Well this past Sunday at 7:25 am my DS and I get calls from the NH that DH is enroute to a hospital ER for a seizure and that he had been given an injection of .5mg of Ativan. He has never had a seizure before but has had a couple of vasovagal(sp?) episodes. He was always placed in bed with feet elevated and within five minutes he was back to dementia normal. DS headed to the hospital and I went to NH. The NH sent him to the hospital that sent him to hospice 2 years ago. This was the only hospital in the area that we told them to never send him to. Ativan is one of three drugs (along with respiradal and depakote) that he was to never be given. Hospital info was in his file and the NH DR had removed oral Ativan from his file but left the injection as needed Ativan in. He also has a MOST form on file. The ER doctor did an ekg and agreed with DS that there was no point in running him through the ct scanner. EKG and vitals were normal. He was sent back to NH. Only gone for one hour and fifteen minutes. The EMTs that transported him said he had slept the entire time. The 3rd and 1st shift RN's stated that the power had been out since 4:00am and some patients were sundowning from walking in dark hallways and they did not have time to check DH's file to decide where or to send him. ER DR suggested that lack of bright lights when they got him up at 5:30 am may have triggered the seizure. The NH patient advocate (yeah, right) defended the RN"s decision while trying to assure me that transporting would not happen again unless there was profuse bleeding or an obvious fracture. She also agreed that his patient rights had been violated. DS, DD, SIL and myself stayed until 6:30 pm to walk the halls with him until the Ativan was out of his system. Any amount of Ativan makes him a super aggressive bully. The power came back on about 11:00AM. DH has been his usual self all week. Are all NH's incompetent or just most? Thanks for listening.
THEY JUST DON"T LISTEN.We had been warned by previous family doc not to take Vicodin if we were taking Tramadol.When DH complained of back pain(he had had a couple back surgeries in the past),the night nurse calls the dr. and he says just keep giving himVicodin.By morning he was comatose so he was sent to ER.I was sure we would lose him,I told the ER doc what they had given him and he was given an injection which slowly brought him out of the overdose,which never should have happened.A couple weeks later the same night nurse calls me saying he was in pain and she had the doc order VICODIN,he was still on tramadol, so I am screamin on phone NO.NO.NO.She thought I went ballistic, why wouldn't I.So,yes,AliM,NH's do hire incompetent staff, and I am so weary of dealing with it.THey di not even recognize an allergic reaction when DH's lips and face swelled.
AliM, not all nursing homes are incompetent. In my experience (I'm a retired physician in addition to being an AD caregiver) most nursing homes do a good job. Maybe that's because I'm in Maine - "The Way Life Should Be". My wife is in a closed memory unit. She gets excellent care. I see her almost every day, and am always amazed at how caring and patient the staff are, even with very uncooperative patients. I have never seen one of them get angry or upset at a patient or family member.
marsh, Like you, I am very pleased with the care my spouse is getting. But his situation is not typical. His is in the secure dementia unit in a state-owned veteran's home. I think the superior care that he is getting there is a direct result of the fact that it gets public support, it is subject to public scrutiny, and it has a varied patient base (not all residents are dementia or NH patients). I do not think it is representative of what is available at other facilities in our state, especially NHs.
I do not dispute your suggestion that LTC care facilities in Maine are better than elsewhere. Unfortunately, most people do not live in Maine and most are not eligible for the facility my husband lives in.
Two years ago, a for-profit "skilled nursing facility" almost killed a friend in a period of only 5 months. She walked in to the place with a cane and came out in a wheelchair, never to walk again. Every day, the NH parked her in a wheelchair in a semi-circle of other wheelchairs, all of which faced the nurses' station. The only break from staring at the nurses' station was for meals. Sitting in the wheelchair for so long left her unable to sit up on her own so she slumped in the chair. After she left the place, she had to be supported by a hard plastic brace around her torso until PT helped her to regain the ability to sit up on her own. When she went in, she was making sense, although confused about many things. But the NH doped her up with Seroquel so that she seemed semi-comatose. Because of that, she was unable to feed herself. The aides put her food dish next to her but did not even remove the cover, much less help her eat. The NH doctor then diagnosed her with late-stage dementia and "failure to thrive." During her 5-month stay, she lost more than 25 pounds and test results showed she was severely dehydrated and malnourished. After legal intervention, a friend was appointed to be her guardian. He gradually reduced the Seroquel to 0 and removed her from this hell-hole. She "woke up," stared to eat, recognized people, and resumed her former activities of listening to music and watching the political news on TV. She was thrilled to be able to vote in the November 2012 election. Of course, she still had dementia. But her "severe/late-stage" diagnosis in the NH miraculously became "moderate/mid-stage" after the Seroquel was stopped and she was removed fronm the NH.
