Have you ever felt a little off about something but thought, no, I’m not being fair, I need to give this person/place/institution/group a chance? Well, we had this happen this week. Roy’s stint in rehab had a definite undercurrent of this. We had his follow-up with his PCP already scheduled for Thursday and decided we would make a decision after that reality-check. As his time in the rehab continued, we vacillated between this is going to be okay and this is really not okay.
We chose the facility based on the short list allowed by our insurance provider and the scores the facilities had. We hoped for good continuity of care based on this facility’s affiliation with the hospital system – apparently much more tenuous than the documents suggest. The social worker and case manager seemed to think that Roy would need the care of a rehab facility. While the rehab is affiliated with our hospital system, and so benefits from the reputation thereof, the rehab staff said that they did not have access to the same medical records system or seem to have any true understanding of why Roy was there or his needs as explained when he left the hospital. Some health-care professional friends let me know that the place does not have a good reputation, but if we were able to advocate for him, it might work out, especially if we brought in some back-up watchdogs. This felt a little bit like being told a potential date has a “good personality” so you won’t be too put-off by the date’s attire or appearance.
We encountered several kind aides and good PT professionals there, and a couple of good nurses, but yesterday it became clear that we needed to listen to the little voices of doubt and get him out. I actually woke up on Thursday thinking I needed to find out how to go about getting him discharged and getting different care – too many slightly askew, we’re going to get this, it’s not here yet, kinda things were adding to my concerns. I even pulled all my legal documents out to take with me in case I needed them (they never asked for copies probably because we never had an actual admission intake meeting). I was increasingly bothered that we weren’t being given any information – there’s no patient portal system in the rehab.
Roy got permission to borrow the wheelchair for our field trip to his PCP for the post-hospital visit. I am pleased to report that I actually managed to load him and the wheelchair into the Mazda on my own – wheelchair wrangling is not something I have mastered yet. During the visit, Roy explained the lack of a plan of care, the lack of attention to the catheter, the poor response to providing him low/no salt food, and me having to prod staff to get him medication. He told our PCP that he had not expelled any waste in over 24 hours – and I crossed the threshold toward needing to get him out immediately because this lack of toilet time is nigh on impossible if you are being given lactulose on a regular schedule in the prescribed quantity. The cherry on top of my sundae of mistrust came when we learned that our PCP’s medical assistant had her own family’s issues with the facility and had to rely on interventions from the social worker to get her family member the care they needed while there.
Our PCP referred Roy for home health care with physical therapy, wound care, and catheter care. He also gets to go see the podiatrist for an odd little bump on his foot. We got that scheduled and got the referral for home health going and went back to the rehab. Cathy came over to help get Roy moved out. She arrived just in time to join me for a frustrating and testy conversation with the administrator and stayed through the meeting with the social worker to get the home health referral finalized and the nurse to get him officially discharged with his home medications, a copy of the lab work done (that we’d never seen), and a copy of an admissions document that we had never received. Cathy followed us to the house to get everything brought inside.
Managing his recovery will be a little bit harder but also a little bit easier at home. For example, I now know that Roy has taken his medications, at the proper dosage, at the correct times (even the dreaded lactulose!). I am not pestering staff to get things for him, bringing in food for him, or commuting back and forth. His catheter and wounds are now being tended. He is able to eat actual food within his dietary parameters. (And Russ came to visit and brought Salata which was a welcome treat.) He’s sitting in his recliner with his TV and books etc. It’s a little bit harder because he’s using the walker and I don’t completely trust him walking with it on his own yet. He slept in his recliner last night (by choice so he could elevate his legs to help the edema recede) which meant calling me to wake me up to trek to the accessible bathroom. This may be easier after today because the rehab social worker ordered a wheelchair for him and it will arrive this afternoon. She was highly competent and knew how to help.
Home Health has already been in touch. They are approved and will be here for the initial assessment and planning tomorrow. We are also consulting with Maggie to determine where any holes are in his care. She met with us today and will be helping us double-check what’s being offered and if Roy’s needs are being met.
We had a video visit with the nurse practitioner at Oncology this morning too. Afterward, she made an appointment for a video visit with the oncologist for Tuesday. Essentially, we are not sure what the options are for tackling the cancer after this educational jaunt through the Emergency Department, hospital and rehab and into home health care, but we want to find out and determine next steps. We are pretty certain that we do not want to repeat this particular loop so a new approach, or a very heavily modified one, will be required.
The moral of this week’s story is to listen to those imps who are saying ” are you sure about this?” even when you are tired or don’t want to be “that person” or are hoping for more, or the physical plant is pretty and clean. Your gut may not always be right, but when the bad vibe gets amplified as more and more strings are strummed, it is definitely worth asking if other people see this, think this is correct, or would have their loved ones under this care. Sometimes we don’t have a choice – the health care system in this country is seriously compromised by profit-making entities at all levels – but when we do have options, we need to get the best possible care we can. Sometimes that means we have to scamper and try something else. Then, maybe, we can all work together to make sure nobody gets stuck where they don’t get the care they need (there are still all those other patients out there and health care providers trying to help through the brokenness). I’m not sure how to do that for all of us but I am sure that we can collectively do better.
Waiting 
Leave a comment