer before introducing the solids because if there ever is a next surgery (hopefully there won’t need to be but after almost a year of this I am always preparing for the next Q & A session with a doc) I want to be able to say that slowing down the reintroduction of even soft solid food in my mom’s seemingly special case should be considered to avoid setbacks. The NG tube is apparently STILL getting stuff out of Mom’s stomach and they have more than once told her that they are surprised that it is still emptying contents since it went in Saturday night. No EDD as of yet and we are left to wonder did they urge her Too Soon to consume solid food post surgery given her medical history in the last year of prior ileuses and previous obstructions and bowel nightmares. Can we ease our way gradually in recovery with the patients like Mom who tend to have setbacks? What’s the hurry? Readmissions are certainly not what anyone wants to see.

  • September 1, 2025

    Clarification and Realization

    So I am realizing more and more each day how much Mom is getting older and how she may or may not remember exactly what she was told by the docs while she is on meds and sleep deprived. It appears it is not an obstruction, thankfully!! But it is quite the Ileus situation. The doc who admittedly thought she was ready for discharge on Friday after merely passing gas stated that she too was disappointed to see that the usual protocol did not go smoothly with Mom post surgery.

    So Ileus, I understand to mean, is quite the slowing down of digestion in the intestines and it can be normal after surgery. So we are very thankful to hear that Mom’s surgery may have been a success and we certainly will take a longer recovery if that’s what’s necessary after a successful surgery with long-term improvements (Mom may be saying “speak for yourself” as a large NG tube is STILL days later emptying the contents of her stomach because soft solid foods seemed to have been introduced faster than her body was ready to tolerate them).

    She was thrilled that I texted beach pics to her today and my youngest read a page of a popular chapter book to her over FaceTime. My aunt and Dad visited today and there is a lot of hanging in here and waiting for next steps.

    Her body let us know it was not time for food yet and it was not yet time for discharge. Hoping she ultimately recovers more smoothly this time and that she comes home at just the right time for her body to be ready for that.