My husband asked that I write about my experience as a patient in the skilled nursing facility, Lifecare Center of Federal Way. It's a difficult endeavor due to my many traumatic experiences and the impact of fear and anxiety it left upon me. I hesitate because I don't want to insult the few good souls who made it bearable.
One may wonder why I did not document issues as they occurred. At first, I was unable to write due to the progression of ALS. Although, I owned a speech generating device, it was new and I was unpracticed. Additionally, I was having issues dealing with either frontotemporal disease (FTD) or PseudoBulbar Affect (PBA). My emotions were raw and I was laid open to impulsivity and acting rashly. (It's important to know what these conditions are NOT. They are NOT dementia. They do NOT effect cognition.). I mention these deficits, not to evoke pity, but to gain understanding. Finally, I was intimidated. Fear of reprisal was more than a vague fear, on at least one occasion, it was reality as I got booted from my private room within days of reporting poor conditions and care. My attempts to be heard and helped by the facility and, subsequently, the state, failed to get results.
Mine was an atypical period of adjustment. I was trying to come to grips with being abandoned in my home when my only crime was an illness I had no part in causing. For three months, I dealt with the abandonment of my family and friends who neither visited nor called. No cards, letters, nor flowers. I was wrenched away from everything I loved, trusted, or held dear, and left in the care of strangers.
At Life Care Center of Federal Way, my disease, and it's syndromes, were a rarity to which they were wholly unprepared to deal with, despite their claim of expertise and ability to provide care. In the words of the executive director, Danielle "Danni" Orse, "Life Care Center of Federal Way is a 'for profit' facility first...". This was used at my care conference, a forum that was supposed to be used to discuss my care needs. This attitude permeated the length of my stay, I was approached for payment by the onsite social worker and by the executive director despite not having access to funds. These guerilla tactics added to my lack of trust, anxiety, and fear.
I recognized my excessive crying and inappropriate responses, like laughing at sad or serious moments and vice versa. I knew that a certain amount of grief, rage, and self-pity was normal but, eventually, I saw the need for help. Perhaps, due to my years in recovery, I was cautious regarding "medicating my feelings" rather than feeling the feelings and working through them.
Through voluntary counseling, I began a conservative approach to antidepressants. Unfortunately, antidepressants aren't the quick fix that they're purported to be. It takes about 30 days to level off and see where you're at. Also, unfortunately, the medicos of the facility are big on fast results and kept suggesting increased dosages long before the recommended time period. They got nothing but pushback from me until the drugs took full effect with no missed dosages. I had to become my own advocate and protect myself from the caregivers. This under-medication was not without incident.
Initially, when I would get distraught, I was allowed to exit the building to get some fresh air and get myself together. However, one evening I was, unceremoniously, denied access to the outdoors. Uncharacteristically, I panicked and struggled with the caregivers who barred my way. The more they restrained me, the more I fought to get out. Without knowing how to operate my sophisticated power wheelchair, a nurse, previously unknown to me, seized control, spinning the wheels (damaging the drive), and sending me into further distress. Many caregivers surrounded me, I was visible to the dinnertime residents, my sister-in-law looked on. I couldn't have been more humiliated if it was televised! I tried to exit my wheelchair, momentarily forgetting that I'd be too shaky to sustain the action.
In front of everyone, I was forcibly removed from my wheelchair and lain upon the ground while they called an ambulance. While I was angered by the whole incident, I had calmed down. I calmly told them I did not want or need an ambulance to no avail. I told them if they went through with an ambulance ride and trip to the hospital that they would be responsible for payment. They sent me anyway.
During my trip to the hospital, I was treated rude and told that I had dementia. Of course, I don't have dementia, and even if I did, I would still deserve respect. When I asked the EMT where he got the idea that I had dementia, he said the nurse (at the facility) told him.
I languished in my room as punishment for behaviors caused by my disease. My customized wheelchair was taken from me and locked away for weeks before I was allowed to sit in it. This was despite explaining the medical necessity of the customized support it allowed me to maximize my impaired respiration and reduce fatigue and enhance energy conservation.
Additionally, my wheelchair was modified, making it unsafe for operation in public. They blithely, took my mobility away, making it impossible to take the Access bus anywhere.I was denied access to the outdoors unless I went out with the smokers. Though I had an illness with a respiratory component mattered not one bit. When I arrived, the facility was non-smoking; shortly thereafter, the facility became smoking. At this time, caregivers became smoking attendants, removing them from helping patients with healthcare needs. At one point, caregivers were told to keep the smoking schedule lest they go on report. This resulted in longer delays of getting help.
Fine dining, printed on the brochure, was a bald-faced lie as I learned. The menu described lovely meals that differed greatly from the reality of the fourth rate over-processed, institutional cardboard we got.
While I was in residence, a resident was caught selling methamphetamines from his room across the hall. I had money stolen from me on three separate occasions, calling the police twice. I endured nightly screaming, daily obscenities being yelled, and old men disrobing in the hallways, (one, outside of my room).
The management of the facility was long on control and short on treating patients with respect due to a normal US citizen. Caregivers were spread way too thin and not given enough resources to properly do their jobs. Intercoms to the rooms would allow triage and prioritization, catching life threatening calls rather than making people "wait their turn". And the "wait your turn" approach is flawed in that, lights go on but there's no way to tell who's light came on first, second, third, etc. I waited for hours to get my soiled "diapers" changed on more than one occasion.Worse yet, I choked and passed out twice, while wearing my bipap mask and no caregiver gave me aid. I feel fortunate to have survived Life Care Center of Federal Way.
