The title of this thread tells you what I'm in the midst of doing. I've been working on this since last week, and have been given some good advice I'd like to share. My husband isn't the most challenging AD patient that exists; but his doctor says he's in the upper third for that. I'm sure anyone looking at locations for placement wants to find the best place they can, but when a patient has an established pattern of acting out or needing frequent medication adjustments, it becomes even more critical. So here's what I've been told so far:
--Look for a "medical model"; a place that has a good Director of Medicine and Psychiatric Consultant. (Word of mouth is usually good to evaluate that, if you can get it.) Many facilities in this area are serviced by a company that sends in different doctors and nurse practitioners to treat residents; I was told that it's better to have the same doctors treating residents consistently, to ensure continuity of care.
--Nonprofit vs. for profit organizations: Nonprofits tend to put their money into services for the patients; for profit facilities tend to have more "bells and whistles", i.e. fancier decor, etc. My husband is late stage 6, things like decor don't matter to him at all.
--This from my husband's neuro: the nurse that will take care of the patient is key. Look for someone you feel comfortable with and can communicate easily with. The doctors are only as good as the input they get from the nurse.
--Do they refer patients to a geripsych unit for medication adjustment, and how often? Or do they just let behaviors escalate until a crisis happens?
I've found that the marketing people at these facilities are very upbeat and will tell you that your LO will do just fine there, but I think you need to dig deeper to see if they have what it takes! If anyone has any other criteria that they have used successfully, I'd like to know.
My daughter is a dementia specialist with a large dementia ALF chain-Clare Bridge and she suggests: should try to meet primary nurse. Not necessarily the director of nursing-but the one that will make the decisions about calling the doc about meds, etc
I'm sure if you go back a about a year you can find quite a discussion on Clare Bridge,you may also find the CEO's name an address if you should decide to use their survices.just sayin.....
I did as you said and googled that site. As the epidemic of Alz. really mushrooms, we are going to see many dementia-only facilities spring up. Investors are going to line up to build these places. Very frightening to think level of care will probably deteriorate and I am sure this will happen. Usually the small towns offer the best care because "everyone knows everyone else." Life will become increasingly difficult for caregivers.
Until there is more competition and involvement from government or insurance companies, we will be at the mercy of their own people. From what I read, they only accept LTCI, VA or private pay.
Personally I wouldn't put too much stock in the primary nurse. At least where Lynn is, each shift has 4- 5 different primary nurses to cover all the hours. In 2 1/2 years there have been 3 new directors of nursing. I can't keep track of how many nurses and aides have come and gone. Recently my favorite nurse left for a better job, and today is the last day for our favorite aide. From my own personal experience I would say having a doctor you can communicate to yourself is more vital.
Thank you Marilyn for the information and what issues to consider. My DH has recently become more challenging with increasing aggression, retlessnes and agitation. For the very first time this week he left the house in the middle of the night. Fortunately I found him in our neighborhood, but I have no idea how long he was gone. We now have additional security and the project lifesaver braclet on him. I can ell by the changes he's going to need a med adjustment and I have to begin seriously looking for a place for him.
Yipes. I was wondering about the nurse thing too Nikki. Seems to me there's bound to be enough transition that if you pick a place for a nurse, you're apt to be disappointed when he/she leaves next month.
My best hope, if/when this need arises, is that the frequent and random visits of me, my mother, my sister, several brothers and sisters-in-law, friends, and 4 children will keep the staff aware that neglect will not go unnoticed. I realize I am fortunate to have such a network.
In responce to one of the care facility's previously mentioned,they had no nurse on site but they did have a number to call if needed,also in the state of Mich ALF's are not governed by the same laws as nursing homes,as a matter of fact after many complaints to the state its seems that can an do whatever they please,there many be exceptions but the one I had trouble with rated zero from me.Three aides watched LO climb over 8' stockade fence an did nothing to stop her,finally called police after she left the grounds,I was assured by director an her assistant when I wrote check for over $5,000.00 that they handled cases like this everyday an assured me of LO's safety.She was there four days as I remember, before they said they couldn't control her an she was sent to hospital,for their wonderful care they chose to keep about $3,000.00.Be very careful before choosing ALF an have everything in writting,,they'll tell you anything you want to hear to get the money,this out fit wouldn't even give me a copy of the contract I sighned
I am considering who the doctors are (both the Medical Director--usually a geriatrician at the better ALF's here) and the Psychiatric Consultant as well. I'm not interested in those centers who use the company who rotates staff for those positions. But I will check on the nurse too; another question I was told to ask is about the rate of staff turnover. I must have checked out at least a dozen places by phone (some I have previously visited in person); have an appointment Friday for the one that sounds the best.
Emily--yes, it's great you have so many people to keep tabs. Neglect isn't the only issue that concerns me, I want to feel comfortable that my husband will be safe. I don't think we've discussed this subject much here at Joan's, but at some facilities patients can be endangered by poor management of other aggressive residents. So having a staff that stays on top of things is vital.
Marilyn, you are very lucky indeed to have the resources available to you that are within close proximity. We live in rural NJ (yes, I too thought that was an oxymoron) and quallified resources are scarce. We have resources in NYC and Philly both of which are 1.5 hours away and due to my disabilities it makes navigating both cities difficult. In our area of NJ there are no facilities that have the models you describe, at least none that I have investigated within 45 miles of where we live. How would I go about finding the type of facilities/staff you are referencing? I am willing to have them be several miles away but even though I have hired a Geriatric Care Manager she has not advised what we should look for and where we might find it.
