Thursday, July 26, 2012

Beyond the Borders: Getting young people out of Nursing Homes

Vitaglide Ceremony at Beth Abraham. George Gallego is far right
When I was in rehab learning how to live as a quadriplegic, my future didn't seem too bright. All I saw was a world of needing help with everything and losing a sense of my personhood. I could barely sit up, brush my teeth or feed myself. Would people just see my disability and not take me seriously? Enter in my mentor George Gallego among others who gave me hope that I could still live life and not just survive my paralysis. George is a paraplegic so he has quite a bit more physical capability than I do, but seeing how naturally he rolled into a room and carried himself made me see that my life wasn't over! Plus, brother had style and that made me want to get out of hospital attire and start dressing like myself again. I remember watching George, Jim Cesario and quad comrades like Alex Elegudin's every move and asking them tons of questions. "How do you pick up stuff from the floor?" "Do you use aids to type?" I still use their techniques and advise today. 

George began sharing more with me and told me his idea of developing an organization to get young people like me out of nursing homes and back into the community. I was very disappointed with the way social services at the hospital was advertising Beth Abraham, because it was very deceptive and less than honest. Social services in Beth Abraham are even more disappointing as they only focus on admitting/discharging but not on improving your life while here! There is nothing productive for young people here. They have great potential in this facility but fall short for a number of reasons. It's best to keep people here where medicaid/medicare will continue to foot the bill. Forget about empowering anyone to thrive beyond this place. 

I supported George and his idea and even took a grant writing class to further support his endeavors. I helped get a vitaglide for Beth Abraham and felt very motivated to learn what I could about how non-profits operate. I got a better sense of how Beth Abraham works as a non-profit organization and looked forward to seeing George's new organization develop. 

Unfortunately, I began to suffer from many UTIs and was in a tremendous amount of pain. I lost a lot of weight and was in the hospital frequently. The best solution for me was to have a mitrofanoff procedure which was a process in itself! It was a long, difficult surgery that took months to recover from. Everything that that I was pursuing came to a halt and a some points, I wasn't even sure if I would live. 

Since then, I'm doing better physically, but still struggling with trach issues. I've been pretty home bound and focused on eternal things. I take one day at a time. It's even been difficult seeing myself out of here because I keep having surgeries. But advocating for my fellow nursing home residents has stayed on my mind. Not only for the young, but for the old. They've had careers, raised families and served our country. They deserve compassionate care that recognizes them as people, not just lumps of meat on the bed. But there's something about being young and in nursing homes. It's very depressing because you see your life as not really going anywhere even though you have many more decades to live. George is dedicated to changing this and I believe it will change more than he knows. When people recognize how many people with disabilities are in the community, it will spur policy change and better urban design. Already, concepts like "aging in place" are catching fire in the real estate realm as baby boomers age and need accessible homes. People are starting to realize that they need to prepare for things like a knee replacement, difficulty reaching, caring for elderly parents. 

George Gallego and his wife Julia
Not everyone has the means to purchase and modify a place and accessible apartments/homes are hard to come by, especially in the city! Some young people with disabilities are incredibly motivated to play sports, finish school, or hone in on a skill for a career. Living in a nursing home limits these opportunities and can make one feel trapped. Many with disabilities have their whole lives ahead of them and have something to contribute to the community.  George is competing in the NYC Ironman Triathlon in August. This is a hardcore event and he will be the only paraplegic competing! He is raising funds for his organization, Wheels of Progress, Inc. Won't you join me in this cause and give a contribution? You can donate here

Tuesday, July 17, 2012

The Reality of living in a Nursing Home

I've been living in a nursing home for the past four years after leaving SCI rehab. The first difference I noticed was in the rehabilitation program. It was not as thorough as Mount Sinai in developing ADL (activities of daily living) skills, transferring and bed mobility. This would be particularly true for quadriplegics and our therapy time was short lived. I was told that I would get range of motion but that never happened. The second thing I noticed was the quality of nursing care. Although there were many people with spinal cord injury at this facility, the nursing staff was completely unaware of things like autonomic dysreflexia and how to properly carry out bowel care. From then on, I had to aggressively monitor and direct my care, making sure I had the right meds and kept a bowel routine. I also had to contend with the lack of consideration and dignity from people who seemed to have no cultural sensitivity training. Everything from their noise level in the morning to the way they handle resident's bodies.

