Sandwiched Support

Tag: mom

  • September 22, 2025

    I brought Mom home from the big hospital’s rehab today. It was a quick run up and back with a full afternoon of online clients and evening activities for the kids ahead. We did not have a big reunion as she was ready to head through the door into the suite she and Dad share. Each kiddo did go in and greet and spend time with her, but the mamarazzi wasn’t there this time. At this point we are deeply grateful while also on the edge of our seats praying that as far as this medical journey goes (this one that started last October 19th) maybe we will wrap it up before a year. She was rehospitalized again last week Monday-Wednesday and was able to return to the rehab at that time with planned discharge home today with home health nursing, PT, and OT starting Wednesday of this week.

    It feels a little like Groundhog Day kind of in the worst way while also allowing for very cautious optimism because there has not been a post-surgery blockage.

    We’ll take it, but it’s also true that We’ll take it from here. Some progress takes place more smoothly at home and we are hopeful that that will be true for Mom.

    Practicing acceptance that recovery and healing is rarely linear.

  • September 19, 2025

    Where’s That Uniform

    I’ve tried to train them to put the dirty uniform right on the laundry room floor. I used to forget to wash them on time pretty often before I did that. Now I will see soccer, baseball, dance, robotics bunched up in an inside out heap on the floor with tights and tall socks intermingled and be immediately reminded to spray those stains and toss it all in with the next load. For my oldest two I can hand over the responsibility for the freshly laundered and folded stacks right away and they will know where they are when it’s go time.

    Game time or Show Time or Practice (yep even at the practices for some activities there is a dress code or uniform required) comes along and my younger two have no clue. Gotta keep working with them on this….in my spare time.

    The other day I managed to clear and sort everything on the laundry room floor (kind of a big feat at our house in this season of life) trying to find my youngest son’s soccer uniform to get it clean in time and we realized it was in his hamper in his room the whole time. Same deal with my daughter. Not where the items needed to be. Up in her hamper as well.

    Trying to bring to life systems that work for our actual schedules. Now if everyone would join me in them. I guess that’s the rub.

  • September 18, 2025

    Inservice

    Tomorrow is a random inservice day quite early in the school year and our kids have off from public school. There will be two and a half days off in October as well around conferences though they don’t have Columbus Day off in the same week. I see parents on social media talking about this often, that the kids seem to have more and more days off or half days and days that are not as often around holidays. We found ways to have fun. I am writing and posting these posts late and our oldest two sons played their first rounds of 9 holes of golf with Dad which went really well, our third son had the time of his life at an outdoor adventure place with a small group of friends for the friend’s birthday, and I had a big play date at our house with a bunch of my daughter’s friends. Play date went great but it was an all-day commitment. Then I had some tickets for an amusement park that were going to expire so the kids lived their best lives Saturday and then sports Sunday afternoon. Quite often I am choosing between catching up the pages of work I need to enter into the computer and laundry, organizing, and tidying up. I am sitting at soccer practice now catching up the blog posts because I let them lapse last week. Not feeling super well and sometimes it all feels like a lot because in this season, it truly is.

  • September 16, 2025

    This is not a cutting matter.

    If a surgeon is being asked to do anything beyond determining if surgery is needed, if post-surgical healing looks to be on track, or of course surgery itself they seem to unequivocally prefer not to.

    I get it, they are the highly trained specialists and the only ones who can perform the surgeries (along with other types of providers and specialists on their team and similar teams). So they seem to want the hospital to pass the patient, with post-surgical complications, onto another department of providers (in Mom’s case it’s been internal medicine or GI) to monitor and treat them if there is nothing that warrants emergent or scheduled upcoming surgery.

    But yet the hospital wants them to show up each time to follow through with making sure the patients they operated on are taken care of. Seems reasonable and understandable until you factor in how busy they are and how few of them there are and you start to notice them getting short with abs frustrated with the patients who return with pain, with “inflammation,” with complications.

    From being unsettled and taking a longer time to heal and recovery than the average patient of the same age and condition (this seems to be Mom’s situation right now) up to the need for emergent follow-up surgery and everything in between I’m sure they see so many patients that it may be difficult to keep up with it all.

    So what are the hospital systems doing about this? Can there be more PA’s and NP’s who are trained by the surgical team and work for them and with them to provide excellent follow-up care not just in the office post-op, but also with the more complicated situations where patients are readmitted post-surgery with a variety of problems? Certainly the surgeon who operated on the patient and the team should be closely involved at looking at all scans, ordering tests, and weighing in on the treatment plan after considering all relevant information, but surely other educated medical providers who are not operating can provide supportive care as the patient is under observation.

    Can we come up with a better system where someone who has time truly listens to the patient and the patient’s family/advocates/support people to get the full picture while tests are being run? Can those individuals be trained to diagnose and treat post-surgical complications that do not appear to involve the need for further surgery to free-up the surgeons without leaving the patient and patient’s family feeling dismissed?

    How can the hospital teams communicate and work better together?

    And who can we assign to communicate with the family and other members of the support system on a regular basis to receive and answer their questions with empathy and compassion and to provide reasonable medical updates?

  • September 15, 2025

    Admit for Observation

    Mom has ongoing abdominal pain and is in the ED of the big hospital and they are going to admit her for observation for 1-3 days. Surgeon said earlier that the inflammation in the CT scan looked mild and Mom could go back to the rehab. Plain is not ongoing and they say admit 1-3 days. I wonder how we can know how long it will take, how long she will need.

    It’s tough to plan the week and when she might be discharged. It’s hard to know what to expect and to imagine next steps. There are worries that this could be last Fall all over again and everything that came with it. Dad says not to worry ahead of knowing what will happen and as a mental health professional I too know better, but in the sandwiches season it is a challenge not to fear the unknown.

  • 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 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.