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.
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. 😎
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.
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.
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.
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.
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.
My husband and children and I are away on a short trip and I am on a balcony with a moderately distant, but beautiful view of the bay. Below and to my left there’s also a back alley loading dock area full of trash cans, pallets, and plastic crates belonging to an upscale restaurant in the area where the employees sit on the dirty concrete stairs smoking one by one and staring off into the distance. This little condo is full of hopes, dreams, and little efforts to fix it up, but it and its complex remains dated and there’s plenty of evidence that it is not yet fully renovated. The price was right after our primary budget went to the trip out west.
I am allowing myself to just write once here per weekend. I haven’t written a Sunday morning post yet, but I figure anytime between Friday evening and before my weekday posts start again on Monday works.
I am struggling to accept all that might be coming next. Mom did in fact pass gas post surgery but did not meet goals from there. Her recovery was on track on Thursday with the aforementioned goal met and my family took the opportunity to seek the beach as an end of summer treat before sports are in full swing and while Mom was in seemingly great hands.
Somehow our setbacks with her medical status have often reared their ugly heads during holidays of all kinds. No sooner were we celebrating a shift in cautious optimism to a stronger hope that the surgery at the big hospital with the competent teaching surgeon fixed the problem, then Mom was starting to say she had pain again, though it felt somewhat different than before.
I spoke to the caseworker twice by phone about the plan to send Mom to an Acute rehab facility associated with the big hospital just down the road. The big hospital system was able to transport directly which was extremely helpful because Dad was visiting his brother who is in a long-term care facility out of town and my aunt (Mom’s only sibling) was dog sitting and on call to go pick up Mom and drive her wherever if she became ready for discharge, if the hospital system would not transport her, and if transport had to happen before Dad was available again late Friday.
Mom called Friday afternoon while I was on the beach saying that she was starting to have abdominal pain again and we were talking about whether they should have encouraged her to eat quite this quickly post surgery and post passing gas given her history of various issues (post initial emergent surgery in October 2024 at the small hospital). From Monday evening’s surgery things were going ok, though gradual, and she was having expected post-surgery pain. However, then they introduced soft foods without even being on just liquids post gas-pass for 24 hours. Mom and I and others questioned this and I still wonder why we cannot take baby steps with a medically complex situation like Mom’s. Passing gas Thursday morning, maybe we wait until at least Friday morning to move beyond liquids. Doesn’t seem unreasonable to me. But I suppose “protocol” whatever that means, encourages the food ASAP model. Or very likely it’s a managed care issue. Or even more likely a combination of issues.
I am sitting here dumbfounded that we are back here again. The caseworker got Mom into an Acute rehab where there are thankfully medical doctors because Mom wanted to come home if she was not going to go there because she did not want to be back in a Skilled Nursing Facility for rehab for a number of reasons.
Fast forward to yesterday I am very very grateful that they transported her to their acute rehab facility and that their docs, I believe, monitored her as her pain started right before she was taken to the rehab on Friday evening and worsened while she was there all of Friday night and into Saturday. And by last evening they transported her back directly to the ED of the big hospital where she had surgery Monday because nothing helped the pain or constipation situation and she was vomiting repeatedly at that point. And last evening over a puzzle with my 9 year old I got the news that Mom was back in the ED with level 10 pain, nausea and vomiting, and that she had been given all kinds of things at the rehab to help her pass her first bowel movement post surgery and all she got out was one very small hard part of a stool and nothing else and the pain and of course quite a bit of anxiety at this point once again continued.
I spoke with her on the phone a number of times last night and to the ED doc examining her by speaker phone on Mom’s cell phone. All I got is that they will do a CT with contrast. This is what I know to be a standard first step based on experience with Mom, but she had to drink the contrast while nauseous. Thank goodness for Zofran but that didn’t even completely do the trick. I fell asleep last night knowing she drank the contrast and that CT was to be around 11:30 PM.
I woke up at 5:45 AM needing to use the restroom and did so while reading Mom’s texts from 4:30 AM. She shared that she has another small bowel blockage (we were so sure and the latest surgeon seemed so sure that the problem area was resected on Monday but now that we’ve introduced some food back in we have the same or similar blockage problem again). She shared that she had a size 16 tube placed in her nose to avoid pneumonia and she said they told her it was needed to get all of the contents all of her stomach which is SO disheartening because she is texting me how uncomfortable it is and we have spent a lot of time during ED visits at the small hospital advocating for a child-size tube for Mom because her nose is small inside and she is a “hard stick” both when it comes to NG tubes and finding a suitable vein for an IV as well.
Waiting for the shift change to fully occur on this holiday weekend before I reach out for an update. Mom is not answering texts right now and I hope she is sleeping.
She meant so very well. She has always been warm as can be to my family and I and she is a compassionate, caring, mom and retired nurse. But today, after I sent a text update on my mom that included a family member on my dad’s side, she concluded a text of encouraging responses with “glad you can be with her.”
I hearted the whole text because I appreciate her love and encouragement, but here’s the thing, I’m not with Mom. And this brought up a little guilt I had to briefly work through today because, as planned ahead of time, my husband and I are away on a long weekend trip. We got the trip insurance in case something did not go smoothly with the surgery or the weather or a number of other factors. But we made arrangements for another family member to visit Mom today and to take care for our dog while Dad is also out of town for one night. And we hit the road knowing Mom is recovering and well cared for.
I was there for 9 plus hours the day of the surgery and the big hospital is almost an hour away. And I am not writing this because I think my family member would judge if she knew I wasn’t with Mom today, but instead because of the feelings it brought up in me. I have spent an unbelievable number of hours at appointments and in the ED and visiting at the hospital and with in-home care team members and ordering and picking up supplies and helping to provide care.
If you are an advocate or a caregiver, take note. Sometimes when our loved one is stable, recovering, and under the care of others (with or without loved ones visiting) it is helpful for us to focus on our kids and ourselves and to seize the opportunity to be away from where ongoing support may be needed in the future.
She meant so very well. She has always been warm as can be to my family and I and she is a compassionate, caring, mom and retired nurse. But today, after I sent a text update on my mom that included a family member on my dad’s side, she concluded a text of encouraging responses with “glad you can be with her.”
I hearted the whole text because I appreciate her love and encouragement, but here’s the thing, I’m not with Mom. And this brought up a little guilt I had to briefly work through today because, as planned ahead of time, my husband and I are away on a long weekend trip. We got the trip insurance in case something did not go smoothly with the surgery or the weather or a number of other factors. But we made arrangements for another family member to visit Mom today and to take care for our dog while Dad is also out of town for one night. And we hit the road knowing Mom is recovering and well cared for.
I was there for 9 plus hours the day of the surgery and the big hospital is almost an hour away. And I am not writing this because I think my family member would judge if she knew I wasn’t with Mom today, but instead because of the feelings it brought up in me. I have spent an unbelievable number of hours at appointments and in the ED and visiting at the hospital and with in-home care team members and ordering and picking up supplies and helping to provide care.
If you are an advocate or a caregiver, take note. Sometimes when our loved one is stable, recovering, and under the care of others (with or without loved ones visiting) it is helpful for us to focus on our kids and ourselves and to seize the opportunity to be away from where ongoing support may be needed in the future.
Sandwiched Support 