This is, by no means, a complete compilation.
One may wonder why I did not document issues as they occurred. At first, I was unable to write due to the progression of ALS. Although, I owned a speech generating device, it was new and I was unpracticed. Additionally, I was having issues dealing with either frontotemporal disease (FTD) or PseudoBulbar Affect (PBA). My emotions were raw and I was laid open to impulsivity and acting rashly. (It's important to know what these conditions are NOT. They are NOT dementia. They do NOT effect cognition.). I mention these deficits, not to evoke pity, but to gain understanding. Finally, I was intimidated. Fear of reprisal was more than a vague fear, on at least one occasion, it was reality as I got booted from my private room within days of reporting poor conditions and care. My attempts to be heard and helped by the facility and, subsequently, the state, failed to get results.
Mine was an atypical period of adjustment. I was trying to come to grips with being abandoned in my home when my only crime was an illness I had no part in causing. For three months, I dealt with the abandonment of my family and friends who neither visited nor called. No cards, letters, nor flowers. I was wrenched away from everything I loved, trusted, or held dear, and left in the care of strangers.
At Life Care Center of Federal Way, my disease, and it's syndromes, were a rarity to which they were wholly unprepared to deal with, despite their claim of expertise and ability to provide care. In the words of the executive director, Danielle "Danni" Orse, "Life Care Center of Federal Way is a 'for profit' facility first...". This was used at my care conference, a forum that was supposed to be used to discuss my care needs. This attitude permeated the length of my stay, I was approached for payment by the onsite social worker and by the executive director despite not having access to funds. These guerilla tactics added to my lack of trust, anxiety, and fear.
I recognized my excessive crying and inappropriate responses, like laughing at sad or serious moments and vice versa. I knew that a certain amount of grief, rage, and self-pity was normal but, eventually, I saw the need for help. Perhaps, due to my years in recovery, I was cautious regarding "medicating my feelings" rather than feeling the feelings and working through them.
Through voluntary counseling, I began a conservative approach to antidepressants. Unfortunately, antidepressants aren't the quick fix that they're purported to be. It takes about 30 days to level off and see where you're at. Also, unfortunately, the medicos of the facility are big on fast results and kept suggesting increased dosages long before the recommended time period. They got nothing but pushback from me until the drugs took full effect with no missed dosages. I had to become my own advocate and protect myself from the caregivers. This under-medication was not without incident.
Initially, when I would get distraught, I was allowed to exit the building to get some fresh air and get myself together. However, one evening I was, unceremoniously, denied access to the outdoors. Uncharacteristically, I panicked and struggled with the caregivers who barred my way. The more they restrained me, the more I fought to get out. Without knowing how to operate my sophisticated power wheelchair, a nurse, previously unknown to me, seized control, spinning the wheels (damaging the drive), and sending me into further distress. Many caregivers surrounded me, I was visible to the dinnertime residents, my sister-in-law looked on. I couldn't have been more humiliated if it was televised! I tried to exit my wheelchair, momentarily forgetting that I'd be too shaky to sustain the action.
In front of everyone, I was forcibly removed from my wheelchair and lain upon the ground while they called an ambulance. While I was angered by the whole incident, I had calmed down. I calmly told them I did not want or need an ambulance to no avail. I told them if they went through with an ambulance ride and trip to the hospital that they would be responsible for payment. They sent me anyway.
During my trip to the hospital, I was treated rude and told that I had dementia. Of course, I don't have dementia, and even if I did, I would still deserve respect. When I asked the EMT where he got the idea that I had dementia, he said the nurse (at the facility) told him.
I languished in my room as punishment for behaviors caused by my disease. My customized wheelchair was taken from me and locked away for weeks before I was allowed to sit in it. This was despite explaining the medical necessity of the customized support it allowed me to maximize my impaired respiration and reduce fatigue and enhance energy conservation.
Additionally, my wheelchair was modified, making it unsafe for operation in public. They blithely, took my mobility away, making it impossible to take the Access bus anywhere.I was denied access to the outdoors unless I went out with the smokers. Though I had an illness with a respiratory component mattered not one bit. When I arrived, the facility was non-smoking; shortly thereafter, the facility became smoking. At this time, caregivers became smoking attendants, removing them from helping patients with healthcare needs. At one point, caregivers were told to keep the smoking schedule lest they go on report. This resulted in longer delays of getting help.
Fine dining, printed on the brochure, was a bald-faced lie as I learned. The menu described lovely meals that differed greatly from the reality of the fourth rate over-processed, institutional cardboard we got.
While I was in residence, a resident was caught selling methamphetamines from his room across the hall. I had money stolen from me on three separate occasions, calling the police twice. I endured nightly screaming, daily obscenities being yelled, and old men disrobing in the hallways, (one, outside of my room).
The management of the facility was long on control and short on treating patients with respect due to a normal US citizen. Caregivers were spread way too thin and not given enough resources to properly do their jobs. Intercoms to the rooms would allow triage and prioritization, catching life threatening calls rather than making people "wait their turn". And the "wait your turn" approach is flawed in that, lights go on but there's no way to tell who's light came on first, second, third, etc. I waited for hours to get my soiled "diapers" changed on more than one occasion.Worse yet, I choked and passed out twice, while wearing my bipap mask and no caregiver gave me aid. I feel fortunate to have survived Life Care Center of Federal Way.
This is, by no means, a complete compilation.
Comments
Post a Comment