I had the EMTs take my wife (69, early onset Alzheimer’s dementia) to the ER due to violent behaviors (trying to leave the house, hitting, threatening, attempting to exit the car while moving, etc.). She also has problems with hallucinations, not eating properly, and cooperating with basic hygiene.
The ER doctor and social worker decided that placement in a geriatric psych facility would be best. She was transported by ambulance the 1 hour to the psych facility the next day. I can only visit her two days each week for 30 minutes each day. Today, (Sunday 2-6-22) is her 12th day at the facility. They put my wife on Risperdal to control her behaviors (she hit an aide and threatened a nurse). She is at 1 mg and has been taking Risperdal for 7 days.
I was asked by the social workers at the geriatric psych hospital my ideas for future care for my wife. I told them I thought it would be best if she were placed in a memory unit in a long-term care facility. The social worker thought memory care in assisted living might be best, but I told them I was concerned we would run out of money quickly and she would have to move to a facility that accepted Medicaid. I was also told that patients have stayed at this psych hospital for as long as two months with they waited for placement. They said her wandering makes placement very challenging.
At this point, her behaviors at the geriatric facility have improved, but she is still having problems with wandering, not eating (all she will eat is ice cream and mac and cheese – mostly ice cream), and some hygiene issues. She’s diabetic, by the way. She is still telling wild stories about people, places, and events that have never happened, and she can’t follow a normal conversation.
Last Friday (2/4), I received a call from the social worker letting me know that she located a facility (1 hour from home) that would accept my wife and possibly a second facility (1/2 hour from home) and that they were looking to release her this Tuesday or Wednesday (2/8 or 2/9). I was very surprised at this news. I need time to visit these facilities and get questions answered by the staff before I commit to having my wife move there. I won’t be able to do that until Monday or Tuesday at the earliest. I am also in the process of gathering information for applying for Medicaid. I need more time for that was well.
I need to ask the social worker on Monday if the facilities they want to move her to are unacceptable to me, can she stay at the psych hospital until something better opens up. Or if I don’t accept this placement, my only option will be to bring her home. I suddenly feel under a lot of pressure to make a difficult decision very quickly based on limited information.
I drove by the facility that has an opening today and from the outside, it looks unappealing (like they just took a one-story house and made it into a nursing home). Based on the outside, it’s hard to believe it has an advertised 5 star rating. I will try to make an appointment for a visit, but right now I don’t think I want my wife going there. I’m sure they need to free up a bed at the psych hospital and that is where the pressure is coming from.
Also, the reality of putting my wife in a facility and that she won’t be coming home is hitting me hard. I am questioning the decision and feeling guilty about it. Yet, deep down I know the reality of having her home would be exhausting, frustrating and potentially dangerous to her and me. I don’t think home health would work because that wouldn’t help with wandering and possible violence. It also wouldn't with the eating problems, hallucinations, etc. But then, maybe I am wrong about that.
Sorry for going on and on, but if any of you have any suggestions, I would appreciate it. Also, when I visit potential facilities, what should I look for? Do I just go to facilities in the area and ask if they have any openings in memory care? I’m really in the dark on all of this. Thank you.
Creque
Tell them you need until Tuesday because you want to look at these places.
My mom had the same issues with behaviors and wandering. Initially she was in a memory care facility, a national chain. They kicked her out because of the behaviors.
Mom was on hospice at the time and they recommended a care home, a residential structure which had been remodeled for the purpose of becoming a care home. The outside wasn't great at all. Inside it was modern, an open concept. One of the best advantages was that the care ratio was much better. Her room was quite small but workable with her own bathroom. And the facility fee was much lower than the memory care national chain. Every resident in this home had been kicked out of their previous memory care.
You do need to move fast when these vacancies are available. They do fill up fast. Get up early on Monday, call the facilities today, and get the visits in Monday morning and make up your mind. Five star ratings are hard to come by. And it isn't about what a place looks like, it is about the care their residents receive.
Have you seen an elder law attorney? You do not need to impoverish yourself. One half of all assets are yours. If you own your home Medicaid will not take it.
