As I write this our good friend and blog contributor Martin Bayne is preparing to be discharged from the ICU at St. Lukes Hospital in Bethlehem, Penn., and admitted to Phoebe Ministries nursing home for short term rehab to recover from pneumonia.
Martin BayneBesides being a leading voice for disability rights and culture change, Martin has himself been living over a decade in various Assisted Living facilities as a result of Parkinson’s disease. Martin called me from the hospital today asking if ChangingAging would help him chronicle his journey of recovery as he transitions to short-term rehab to regain adequate health and mobility to return to his home at Sacred Heart Assisted Living.
Martin said that he was closer to death’s door this past week than any other time. He had a fever of 103, suffered hallucinations and blacked out two days. He remembers his doctor leaning over him at one point and saying, “Martin you are one sick puppy.”
Living with Parkinson’s disease makes Martin no stranger to health crises and visits to the ER. About four years ago a first year medical intern changed Martin’s Parkinson’s medication to Ropinerol without alerting Martin or his other doctors. Martin suffered a severe adverse reaction to the drug, which sent him into a state of psychosis. He was transferred to Ellis Hospital in Schenectady, N.Y., where he had a psychotic break. Martin said that three nursing aides to beat him to unconsciousness in a shower to subdue him during the psychotic break, causing two pulmonary embolisms. Martin did not press charges or report the attack. He spent the following 12 months in seven different hospitals recovering.
Since that episode Martin has lived at Sacred Heart where he says he has “really fallen in love with my fellow residents.” He is an active member of the resident’s council and spends much of his time video recording interviews with his fellow residents, especially those close to death. He also runs his own blog, The Voice of Aging Boomers, contributes regularly to ChangingAging and has written for the Washington Post and appeared on NPR’s Fresh Air with Terri Gross.
In addition to being a journalist and a zen monk, Martin is also a leading expert and broker of long term care insurance. Thanks to his decision to invest in a policy for himself in his early 40s, he has been able to live in Assisted Living this past decade rather than in a nursing home on Medicaid.
That could change over the course of the next few weeks. Martin must progress enough in short term rehab to qualify to return to his home at Sacred Heart. He is currently wheel-chair bound and must become ambulatory again.
I asked Martin what he fears about this transition and the first thing he mentioned was showering. I thought he was referring to the attack he suffered at Ellis Hospital, but he said showering is an activity he worries about every time he does it due to the risk of falling. In fact, at Sacred Heart Martin has his shower every day at 1 a.m. He does this because the night shift nursing assistants have less turnover than the day shift, so he has more confidence in their ability to safely assist him in the shower.
In a couple hours Martin will go through the intake process to enter a nursing home. He will go from living in a private room to having a roommate. He will be surrounded by people he has never met before.
As he has long done, Martin says he hopes to provide a voice and a first-hand account for an experience that most people must endure voiceless.
I will provide brief updates on Martin in the comments below and share news updates as I receive them.
UPDATE: Day 1 — An Uphill Battle for Martin Bayne
I just talked to Martin on the phone after publishing this and got some more positive details. First, he had a lot of positive things to say about Phoebe Ministries and their staff after living there for three days. “The staff here is really dynamic, really concerned on a personal level about the residents,” he said. “I’m finding the experience of living here to be very genuine and authentic.”
Martin said that Phoebe Ministries is over 140 years old and seems genuinely mission-driven. He said he’s going to look into their assisted living homes and would consider moving there instead of his previous AL home.
Before calling me Martin finished 90 minutes of OT/PT and said that he is seeing improvements. He was able to stand long enough to sort a deck of cards into suits for the first time since starting rehab.
Here’s my update: Day 1 — An Uphill Battle for Martin Bayne
https://changingaging.org/blog/day-1-an-uphill-battle-for-martin-bayne/
Hi all — I just checked-in with Martin and he is settled and doing okay. His sister is also his social worker and she managed to get him a private room. I’ll have a full update shortly.
I’ll be looking forward to the updates. I watched my young Uncle with Parkinson’s go through similar experiences in a nursing home, until he passed away from a CVA at the age of 69. As much as I encouraged him to speak out, he was too scared by “the system” to do so.
Martin, I wish you the best for your nursing home stay and hope that your dream of returning to Sacred Heart will be answered. Thank you for sharing your story.
Wow, Kavan. Very powerful. I hope that Martin’s journey is not too difficult. Please thank him for his interest in sharing his journey.