What is the next step?

Cheryl123 - You have to outsmart dementia and not show all your cards all the time. This is no longer about what dad wants because he will not get better. Dementia gets worse. This is about keeping him safe. Staying home is NOT SAFE.

Dementia patients lose their ability to make rational decisions, so no, he's not going to volunteer to go to the doctor even if he's in pain. He's not going to volunteer to move into a nursing home or dementia care residence. It doesn't matter what he wants. You have to do the responsible thing as his daughter and as a reasonable adult aware of the situation.

If you want to take your little kid to the doctor for shots, you don't just come out and tell them "Hey, get in the car now. We're going for shots! They're going to stick a needle in your little arm and it's probably going to hurt." Sometimes the less detail shared, the more cooperation you can get.

Dad HAS to be seen by a doctor, so you HAVE to do whatever it takes to get him there. You don't have to lie, but you also don't have to paint the whole vivid picture in 12 colors for him to reject and react to. You don't need his permission to do the right thing.

Ideally, you won't sit around waiting for another fall. YOU need to call a NEUROLOIST and make him an apointment. They need to look into why he is having such drastic weakness and can't walk or talk. These are red flags you need to attend to urgently. It could be neurological or something else. This is not optional or something you can put off to the future. DO IT NOW.

In the meantime, if he falls, or if he has an episode where he can't make sense, call 911, meet them at the hospital and request a cognitive eval by the ER team if they weren't already going to do one. I should hope that this would be procedure when they get an older person who has fallen. Tell them he has been confused to the point of not being able to speak, falls repeatedly, and you have safety concerns for him, since his only full time caregiver also has dementia and is not mentally or physically able to assume the role. Tell them he won't see his regular doctor over this and can't return home because it isn't safe, and he won't cooperate with bed rest. These are all words that will mean something in the ER and ought to trip some triggers. Do not sugar coat it. Do not whitewash it so it doesn't sound so bad. Tell them you are afraid for his safety at home. DO NOT volunteer yourself or other family to be caretakers. Make it 100% crystal clear he absolutely can in no way return home.

Just because nothing is broken does NOT mean he should go home. That's ridiculous and I would not accept that from any ER doctor. Care varies from place to place, but at any of our hospitals if they got a confused delusional old person in for falling, that patient would not be walking or wheeled out the doors to just go back home with zero follow up.

The ER should definitely perform some brain scans and have a neurology consult. There will be a crisis social worker at the ER you can talk to - request that they meet with you if they don't find you first. This person is a lynch-pin in getting going down the right direction.

The social worker and a hospital discharge planning team can help find a rehab location for your dad. This will buy you a couple weeks of time to make other permanent arrangements for him. Hopefully he can go to a facility that has rehab (also called Transitional Care Units) and can just reclassify him as a resident after rehab ends, instead of making him move to another facility for admission. He might have to move into a different room, probably semi-private. This is what happened with my mom.

That trip to the hospital can make a huge difference and open doors for you, but you have to know there are doors there in the first place!

In-home care can work, at least through moderate dementia. But under the circumstances, namely that Mom wants Dad in a care center, I'm not sure that would be the best option here.

I am not sure that Dad would be suitable for assisted living. If he can't walk, needs a hospital bed, often is not coherent, I wonder if he would be best served in a nursing home? Visit some of each and discuss his needs and their services with each. Since he cannot wander and assuming his behavior is not problematic, he probably will not need Memory Care.

Perhaps with Dad cared for elsewhere and Mom with mild dementia she might get by on her own with some in-home care for a while. Realize, though, that dementia gets worse, and that generally persons with dementia cannot live alone past the very early stage. If she is physically well she might qualify for assisted living at that point.

Having one parent in a care center -- let alone two in the future -- is going to be expensive. What is your parents' financial situation? How long would they be able to pay for this kind of care? Most people in this situation would eventually need to apply for Medicaid.

Getting each parent to name a POA for finances and for medical decisions will be a huge help along the way. It still does not give you the authority to place them in a care center against their will (for example) but it does facilitate acting on their behalf.

Consulting an attorney specializing in Elder Law would be very helpful at this point. This will help you avoid mistakes that would cause trouble with a Medicaid application and also expose you to options for handling their care.

Something you can consider is the next time he falls, have your brother call 911 instead of helping him back to bed. Your father will probably tell the EMTs that he wants to get back in bed, but have him try to encourage them to take him to the ER to make sure everything is okay. Then have your mother refuse to take him back home because there is no one there who can care for him. There are several points that this can fail to work, but it is the only possibility I can think of unless someone has legal guardianship.

Something else you can do is contact your local state agency for elder affairs at the Dept of Human Services. Tell them the situation and ask if they can do a needs assessment. If you get a good social worker, he/she may be able to help a lot.

Good luck. Situations like this do work out, but we always hope it is in a good way.

It does NOT change my answer.
My mother could fake it with anybody who didn't know how to ferret out cognitive decline. Answering your name and what year it is is NOT a cognitive evaluation. There are several out there - a mini mental or a SLUMP are two. You can NOT tapdance your way through these.

My mother is now in the severe stage of cognitive decline and can tell you her name, what grade my kids are in, and who is married to some of my husband's aunts. She still requires 24/7 supervision in a locked memory care unit.