LFL--Correct me if I'm wrong, but isn't that what you're paying a Geriatric Care Manager for? Of course I realize--just like anything else--there are people who are more knowledgeable than others. My suggestion would be to contact the Alzheimer's Association Chapter who serves your area to see if they can help you (they should have a list of places with dementia units). Also, search for a social worker to advise you (for free, I might add). I got information from the director of the adult day program my husband attends as well as the owner of the home health agency I use; sometimes your Area Office on Aging office has useful information; also, nonprofit community services organizations may have social workers who can help. In this area, there seems to be an "Alzheimer's community" i.e., professionals who work in the various capacities I've listed above who all sort of know each other--see if you can find something similar to tap into. And of course, see if your husband's doctor(s) can give any input.
I realize that we may have more resources here than in other places. I was told that the place I'm seeing Friday has many patients from out of state, whose prior facilities couldn't handle them. I understand why you wouldn't want to place your husband so far away--even without health issues of my own, I want to be close by so I can keep tabs on things closely.
Emily you are indeed very fortunate that you have so many people willing to help you advocate for your husband. What a blessing! Lynn has four children but only one of them visits on a regular basis, and by regular I mean once every couple of months. I am Lynn's only advocate, but trust me they DO know I will not tolerate any slack in any area.
Marylin, Lynn is in a skilled nursing home, not an ALF, so I can’t really help you much, but I can share what this facility does. They have several doctors who look after the care of the patients, unlike some places these doctors come in at least once a week. The geriatric neuro-psychiatrist is amazing and the reason I didn't move Lynn to another facility when I had such a problem with the head doctor, the one on the board. He was an ass and I fired him.
I did ask about turnover, but they do not have to tell you. They did share that they have some people who have been there over 20 years! That is true, but from what I am seeing, it is the younger aides and nurses who do not stay as long. I think they are always on the lookout for a better job. Who can blame them?
The facility Lynn is in has a lock down dementia floor. The staff has always been fantastic, very loving and caring. I did look for a nonprofit facility for the same reasons you mention and also because Lynn only has Medicaid.
I have only had three problems in two and a half years, once when the doctor I fired did not listen to me when I said I felt Lynn had pneumonia (which he did and was left untreated until I threatened to call and ambulance and sue the nursing home and that doctor)
The second was earlier this spring when Lynn was having so many falls. I called an emergency care plan meeting and we implemented many changes that took care of the problems.
The third is going on now, they put on a huge addition for rehabilitation and ALF, they have hired a lot of new staff. Lynn’s regular aide was put in the new building and his new aides were not seeing to his care the way I felt they should. His face wasn’t being washed, he wasn’t shaved for days, food was in his whiskers, he has double vision and they were not putting his glasses on ….. Things of that nature. I did speak to the head nurse, but the quality of care was still lacking. So I had to put in a call to the Ombudsman, things have already improved.
This is a wonderful facility and yet I have still run into problems. I have yet to speak to one spouse who hasn’t had one gripe or another at some point. So to my thinking, it isn’t so much how wonderful the facility or staff is, it is more how fierce you are in advocating for your loved one.
Nikki, thanks for your input. I agree with you on the need for advocating for your loved one. However, let me explain to you why I am so concerned with the caliber of the facility. My husband's Dad had EOAD, he was institutionalized, and he died in his 50's as a result of injuries sustained in a fight with another patient. My husband is 66, ambulatory, physically strong. I don't want him to have the opportunity to hurt another resident; nor do I want them to hurt him. I can advocate for him till the cows come home, but I won't be there 24/7. So I'll need to feel a comfort level, that the staff is the best choice to keep him safe. I realize that even in the "best" place, there will still be issues that come up, it is just the nature of the beast. Maybe what you should specialize in "after" is coaching caregivers on patient advocacy!
Hi Marilyn, I do remember reading awhile back about your FIL, so tragic! We have never had to deal with anything of this nature. There has never been any sort of fight there with any of the patients. The worst I have seen is the cat fights the little old ladies get in, but that is with their mouths lol.
I would hope that patients would be evaluated and their medicines adjusted to prevent these behaviors before placement. I think it must be different in an ALF than a nursing home, as most of the men I see are rather frail and most, if not all, couldn't stand long enough to even have a fight.
Your husband is so young, I am sorry you are facing this :(
I am a ferocious advocate! Not just for Lynn either, I have "adopted" many of the residents who have been abandoned by their families... just breaks my heart *sigh
hi marilyn, i hope you have success with the chosing of a facility. i know you do your homework. my first inclination would be to have a choice where i had direct contact with staff dr, and his handson nursing staff. its critical to have a good working relationship from day one. these people will be his lifeline to his wellbeing and yours. i would also be intent to know how they will supervise medicines and when/how often updates to meds will be carried out. with your DH being in facility for medicine adjustments its imperative they stay on top of how he is adjusting and mood swings. while we know there is always the possibility of aggressive patients from time to time, we surely dont want to hear our spouse is the aggressor. ask about liability for any damages if something should happen. maybe consulting with the insurance about a possible umbrella policy to cover any seriousness that 'couuld' but probably wont happen. also about how the facility itself would handle an aggressive patient that maybe hurts someone. i would cover all the bases prior to signing the dotted line and remember to sign as POA for your spouse not your name for anything you sign. i would ask for the contract for a day prior to signing and take it to my atty to ask his opinion just to see if they have hidden agendas in languages used in the contracts that could leave one hanging if things dont turn out. taking a bit of time could save alot of headaches later. good luck. divvi
Thanks, Divvi, for reminding me of the legal issues. I have been focusing on the medical ones primarily, but the legal side is important too. Because I want to do a respite or trial stay first, that will give me time to consult an attorney with the contract, on the insurance, etc. So many factors to consider.
Interesting--I brought up the liability issue with a very good marketing person on the phone this a.m. and she referred me to the facility Director on that, saying she had never been asked those questions before.