I think it was in 2010 when the director, Margaret Rivers, stepped down and Beth Abraham had a number of changes in their administration. After a while I noticed the staff complaining of staff shortage, particularly CNAs in the 3-11pm shift. It went from 5 to 4 to sometimes 3 for 40 residents on the floor. There's only 1 nurse on the floor to do medications, finger sticks, tube feeds, cathing, suctioning, wound care, etc. It's a lot of work! Most recently, they've been having the evening nurse not only do the floor by herself, but go to other floors to do treatments! That means, if someone needs a nurse while she's out, they're out of luck! I've seen low morale on the rise amongst the staff, the nurses more curt, rushed, forgetting treatments.

I've addressed this issue of staff shortage for about a year now. I've addressed it to Medicare/NYSDOH. Residents have brought it up during town hall meetings. I know staff has complained to the administration about it. All has seemed to fall on deaf ears. Last night was at it's worst. I rang the bell to get cathed and waited half an hour before a CNA burst in with my dinner tray (not to answer the bell). I told her I needed to be cathed and waited another half hour before ringing again, feeling my bladder full and blood pressure high. Luckily, my mother came in and helped me cath. The bell remained ringing but no one answered for an hour and a half. Then a supervisor came in and I addressed the situation. She gave me my meds at 8pm. My mother helped me cath at 6pm so I was due to cath again at 10pm. No nurse. My mother helped cath me again before leaving. If she did not come in, who would help me cath? Surely the nurse was not there to help. My father is more proactive in these matters and spoke to the nurse. Apparently, she just came to relieve the original nurse but did not want to disclose who it was. We wrote a formal complaint with security and apparently, the nurse on the floor was the supervisor! No wonder nothing was getting done! Bells weren't getting answered, treatments fell by the wayside. Usually, this supervisor is around on the day shift to yell at people in a most unprofessional manner. I'm glad she got a taste of how hard it is to work as the only nurse on the floor.

 They're really trying hard to keep it together and resell this nursing home as Center Light Healthsystem,  but I don't know how long they can continue like this. There is a real problem with employee dissatisfaction that will erode the productivity and quality of this organization. I know part of the problem is Medicare reimbursement rates not increasing and I don't see that happening anytime soon considering our failing economy. It sucks because this can be a great facility. For $15,000/month, it is not worth it. The best component of Beth Abraham is their Therapeutic Recreation team. Although they lack engaging programs for the younger population, they are open to new ideas and are a super friendly bunch. The volunteer department is also very fruitful as young people learn how to serve their community and help minister to practical needs.

It is by far cheaper and healthier (in my opinion) to live in the community as long as you can. I know I'm looking forward to jumping this ship! I'm so thankful my father lives close and has been a strong advocate for my resident rights. Being paralyzed and voiceless, it's like you lose a part of your personhood! People can ignore your bell, but if you call the office phone, there's more urgency to answer because the person on the end is usually able bodied. If my father physically goes  to the nursing office, then they will respond to my complaint. If you don't have family to regularly visit and advocate for you, forget it, you will be left to the wayside. I know it will be a huge transition living outside of this system, but hopefully I will be able to participate in the community more and be stuck dealing with this condition less.

Folks, it is so important to plan for your parents or yourself if any serious condition occurs. If you can, live in an accessible place. Write a living will and choose a healthcare proxy. Most of all, think about where you will spend eternity after you're gone. There's to much fine detail in this universe to conclude we are here by accident. "Seek ye the LORD while he may be found, call ye upon him while he is near: Let the wicked forsake his way, and the unrighteous man his thoughts: and let him return unto the LORD, and he will have mercy upon him; and to our God, for he will abundantly pardon." Isaiah 55:6-7