Monday, May 16, 2016

Chapter Three, Part 2: Safety First

Just after Dad was moved to a room on the neuro floor, reinforcements arrived; my husband and my daughters, my youngest sister’s husband, and my brother joined us, a welcome distraction for Dad and much-needed support for my mom, my sisters, and me.  

The first order of business in the new room per Dad’s request was getting his face shaved.  Due to the lingering problems with sensation and strength in his left arm and hand (his dominant), Dad needed help shaving, and my brother-in-law volunteered for the job.  “I feel better already!” Dad exclaimed when they were done.  He wanted his head shaved too, but we reminded him that the surgeon had said the incision couldn’t get wet yet so that part had to wait.  

“I think I’m finally tired of watching football,” he commented later that day.  He was an Auburn University graduate and a fan of their football team, and so we thought he would enjoy watching the game on TV that afternoon.  His attention span and his energy level were not up-to-par, though; he couldn’t handle watching TV or even having a conversation for more than a few minutes at a time.  He repeatedly requested that Mom bring his cell phone and/or his laptop to him at the hospital; at one point he even said, “She keeps hiding it from me so I won’t do work.”  We pointed out to him that he had just had brain surgery a few days before, but he was unwavering in his campaign to get possession of especially the cell phone back.

Full disclosure:  we weren’t just worried that Dad might overtax himself if he was given his cell phone and/or his laptop. We wanted to protect the brokerage company for which he worked, his clients, and most especially him because we knew that his memory, reasoning, and impulse control were skewed.  We couldn’t tell him that, though, and he wasn't able to realize it himself, but as a result he was frustrated and sometimes angry about the lack of access and independence.

As an occupational therapist, I started asking about Dad getting OT and PT right after his surgery, and the Pass the Buck/Wait and See Game continued.  First we were told he would get therapy when we got to a regular floor instead of the ICU.  Then we were told they “don’t do therapy on the weekend (even though he was moved to the regular room in the early afternoon on Friday).  Evidently, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon (a different one from the one who gave me a fake non-working cell phone number the night before the surgery) came to visit on Saturday, he asked how P.T. was going and was surprised when we said it wasn’t.  About an hour later, OT and PT showed up.  They had Dad sit up on the side of the bed and use the walker to get around the room a little (he was unsteady during both of these tasks) and checked his movement and strength (fine on the right, not good on the left).  **Side note:  Dad wasn't really discouraged or bothered by his newly incurred "issues" or the fact that he had gone from being Ironman-ready to needing help walking in less than a week, which speaks very loudly to the point that there was as much of a cognitive deficit present as there was a physical one.**  The therapists let us know right away that they recommended a short stay in an inpatient rehab hospital and that they thought we should go and visit a few in the area right away since the doctors were already talking about discharge in a couple of days.  

Dad wanted to go home, and we wanted him to be able to, but the more we watched him struggle with the physical aspects of tasks and – even more to the point – the cognitive aspects, particularly the safety precautions and his own limitations despite repeated warnings from the staff and from us, the more we became convinced that it wouldn’t be safe to take him home yet.  We considered taking him home and setting up the therapies on an outpatient basis, but we were told that outpatient rehab would take place two or three times per week at the most, and of course it would require someone to load him in the car and drive him to and from a therapy facility.  (The logistics of the latter were more extensive than I feel like I can clearly explain.  Let's just say that Dad's impulsiveness and his "I can do it myself" attitude were not a good combo.)  Obviously, we thought, the more therapy he gets in the acute phase of recovery, the more quickly he will regain function, and so we changed our focus from taking him home to finding the best inpatient rehab facility in the city.

That Sunday, on Halloween Day, we toured two rehab facilities.  (We considered a third but it was part of a nursing home, and we knew that would be too hard of a blow to Dad, and - truth be told, although I am sure this was not part of our thought process at the time - on us.  I kept picturing us driving up to the nursing home/rehab facility with Dad in the car and hearing him say "What the hell? Are we looking for another nursing home for my mom?")

The first rehab facility we toured was near the hospital where Dad was; there seemed to be lots of patients there who were fairly young and who had a military background, which we thought Dad would prefer more than geriatric stroke patients, but this place had strict visiting hours for family which did not include overnight stays.  Basically, they didn't allow anybody but the patient to be there during any unstructured time - the time that was exactly when Dad wasn't safe when left by himself.  ("What the hell??" indeed!)  They said they wanted the patients to rest and/or to work on doing things for themselves during that time, which sounds great unless someone has had a series of traumatic brain insults like Dad had (the tumor, the lack of oxygen when he stopped breathing during the MRI, and the surgery).  Other than proposing the use of a "bed alarm" which would be set to sound at the nurses' station if (when) Dad got up by himself when he wasn't supposed to, they could not give us a plan for how they would keep him safe since he persistently tried to get out of bed and walk around without the walker and without paying attention to safety rules.  The bed alarm was not nearly adequate; he could easily have been up and in the floor with his only-partially healed skull/brain knocked against the floor by the time someone heard the alarm and checked on him.  The lack of plan, and our concerns about his safety, very obviously, were a total deal breaker.

The second place on our list was about 15 minutes further away from my parents’ house and was a rehab floor in a hospital; our reinforcements had to leave at that point and so Mom stayed at the hospital with Dad while my youngest sister and I continued the reconnaissance.  (The hospital where Dad was didn’t offer rehab stays - once the patient was "medically stable," he was to be discharged.)  This second place seemed to be well organized, and, when we spoke with the admissions coordinator and told him we were seeking a very short-term stay with aggressive therapy services, he said that could be arranged and that family could be with him 24/7.  Done.

We returned to the hospital and told Mom about our findings, and then she told Dad that she wanted him to go to rehab instead of going straight home to speed up his recovery.  He was onboard with the plan even though he really wanted to go home; he was highly motivated to “get back on track,” he said.

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