Sandwiched Support

Tag: family

  • 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 17, 2025

    I’ve Lived Your Life

    Dad has been what we used to refer to when I was a kid, “An Absolute Trooper” with just about everything going on with Mom’s health for honestly what has probably been over a decade now. He has made her meals when she could barely walk due to her knee issues which was a lot of the time prior to his massive heart attack and quadruple bypass. Now he stays active and has been truly an asset in supporting Mom through ongoing physical and emotional struggles.

    I have a lot that I do when it comes to advocating for the health and medical needs of both of them. But having him providing all kinds of support to her including direct support, various shopping for needs, and lots of visits has been a tremendous help because I have no siblings and my husband and I have four children and we work and has a lot going on.

    He has been retired for several years but he selflessly helps support my two work days out of the house and the work I do from home by driving our kids to and from the bus stop (3 different buses this year) every school day. There is quite a lot that would not be possible if Mom and Dad did not choose to live with us and it has given us the opportunity to support them in many ways and for them to provide support in small ways as we raise the kids

    Having said all of that, Dad was frustrated with me this morning because I forgot for the millionth time to put things clearly on the written calendar on the kitchen island and I scheduled some appointments for him, to which I accompany him, at a time when he has plans to drive a couple of hours out of town to visit his brother who is in a long term care home. Understandably he was frustrated, but I pointed out that he is retired so there’s much more flexibility in his schedule to make some changes.

    That frustrated him because he has had this visit on the calendar for months and he is right that I did not give him proper notice. However, in my defense I absolutely have a point that he can be flexible and I ended up rescheduling the one appointment (the most important one is at 7 AM and he can still get going pretty early). But he ended up saying to me that he’s loved my life and basically now has the right to not have to be flexible.

    Um, no sir, I reminded him quickly, you have NOT lived my life. You had one child, not four, and Mom lived a similar life to mine (caring and advocating for her aging parents while raising me and at times trying to start a business for part of my childhood). You sir, did not. You lived the workaholic, non-primary parent’s life and you were not a caregiver of anyone while your child was growing up. You did not live my sandwiched life.

    I have been sitting with this post for several days and we all have different roles in our journey, but I stand by my right to remind Dad that he has never lived through the roles and that life has handed me in this timing.

  • 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 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. 😎