BTW, my friend was a private-pay patient and her resources were sufficient to maintain that status for many years. Also, this is not some notorious dump. It is in an upscale suburb, is decorated to look like Monticello, and has a good reputation, at least among lay people (who might be fooled by the Palladian windows, camel-back sofas, and wing chairs). I know this place is not representative of all NHs but I think it is representative of enough of them to make me legitimately fearful. I was never one who said I would kill myself if I had to be admitted to a nursing home but after seeing what happened to my friend, I have changed my mind. I have no children and my husband will be dead by the time I need LTC. Having seen what the medical-industrial complex will do to a human being just to make a buck, I do not want to be one of their victims.
myrtle, my FIL was in the VA dementia unit in Bedford, MA. He got very good care. The patients were allowed to walk the hallways day and night if they wanted to. Nurses would take time to say hi as they walked by them or would chat if they came up to the nurses desk. Of course, my FIL no longer chatted but he would stop and they would smile, and try to connect.
My mother was cared for by my oldest sister. When she got too much she found a 'foster home' for her. The couple times she visited all seemed well - family style meals and activities. My mother went in still feeding herself although a little sloppy. Turns out they would not let her feed herself because they did not want to clean up the floor so they fed her. Did not take long for her to loose what abilities she did have. She went to a nursing home but again, she had lost all abilities so basically just sat there and had to have all done for her.
As Marsh said and others have, there are fantastic nursing homes, OK and horrible ones. But then that is true in most anything. Wish we all could only encounter the fantastic homes so being an advocate was not so important and draining.
If the power went out, did they not have emergency lighting? Schools, hospitals, almost any public facility has emergency lights that will light up but not bright which may have been part of the problem with those residents. As for the medication, that is unacceptable and could easily cost a patient their life.
Charlotte, How can you tell the fantastic ones from the horrible ones? There is little reliable information to guide people who want to distinguish between good and bad nursing homes. The best source is word of mouth but most people do not know others with direct experience of a lot of nursing homes. And some naive people are fooled by the superficial amenities of some of the for-profit NHs. And now it turns out that the Medicare "star rating" system is a farce. The New York Times just ran an article about how that rating system relies on self-reporting and is "gamed" by the NHs themselves. The whole thing is a crap shoot.
I figure that if I have no one to advocate for me, I would be offering myself as a human guinea pig. Why take the chance?
marsh, I am happy to hear that your wife is in an excellent facility. All caregivers and care managers deserve wonderful care for their loved ones. I visited my DH daily the 1st year in LTC. Now at the 3 and a half year point I visit twice a week. Other family members also visit weekly. I know of one small church run NH that does not use meds for ALZ behavior. The facility has what they call a "Soothing Room". It is a lavishly furnished room with plush furniture, soft lighting and soft music playing along with a huge aquarium. The staff says it normally takes from 5 to 15 minutes for the patient to calm down. The bad news is that it is like a fancy country club where only a few can get in.. The cost is $350.00 per day. Way beyond my means..................Charlotte, they did have emergency power for computers, oxygen and one light in each hallway. No lights in patients rooms. When they got them up at 5:30 am with extremely limited lighting I suppose it could have caused confusion for some.
My DH has been in care since May of 2013. First he was in a large for-profit NH with lovely facilities & common areas, daily choices in what to eat, and lots of live entertainment shows. However, the resident care was sloppy. CNAs were mainly in charge in the Memory Care unit (one nurse to the building and rarely seen) and they, of course, do not have the power to effect change; they just complete the day to day care as well as they can. My DH started having behavior issues and no one stepped in to address them. By the time he had an altercation with another resident (completely avoidable if they would have been paying attention), he had to go to a hospital for a geri-psych stay. We then moved him to a privately owned facility and I am so fortunate that he is living there. There is a nurse on duty in each Unit during every shift. The resident/staff ratio is very good; in my DH's "Men's Behavior Unit" the ratio is 3/1. While the food is institutional & a bit mushy, it smells great and the residents eat it all up. They are all so very caring and every staff member steps in where needed at any time and with a great attitude. I know how blessed we are and I wish all of our loved ones could have the same level of care and compassion my DH receives. I pray that if/when I need a home of some sort, it will be a privately owned facility - and that they serve wine & chocolate!