You absolutely can NOT expect a dementia patient to be rational. The rational part of the brain is affected little by little until that capability is gone. Loss of reason looks like a person becoming grouchy, resistant, entrenched, and difficult. Loss of reason does not look like a catatonic drooling person in curled up in a chair, like TV would have us think.

If it were up to my mother, she insists she would be just fine thank you, alone in her house out in the country, eating spoiled food, taking prescriptions that expired 20 years ago, bathing in water that smells like rotten eggs.

You have to make sure the right doctors are looking at him. People educated in geriatric care and neurology of the elderly. Your run of the mill vanilla GP or family practice MD isn't going to ask the right questions or see past the surface (based on my experiences). My mother went for 15+ years with the wrong care because the stupid country GP she had didn't recognize her symptoms as dementia and gave her bad advice that probably has cost her years of good days.

Get him to a neurologist and start getting answers. This will disrupt the status quo, and everybody needs to be prepared.

sandwich, you bet I will be coming back, and often, to get advice. This is only the beginning of a long journey.

joannes, love your avatar...your pop is so cute. I am learning that communicating differently is key. I'm glad to know the "either this or that method" of letting them choose is effective. I'm going to remember that. I wish we could do the same thing you did with the attorney who drew up your trust. My parents' was done so long ago, I don't even think the attorney is still around but could try to find out.

Today I called an elder law atty who blew me off with some stupid response, so now will have to find another one. We have home aides coming out tomorrow for bath and hygiene stuff, and a geriatric case manager who is going to do an assesment and report. I hope she will be a good resource. I didn't have time to really shop around. You've gotta start somewhere, and whether it be right or wrong, just taking action makes me feel better.

It sounds like most people have generally had good experiences with assisted living/nursing home/whatever else. (I'm still learning the terminology and the difference between all these places!) That's really good to know. We'd like to keep mom and poppy at home if we could, but I guess there will come a time when it would probably make more sense to move them into a place.
Thank you thank you thank you all!

Who has POA for finances and Healthcare? Have you toured local assisted living facilities? If your parents both have dementia, you want to make sure that it's the sort of place that is set up for the continuing care of dementia patients.

Your father really needs to see his doctor to get the ball rolling on this, so if he won't go, that's a problem. One of the best ways to make the transition to a care facility is from a hospitalization. If your doctor certifies that you need rehab, the hospital assists in finding a bed and Medicare generally pays for the first 20 days entirely.

I am not understanding the statement that with a POA you still cannot force a person to do anything? I have the POA on both of my parents. My Dad was refusing to make decisions that would keep him safe, and we had to have 2 of his MDs declare that he was incompetent to make his own decisions re: money and health. With Mom, she cannot handle paying bills and spending money, and is currently still home alone but with a diagnosis of early Altzheimer's . Once these brain diseases are diagnosed, it IS a matter of safety re: making their own choices so one does need MDs to make that statement about competency. If you must call EMTs too many times because Dad gets out of bed and falls, they will insist on taking him to ED. From ED, he may get admitted for a work up or sent somewhere else for a mental status eval, and then either MDs there or a judge will deem that he cannot return home. If you do not have a placement place for him, then it will be ordered. The main problem with them making the decision is that your dad would go to where ever had a bed, which is generally not the top of the line place in town, but a place on the other end of the spectrum. In my Dad's case, when he was taken out of the home for a mental status eval, we were in the process of looking for a memory care unit and fortunately, one of the places we had toured, had a bed so we got to choose. Unless there is unlimited money, you should plan on finding a place that takes Medicaid residents, because once he is eligible, if they do not, he will have to move again. Right now, I am working on trying to get my Mom to see that it's about time for her to consider AL, with Dad in the same place, but in MemoryCare....so they could be under the same roof and she could visit him whenever without having to drive. And if they were here, in my town, I could see them more often. I am only child left and my parents live 5 hours away. I am 70 yrs old and driving back and forth on a five hour trip a couple times a month for 4-5 days each time to take care of needs for both is really starting to become difficult for me and my own health and safety! You have to always be planning way past your nose....and making decisions based on what keeps both parents SAFE....no necessarily what they both want it to be if what they want is NOT safe for them. So POA first, then assess for competency...then assume control of their safety...whatever that entails. Elder care attorney, doctor, elder case manager can all help. Otherwise, you will have to have authorities take Dad to an ED and get hospital to help with placement. It's a difficult time but you have to be focused on the issue of safety for both of them.

sandwich, I'm not sure about this, because my sister was there at the time of the ER visit, but I believe she said he was answering questions correctly for the most part, like he knew what day it was, etc., so maybe that's why they didn't keep him? Because he wasn't really confused and delusional when he went to ER.
I want to make sure you guys know that he really is pretty lucid MOST of the time afa knowing what's going on around him, but when it is about his autonomy or personal safety, he gets really resistant and that's when he starts not sounding rational.
So just checking to see if that makes a difference in your response, because I want to share this information with my siblings but I want to make sure we're on the same page.

sandwich, thank you for the further explanation. I am going to forward this to the rest of the family so we can be more informed. At least now I know some things to tell/ask his primary so we can know what our options are and where we go from here. Honestly, we were so unprepared for this sudden turn of events that we're just kind of in survival mode right now, so I really appreciate the guidance.

We asked for a geriatric consult and a psychiatric consult a couple of years back when mom was hospitalized with high blood pressure. They were the most informative doctor conversations we've ever had.