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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

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Don't be too picky right now. Get your wife set up on Medicaid and ask the social worker if the place they recommend accepts Medicaid. It's best to have her go to a facility near you so that you can visit more easily. If it's a 5 star facility, it can't be terrible. It takes skilled personnel to handle people who manifest dementia with violent behavior, wandering, etc. A long-term memory care facility would be best. The environment at these facilities is never what you'd want to live in as a fully functioning human being, but people with dementia are living in their own worlds. For her, it may not be so bad. The envirnment is safe and controlled. My mother was in a memory care unit starting with early dementia (and wandering) and now she's got advanced dementia. Just yesterday she had to move to skilled nursing in a different unit of the facility. She's on Hospice care and it was Hospice that recommended the move. As I was packing up the room many of the staff told me that they will miss her. There was a lot of love there that I didn't even know about. She also got love from the other residents, who are very forgiving. It was very touching.
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Don't take her home. Her issues are much more than you can safely handle at home.

Let them place her where ever they find a place that will take her. Keep looking for another place, that takes Medicaid. You don't have to be approved yet to do that. My MIL went in to a nursing home, spent down her meager funds and the nursing home helped us apply for Medicaid. Now that she's approved, they will receive their money for the months that her application was pending.

When she gets placed, work closely with the doctor who sees the residents there on finding a med that will help control her wandering. Actually, I don't even know if there is such a thing!

I know this is a sad time for you but you're going to have to deal with this. Once the dust settles, you will have time to think about it and process it, etc.

Don't be in a rush to sell the house. OTOH, housing prices are pretty high so it is kind of a good time to sell. Would you buy again or go into senior housing apartment of some sort (which is what I would do)?

Best of luck!
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Here is a link and phone number for a national eldercare website/resource:

https://eldercare.acl.gov/Public/Index.aspx
1-800-677-1116.

Per their website it is "a public service of the U.S. Administration on Aging connecting you to services for older adults and their families."

When I contacted my local Area Agency on Aging regarding a similar situation with my mom, they were very helpful and informative.
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Here is a link and phone number for a national eldercare website/resource:

https://eldercare.acl.gov/Public/Index.aspx
1-800-677-1116.

Per their website it is "a public service of the U.S. Administration on Aging connecting you to services for older adults and their families."

When I contacted my local Area Agency on Aging regarding a similar situation with my mom, they were very helpful and informative.
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The reality of putting a spouse into a facility is very hard. That's why it hits you hard. If you know it's right, trust yourself to make the decision for her and move forward for her best. You may have a little time to shop facilities. Hold that as a gift. Don't dawdle, time isn't on your side. Place her well, cry and forgive yourself.
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Please don't bring her home. She is at the point where she does require 24 hour care - something you are not able to do. Also, professionals who are trained to deal with these situations. And if you do bring her home, and she does wander, self harms herself or someone else, you will be back at square 1 plus you could be hurt and you will be exhausted.

I agree with everyone here, don't judge a facility based on the outside. Check the Medicare ratings and yes, even yelp online ratings (with the understanding there will always be 1 or 2 who are not happy with a facility). If one facility doesn't work out perhaps you can transfer her to another.
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Most stays at psych hospitals are two weeks. That's how much time Medicare will pay for psych hospital. If you still need to qualify for Medicaid (pays for placement) then placement will take time. You will need to liquidate all of her/your assets to qualify for Medicaid. That means you can't have more than $2000 in assets to qualify. By the way, Medicaid will only pay between 1,000 to 1,200 a month.
Average monthly ALF/Memory Care rent ranges from $3900 - $10,000. Most facilities accept Long Term Care insurance or Life insurance policy with cash out option. I can recommend an ALF that has a wandering device (like a sophisticated Apple Watch for dementia patients).

Also you can appeal any discharge from any hospital.

Hope this helps.
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gladimhere Feb 2022
Misinformation!
That is not correct. OP is entitled to his fair share of assets and maybe more depending on their financial situation. Medicaid will not impoverish Creque. He is the community spouse.

This link will provide information on what Medicaid will pay. It is not limited as Ponce states.

https://www.medicaidplanningassistance.org/medicaid-and-nursing-homes/

Note for Married Couples – While a single nursing home Medicaid beneficiary must give Medicaid almost all their income for nursing home care, this is not always the case for married couples in which only one spouse needs Medicaid-funded nursing home care. There are Spousal Protection Laws, which protect income and assets for the non-applicant spouse to prevent spousal impoverishment. The Minimum Monthly Maintenance Needs Allowance permits an applicant spouse to transfer a portion, or in some cases, all of their monthly income to their non-applicant spouse to ensure they have sufficient income on which to live. In 2022, this can be up to $3,435 / month. There is also a Community Spouse Resource Allowance that protects a larger amount of a couple’s joint assets for a non-applicant spouse. In 2022, this can as much as $137,400.
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Oh what a wonderful day that would be, if after spending time in a NH or Behavioral Unit your wife would improve enough to come home. You can visit her. You can have her re-evaluated and diagnosed by the best geriatric neurologist, have her medications tweaked at every turn.