Thanks for your response, it is very helpful. I do have an elder law attorney who is working with me on prepping for the Medicaid application. Checking out the care ratio is a good suggestion.
Just because she is placed doesn't mean she can never move.
Please do not judge a facility by it's appearance. Some of the best care is to be had in facilities that focus on residents care and not landscaping out front.
The interior should be clean and without vile odors but, it doesn't need to have the latest innovations to be a good facility.
What you are facing is probably one of, if not the hardest thing you have ever had to do. Facing this truth can help you get through it.
Getting her placed will help in a couple of ways. It will give you time to get everything set up to protect you as the community spouse and it will help everyone see how your wife functions in a facility and that will help get her placed in a facility that is best able to meet her needs.
Breathe!
Refuse to expose your wife to the "unsafe discharge" route-- bringing her home is demonstrably unsafe to her. Say firmly "I cannot bring my wife home; it would be an unsafe discharge".
Also learn the term "Medicaid Pending".
I got that this was some sort of magical language for "If you take mom home, you are screwed".
Hospitals can't do "unsafe discharges" and so they HAVE to get your LO into a bed.
From home? You are waiting on waiting lists that might be years long.
Get her into an available facility. Facility to facility transfers are easier than home to facility.
You need to see an elder lawyer. Medicaid allows splitting of marital assets. Your wife's split going towards her care. When her split is almost gone, then Medicaid is applied for. You remain in the home with a car. Depending on what you need to live on will determine how your monthly SS and any pension will be split. Just giving u the basics here.
If you have no assets, then seeing a Medicaid caseworker to help with the application maybe enough. But you will be a Community Spouse and that needs to be taken in consideration. You cannot be made impoverished.
Does the SW realize that placing your wife depends on being able to get Medicaid for her care? I would ask that you be given more time to check out the two places. You could allow her to be placed in the nearest one for now. You can always transfer her.
Thanks so much for the Medicaid explanation. I hope The geriatric psych facility gives me more time to visit facilities. I am going through an attorney to help with the Medicaid application. He seems to know what he is doing. I am getting together all the documentation (a lot of records)! Thank you again.
Visit each of them..pick the one that seems more warm and friendly.
Any place she goes to will be a difficult adjustment for everyone involved.
Please don't let 'perfect' be the enemy of the 'good enough' right now. Moving again is possible.
The hospital has a legitimate need to transfer patients to the most appropriate care setting once they are 'stable enough'. Sadly your wife's illness will continue to cause destruction to her brain and resultant outbursts.
I am so sorry that you and your wife and your family are in this awful mess...brain diseases destroy so much of the person that you love. Get some support for you, too.
I looked up the Medicare website for ratings of nursing homes. Medicare sends inspectors to look at certain criteria for quality so it’s stronger than consumer opinion. I searched facilities in the area that had four or five star ratings overall. Resident care had to be four or five star. I needed to have a larger number of facilities to look at since my brother is on Medicaid so I also looked at three star facilities with a three to five star resident care ratings. I gave my list of facilities for the social worker to contact.
Without going into details he ended up in two places that were busy earning their one star ratings. I had looked only at places that were close to my niece, but after getting him into hospice I widened my search area. I gave the hospice social worker my list and the next day I received a call from one that has a five star resident care rating and that accepted his Medicaid. They have taken amazing care of him and there is no doubt that this place and hospice have helped him live almost 9 months since placement—something we didn’t expect. They genuinely care about him.
Medicaid can take a month or more to kick in from the day you apply depending on the state. Nursing home billing offices have access to to what’s happening with Medicaid. I think I found that Medicaid backdated to the date I applied. Ask about that. I would also consider contacting an elder law attorney.
When all this began my goal has always been for him to be safe and comfortable, if not happy. It’s a massive jolt to suddenly realizing your wife requires help that you can’t provide. She is no longer the person she once was and that’s a big loss. Finding a place where she’s safe will be the kindest and most loving act you can do.
