Stark, dark and surreal.
Not the family member’s stroke that brought you post haste to the hospital in under 30 minutes’ time. No, this would be the Orwellian moment when your ER doctor and his team of nurses, CNAs, etc. deliver a proviso you hadn’t counted on:
“Well, she is 96.”
Yes, before anything had been done to treat my mother, before any x-rays, MRIs or blood pressure checks had been done – or the life-altering post-stroke t-PA vaccine withheld – the ER team had already decided my mother’s fate would be based on her age.
Sure, they looked at the form we filled out giving Mother’s most recent medical issues. Included in the description were her dementia diagnosis and her being wheelchair bound due to arthritis in her knees. Of course, what the form did not provide space for were the qualifiers that would’ve prompted a less dismissive prognosis for her treatment and recovery.
Like, instead of deciding for us that it was potentially too dangerous to give my mother the t-PA shot most stroke patients receive upon arriving in the ER, the team could’ve let us make the decision. Clearly, when 50/50 is the best odds you can have, why not go for the best outcome available?
Plus, the team was not good at listening. My daughter and I each told them several times that a) Mother had DORMANT Non-Hodgkin’s Lymphoma, not Hodgkin’s Lymphoma, which could have potentially increased bleeding. So she could’ve received the shot, especially after it was determined that her stroke had been ischemic (clot-based) and not the more dangerous bleeding type of stroke.
As for the ‘dementia’ card, the team filled in the blanks themselves on Mother’s level of cognitive decline without ever having a conversation with us about it. We could’ve told them her level of function was limited only by her arthritic knees and now the stroke that had impacted the left side of her body. Yet she could still talk and answer questions while waiting for them to get all the testing done.
Waiting. Lots of it. Even though waiting is the last thing you want to happen post-stroke. There we were, waiting for the doctor and his crew to make a call on what would be next. MRI? No, later. Room for her? None ready. Anything? BPI and temperature and a CT scan.
Too much waiting so I’ll cut to the chase of what came next. Eventually – and after my daughter and I had to ask for it – Mother was given an MRI. Yes, she’d had a stroke, a massive one. Not likely she would recover. Well, not NOW!
What followed was four days of monitoring Mother’s vitals, giving her oxygen when it was needed (which wasn’t that often) and waiting. Four days with no food for Mother. My daughter and I had been slow learners to this point, believing all that could be done had been done. Then I realized what was actually going on. They were waiting for Mother to pass on without further treatment. We were at the end of Day 4 with no plans listed to connect her to a feeding source. I intervened.
The charge nurse that night assured me that the following day they would be hooking her up to a feeding tube. I told her four days was long enough, and I wanted it fixed now. One might argue the point of doing a feeding tube after business hours, but I had no reason to think the following day would bring food any more quickly. I asked the charge nurse what she would want done for her family member if she was me. She picked up the phone and called down to the department that could place a feeding tube in Mother using an imaging machine from radiology. This was after the initial attempt without the screen had failed.
Mother was now successfully hooked up to an NG tube that provided liquefied nourishment into her stomach. This did not sit well with the hospital’s doctors on staff the next day. It was about quality of life for them. We explained that we were about life as opposed to ‘assisted suicide’ and we would not continue to withhold nourishment from my mother. We withdrew DNR permission based on their overt willingness to dismiss Mother’s existence solely on age. Of course, when we learned CPR efforts could potentially break her rib cage and other bones, we reverted to an ‘intubation’ (oxygen) permission only.
Physical therapy and speech therapy became moot points since Mother was not sufficiently responsive on command. Basically, the doctor on call would walk in, say ‘Good morning’ to Mother and if she didn’t open her eyes and answer back, the doctor would move on to his other patients. No active therapy indicated.
During the next several weeks, we were counseled on Mother’s lack of positive prognosis. We reminded the medical team, case managers, social workers and end of life cheerleaders that, except for a feeding tube, Mother was there by virtue of her own will. We were not running her show, she was. Oh, and hey – she’s 96. Maybe someone should take into account her will to still be there in spite of all the discouragement and distancing from protocols to keep her here and functioning.
I mean, there were volunteers in their 80’s who came by to give us the antidote of encouragement that we so needed to keep going. The one guy had taken two months to cognitively snap back after his stroke, and he said it was a good while after that before he got the use of his left side again.
Mother was in the hospital for the better part of two months, finally stabilizing enough to be transported to a care facility. Our choice was limited to two facilities, the only two that accommodated patients with feeding tubes.
When the first facility failed in being able to replace the NG tube, Mother was transported back to the hospital for yet another replacement of her NG tube. She had managed to pull the tube loose on a couple of other occasions while hospitalized previously.
After being returned to the facility then again disrupting the tube and adding an infection, we placed her in the other facility.
The second facility also fell short on Mother’s feeding tube care which resulted in a very mild case of pneumonia that quickly subsided after a few days back at the bospital.
There’s no easy answer or protocol for a post-stroke patient of any age. Could Mother’s age be complicating or negating her recovery? Sure. But what has complicated the situation even more is having a medical community that discourages family members from even considering giving an elderly or near elderly family member the chance to overcome the challenges of having had a stroke; and to withhold and diminish the standard of care they’re eligible to receive.
What once was an honorable profession has become the shadowy hollow of its former self so it can disallow tbose patients creating too much drag on the bottom line, and eliminate those patients taking too much time to recover by encouraging family members to end their lives for them.
After having heard many stories of others who had pressure to end a family member’s life through withholding lifesaving measures such as feeding tubes, I just think we all need to be aware that our medical angels of mercy have an alternative, corporately obedient persona geared to serve the mercenary side.
Forewarned, ya know?
P.S. Score one more for “Ms. 96 and Still Counting”!
After her current care facility decided to discontinue all physical, occupational and speech therapy sessions, Mother started withdrawing again.
Her reconnection through talking and opening her eyes, and small hand gestures as a direct result of the therapies she’d been given became almost non-existent once those efforts ceased.
As we passed the two-week mark of no therapy, I called one of her doctors and related what was happening: that Mother was aware and withdrawing due to the lack of cognitive and physical stimulation.
What had been explained to us as an insurance issue when the therapies ended became just a matter of the doctor being advised of my mother’s level of connection and awareness that she was being discontinued in her efforts to thrive and survive.
So, we’re on therapy again! It’s only been a day since she’s been back on therapy, but her hand wasn’t as stiff when I checked on her yesterday. Though she may not regain all her physical abilities, she’s at least able to connect with what is possible for her while she’s still here with us.
And that’s the latest on ‘Ms.96 and Counting’ vs. the bottom line feeders. Put a number on that one, guys!