She may be on a medication that has not helped her, but instead put her in a rapid downward spiral.

You can right now, while she is still in the behavioral unit, get a second opinion by a private geriatric-psychiatrist, who can evaluate her entire medication regimen.

You can do everything you can with what is available to you. Even if it is not covered by her insurance. (second opinion).

Please follow Barb's advice.

I am not suggesting you slip into denial about your wife's diagnosis. It could help if you know that you tried everything. Then still, do not give up.
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You sound like you are just overwhelmed with all of this situation. Please ask social work to help you find a counsellor to talk all these issues over with. You may be able to "look" at the facilities online and do some teleconference calls with administrators. Ask if they take Medicaid clients. A "yes" would make the facility a better option if your wife needs Medicaid.
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creque: The facility that you drove past may be deceiving from the outside, e.g. 'you can't judge a book by its cover.' You should not bring your wife home. I am sorry that you're having such difficulty with your wife and I was saddened by your last thread, whereby you also stated that she tried to exit a moving vehicle. Prayers, dear creque.
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Mr. Creque, a very smart and compassionate discharge planner/RN once said to me "If she's in a bed, leave her in a bed. Transfers from bed to bed are easy".

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.
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gladimhere Feb 2022
Creque, follow Barb's advice. If you take her home you will be starting all over again. Remember UNSAFE DISCHARGE!
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Congratulations on getting help for your wife!
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.
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creque Feb 2022
Sendhelp,

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
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Here is a link to a post that some of us put together regarding questions to ask of MC facilities before placement. It may be helpful to you.

https://www.agingcare.com/questions/questions-to-ask-memory-care-facilities-before-placing-a-lo-470196.htm
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creque Feb 2022
cxmoody,

Thanks for the link. Great questions to ask the MC!
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Take a big exhalation while you relax a moment while giving yourself a pat on the back for being a great spouse!
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.
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MaryKathleen Feb 2022
You said it all.
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I had to find a nursing home for my brother following surgeries for glioblastoma. It became very apparent he could no longer live by himself and neither his 23 year old daughter or I, living 1600 miles away, could provide that care. I also decided that quality of life is more important than quantity of life so I placed him in hospice care.

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.
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creque Feb 2022
Thanks for your post. Your information on nursing home ratings and Medicaid application is very helpful.
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Never judge a book by its cover.
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....
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creque Feb 2022
I am feeling like there isn't much time. they seem to want my wife out of the psych facility real soon. They are claiming that since my wife has improved it is going to be difficult to get insurance to pay for her stay in the hospital. So, they have said that as soon as they find an open room for my wife anywhere within driving distance (whether we like it or not), she will be discharged within 24 hours to that facility. Either that or we take her home. That's it. I don't think there is time to go around comparing facilities.
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I agree with Isthisrealyreal. Do not judge the inside of a facility and the ability of the staff to do a wonderful job based on what the outside looks like.
Also use the Medicare website as a tool. They have ratings of facilities and often notations as to what noncompliance matters were.
You can always have her transferred at a later date if a closer, better place has a bed available.
I also have to ask if the Alzheimer's is an accurate diagnosis or are they using that as a "blanket diagnosis"? With hallucinations and violence it is important to get an accurate, complete diagnosis. (rule out Lewy Body Dementia) (or could it be Frontal Temporal?))
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Gladimhere has a good point -your wife's care needs do mean that many places won't accept her. The geriatric care unit that is taking care of her now knows what places do manage behavioral issues well....and they found 2 choices.
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.
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creque Feb 2022
Thank you for your kind response. Neither of the 2 choices worked out. One wouldn't accept a patient that wanders and the other ended up without an opening. We will keep trying.
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Transfer of assets to a spouse does not involve a Medicaid look back. You should have the assistance of an elder attorney for this. When my father went into a nursing home, all his assets were transferred to my stepmother and then Medicaid was applied and approved for my father.
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Riley2166 Feb 2022
Are you sure? I never heard of a loopback where assets were transferred to a spouse and no loopback. This is really odd. Why has no one ever heard of this before? Was it a genuine mistake or a deliberate act?
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Sometimes we need to take what is available and then find the best solution.

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!
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creque Feb 2022
thanks for your suggestions. Very helpful.
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Memory Care is just a step up from an Assisted Living. Its usually private pay. There really isn't Memory care, as such, in Longterm care. Not where I live anyway. With your wifes problems even a Memory care would probably not take her. They need to safeguard their other residents.

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.
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creque Feb 2022
JoAnn
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.
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Glad said it all; she's been down your exact tragic path, Mr. Creque, albeit with twisted siblings trying to sabotage her every move.

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".
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gladimhere Feb 2022
😊😊 thanks, Barb. 💖💖
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I see you have posted before in this forum. It is very helpful to us, so then it is to you, if you post responses and followups to our responses and your questions.

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.
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creque Feb 2022
Gladimhere,
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.
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