AliM, In our area, the standard charge for NH care costs $10,000-12,000 per month. That comes to $350 per day or more. It doesn't matter whether it's a country club or a dump. (The friend that I talked about in my previous post was paying $12,000, which was not unusual.)
Fiona, What do you mean by a "privately-owned" facility?
a man owns this facility outright, rather than a corporation. Therefore, he makes policy for his residents without having to answering to a corporation's bottom line. His office is right inside the facility, he is there most days. he has stated several times to me that he has an open door policy and if I ever need to discuss anything please drop in. I know he means it. I also know that I need to work with the Director of Operations and the Director of Nursing but if ever they were not responsive to my husband's needs, you can bet I'll be giving him a visit. And they all know it too.
myrtle, I live in the southeast where the cost of living is lower and income a lot lower. At the Skilled Nursing Facility where DH is the rates are $180.00 per day for a semi private bed and $240.00 per day for a private room. These are private pay rates (which I am, for now). The state pays the facility $133.00 per day for Medicaid qualified patients for a semi private bed. Medicaid will not pay for a private room in my state. I suppose Medicaid rates are set by each state according to the cost of living in their area. The facilities that accept Medicaid and private pay patients set their own private pay rates and also charge private pay patients extra for diapers, cream and lots of other supplies. The average around her is 145.00 to 160.00 per day for a semiprivate in an ALF and180.00 to 240.00 per day in a Skilled Nursing Facility. Private Facilities that do not accept Medicaid charge an average around 320.00 per day. Thank goodness I have LTC insurance that pays part of my DH's expenses or I would already be in the poor house. 70 thousand per year, including room and board and all the extras to pay for, is a big amount in my area where the average income is about 37K per year. The SNF where my DH is also privately owned by a husband and wife team.
We are private pay at a little over 10,000 amonth. IRA is going quickly.Since DH had a pretty good IRA, I am allowed to keep 115,000,but if I have to spend it to see that he gets quality care ,I will.I am very frugal and can live on very little. My biggest expense is my nine rescued cats.I have very good neighbors, they say they won't let me starve.
Thanks, Fiona. I think the family-run facilities are long gone from our area. As far as I know, all the NHs here are owned by corporations, except for the ones owned by religious and charitable organizations. I think most (but not all) of the corporate facilities are "for-profit."
As for religious organizations, the local Jewish community operates a NH and an ALF, as do two different orders of Catholic nuns. (These facilities are not restricted to members of these religions.) Also, there is a NH run by the Masons about 30 miles away. And then there is the state-owned verterans' home that my husband is in. There are only two of these in the state and I consider it a miracle that one of them is in our area.
AliM, That IS a big difference in price. Even so, $70,000 years is a lot of money. I'm glad you have the LTC insurance. Medicaid does not cover private rooms here, either.
yhouniey, In our state there is a provision in the law that allows you to put some money (maybe even as much as $100,000) in a trust to be used for the patient's benefit after they have gone on Medicaid. This can be used for "extras" for them - as you say, to pay for quality care that Medicaid does not include - hours for an extra aide or care manager, etc. That way, the community spouse does not have to spend her/his $115,000 on these things. I admire your care of rescued cats and I worry that you wil run out of money to take care of them and you, too.
My wife's ALF costs are in the NH range. But they have psychiatrist, psychologist, neurologist and neuropsych on staff and my insurance covers their charges. This has prevented her from being sent to the psych ward of a hospital twice. The ALF seems to be owned by a religious organization.
When we run out of money (I am getting worried about that, I'm working on her retirement plans to recognize my POA so I can start drawing down on them, she is 55 and care is beyond my salary) she will be transferred to their NH. The NH rooms are almost the same as the ALF. Most of the rooms are singles and some are doubles (each resident's area is separated from the other by a wall and they share a bathroom). They will help apply for Medicaid if that time ever comes and they indicated that whether she goes into a single or double is based on the room available. But I don't think this is a typical operation.
paul, no, your wife is not in a typical facility and I know you've worked hard to make sure she's in the right facility for her. My experience has been when DH was in a NH for rehab, he had to be in a double if Medicare was paying for it. Singles in our area are for private pay patients only; or until their $$ runs out and they are on Medicaid. Once on Medicaid, it's a double.
You and she are very lucky to have found such a wonderful facility.
I am so sorry you have been dealing with this horrible disease in your 40-50's but at least (small consolation, I know) you have world class facilities near you. Blessings to you both.