Now... in reality you know in your heart and the back of your mind that under no circumstances can you bring your wife back to your home. It will be dangerous to you ( and if she injures you and you require hospitalization.... who will take care of and advocate for her?) and possibly dangerous for others (trying to leave a moving car....not good for other drivers). She has arrived at a stage where she simply needs more care than you can provide at home so you are looking for a place that can do that for you.
She needs placement so that you can be a loving husband not a tired caregiver ducking punches. I am happy to hear that you are working with an eldercare attorney on the Medicaid application; that is the best way to go. Make sure the social worker at the psych hospital realizes that your wife will be on Medicaid (talk on the phone and send the confirmation of the conversation in an email or letter to the social worker with a copy for yourself and the attorney ---- written audit trail if ever needed). What makes your wife's placement a little more difficult is the wandering. That may be one of the reasons the social worker only came up with two facilities. Your wife really needs a secured "locked" unit. As has been said .... don't judge the book by it's cover. One of the counties in NJ ran a nursing home with excellent staff to patient ratios.... but the building looked like a prison from the outside. Inside .. more activities that you could imagine, decorations for holidays you didn't know existed, a secured outside garden for wandering dementia residents to enjoy the sunshine and hear the birds. Once people were in.... very few familes wanted to leave but... it sure looked like a prison from the outside... cover was bad but the book was great. You may also have to compromise with what your idea of a perfect facility would be. The pretty ones with the chanteliers and deep carpet cost a small fortune (someone has to pay for those chanteliers!). You need a place that is secure and where the workers are trained to deal with your wife's behavior and where her meds are carefully monitored (be prepared for her to have to make a trip back to the psych hospital to have meds adjusted periodically. It's not a problem but it happens. In NJ medicaid beds are held for the resident for 10 days)
As you know, administration of Medicaid can vary from state to state but in NJ we have a number of nursing homes that have secured units so residents can't wander out of the building. Medicaid is approved back to the date of application (that's why you want the current social worker to know about the Mediciad application). You are the community spouse so assets would be split; your home does not have to be sold and Medicare is not out to improvish you.
Hang in there.... you are going to get through this and all of us on this forum got your back. Peace on this difficult journey.
Just because the outside of a building doesn't look appealing, you must check out the team of people that run it day to day.
Ask to have lunch there and check out the food, talk to people around you like the residents, talk to staff, visit more than once to get a good feel.
They can't force you to move your wife before you have had a chance to look at your options, also the facilities check out the person wanting to move-in as well wanting to know their history, meds, current lifestyle and behavior.
Facilities can only take so many Medicare residents compared to private pay patients..... so sometimes it is a balancing act, will they take your loved one and do you like the place that will take them?
It is a process so I am sure you will have the time to check out a few facilities, you could even make same day appointments and get the feel for them quickly.
My best advice is make sure that you feel comfortable where you are placing her, it is really important for your own peace of mind and to not feel guilty.
So basically you are looking for both of you.
Good Luck and best wishes....
It could take a bit longer in the psych hospital for the medication to stabilize her. This time can benefit her, and the staff can better find an appropriate
placement.
Is your family on board to help you with looking for a place?
Good that you have an attorney for help with the Medicaid application.
Even though this can be done by a lay person, this takes a huge burden off the family-allowing you to visit, be family.
Take some deep breaths. You have kept her at home as long as possible.
Thanks for your response. Yes, my family is on board to help locate a place. The wandering issue is making placement difficult. Yesterday(Monday) I was told by the social worker that as soon as they find an opening, my wife will be discharged to that facility within 24 hours. The only other option is to take her home.
I'm thinking about doing just that. Bring her home and see how she does. See how the Risperdal works at home. If her aggressive behaviors are better and we have locks on the doors so she can't get out, maybe that would buy us some time to find a better/closer care center and also time to apply for medicaid. But what happens if she starts acting crazy again? What do I do? Have her sent back to Kobacher? It's a real dilemma that has caused me to question lots of things including what right do I have to consign my wife to spend the remainder of her days in a nursing home. It like choosing between the devil and the deep blue sea.
Thanks again.
creque