Many of the New York state regulations that apply to residences for people with memory issues have little to do with reality. They prevent administrators from providing a continuum of practical, cost efficient, safe and sensitive care for Alzheimer sufferers. My mom is 95 and has been in specialized memory care assisted living for the past 6 years, first in New Hampshire, now in New York. Soon my mom may have to move, because she no longer will meet the requirements to live where she lives. New Hampshire and some neighboring states don’t have these restrictions, but New Hampshire is too far away for me to move my mom back. Next stop: a nursing home, back with family – or New Jersey?
One NY regulation states that no staff member, not even a nurse, may give a resident medication. The resident has to be able to take that pill or liquid on his or her own. My mother never could swallow a pill. Her inability has nothing to do with Alzheimer’s. However, it is necessary to circumvent the regulation so a staff member may crush her pill and serve it in applesauce or pudding. The rationale is to prevent giving medication to some one against their will. This reasoning does not make any sense with those afflicted with Alzheimer’s and other dementias since they have lost the capability to make rational decisions. Can’t take your medication? Next stop: a nursing home, back with family – or Connecticut?
On the flip side, an assisted living medication coordinator many not fill a PRN or “when needed” prescription written by a doctor. The rationale here is that a person with Alzheimer’s or dementia does not know when a pain reliever or even a decongestant would be helpful. Aides or nurses, especially if they have cared for a resident for several months, can see or hear when a resident is in pain or has a fever and needs medication, but the regulation prohibits their using their common sense. Yes there will always be some staff members who may abuse the right to provide medication, but there are other ways of providing checks and balances to the process, rather than to outlaw it altogether.
Another regulation states that residents in these homes must be able to stand and ambulate on their own. No gentle lifts or pushing of wheelchairs by staff are allowed. If someone has become too weak to stand up without a helping hand, she’s out. Next stop: a nursing home, back with family — or New Jersey?
Still another regulation states that residents in these homes must be able to feed themselves. Finger food is fine, but no help, not even from a volunteer. Next stop: a nursing home, back with family – or Connecticut?
A resident who is “uncooperative,” perhaps because she can’t sleep or does not want to eat or take a shower or take her meds can easily, unintentionally be pushed beyond her fragile line of self-control. What happens when a resident is in pain or yelling in frustration or anger or confusion? Often it depends upon who is on duty at the time. If there is an aide present who has a solid relationship with the resident, the aide may be able to calm her. If not, and there is no one who may take responsibility to assess the situation on-site, it is off to the emergency room, and most likely, off to the emergency room alone, secured to a gurney, with nothing more than paperwork stating that the patient is “uncooperative” and her behavior is not consistent with her norm. How to avoid unnecessary traumas in the ER? You must proceed to the Next stop: a nursing home, back with family – or New Jersey?
The head of my mom’s “neighborhood” is a very compassionate, professional woman, and has gone out of her way even from home on her day off to time the ambulance pick-up so that I can meet my mom at the hospital. She has warned me that if my mom is “uncooperative” or “combative” she could be sent to a psychiatric unit.
If there is no advocate for an Alzheimer’s patient in the ER, the doctor may have to admit her, start an IV, insert a catheter for a urine sample, take blood, order x-rays and other tests to verify that there is nothing wrong. The last time I was at the ER with my mom, the very wise and young head of the room wiggled through procedures and discovered my mom had a urinary tract infection, wrote a script for antibiotics and sent her back. I was present and could assure him I was in total agreement with his approach; if not, he wouldn’t have been able to doctor as he did.
It gets worse at the hospital. When it appears that the assisted living is not able to provide for the patient’s needs – why else would it send a cranky but otherwise healthy person to the ER room — the hospital must, according to state regulations, discharge the patient to a nursing home. This almost happened to my mom on another occasion and for another reason. I was there and I was able to get that wonderful head of my mom’s neighborhood to come to the hospital to offer her assessment of my mom’s condition and to vouch that the assisted living was capable of meeting her needs. But what if I weren’t there? Or think, what if you weren’t there for your mother?
I’ve looked at nursing homes in order to be prepared if my mom really did need to move. Nursing homes provide skilled nursing. Alzheimer’s and memory loss seniors do not need skilled nursing unless they have some other medical condition. They need someone to help them transfer from their bed to their wheelchair or to eat or to toilet. Nursing homes are also very expensive – from $5000 to $8000 more a month than what one pays for assisted living – which is already expensive. Does it really cost another $5000 a month for someone to help a person into a wheel chair and wheel them down to the dining room?
I asked professionals at the nursing homes and in Alzheimer’s support organizations, how do people pay for this. And the answer was: “They don’t.” Medicaid pays for it. “What if you don’t qualify for Medicaid?” The answer: “You will soon.”
Something is out of whack here, and I’m not sure I want to try to figure it out.
Instead we will be going to Connecticut – or New Jersey.