How to deal with unruly dementia behavior

July 9, 2015 2:18 PM

We've been hosting my FIL with mild dementia in our house for the past 6 months or so, after his living situation suddenly changed. Things were OK for the most part until recently. The novelty of living in a new house (to him) has worn off and he has exhausted his interest in his normal hobbies. He has become quite bored and lonely.

He is on a waiting list to enter memory care at a local senior living home that he quite likes (he stayed there for three weeks recently and enjoyed the staff and having people around), but it could be weeks or more before a permanent room becomes available.

However, starting within the past week, he has become obsessed with driving his car, either to go to the senior living facility I mentioned or to his house (an hour drive). He actually did sneak out and made it to the senior center. They were understanding but emphasized that he is in no condition to drive. They said if it happened again, they would be forced to call Senior Protection Services.

So, as you may have already guessed, telling him that he can no longer drive did not go well...at all. He is very agitated and will not surrender his keys. We're "all out to get him". I was able to disconnect the battery of his car last night when he went to bed, and so now he is waiting for me to jump his 'dead battery' when I get home from work.

This is where I need the advice. I would like to tell him that I will not help start his car, and that the authorities have made it quite clear that he can't drive. That if he does drive and hurts or kills someone, that we can be sued and lose everything. Which is true! My wife, however, wants to defuse the situation by having me pretend to jump it and then claim that I don't know why it won't start. My thought is that this approach will only result in a short time of calm, before he demands to call a tow truck or something. I figure he will be angry either way, but will probably be more angry at first with the truth. What would you guys recommend?

Secondly, if he gets so angry that he storms out of the house and starts walking (or gets violent), what is the best way to deal with it? I can't imagine that forcibly restraining him would go over well. My idea in this case would be to call the police, but I don't know what their protocol would be and that worries me.

Thanks for any advice you can give in our difficult time.

posted by Don_K to Human Relations (22 answers total)

Response by poster: I should mention that we sent out a letter to our state's DMV requesting that he be tested for driving ability and have his license revoked if necessary, but this will take too long to help now.
posted by Don_K at 2:20 PM on July 9, 2015 [1 favorite]

We did the, this is so weird, I don't know why your car won't start, I'd better look into that ASAP ruse for YEARS with my grandmother. It feels gross and deceitful but it keeps everyone more or less happy.
posted by mchorn at 2:31 PM on July 9, 2015 [9 favorites]

You can call a garage right now from your office and let them know the short version of the story: Your FIL isn't safe to drive anymore, so last night you disconnected his battery to prevent him from going out and killing someone. Ask them if they'd be willing to take your money to tow the car to their garage and keep it there for a bit, until his driving test. Just offer them money and someone will say yes. It's a public service.

Then call your FIL at home and let him know that your jumper cables look pretty bad so you just arranged to have the car towed to a local garage to get it fixed. Later you can blame return delays on the garage: "They found something wrong with the serpentine belts. They're waiting on a part. It's a good thing it didn't die while you were out on the road."

I'm all about honesty but when someone is aggressive-demented you need to keep yourself, the person, and the rest of humanity safe. It requires white lies sometimes.
posted by juniperesque at 2:33 PM on July 9, 2015 [45 favorites]

I was a kid when this happened, so I don't know the details, but my family arranged for my grandfather's car to be "stolen," with the full knowledge and I think assistance of the police department when he became unable to drive.

Again, no idea how to do this logistically, but the cops and/or senior home people might have some ideas.
posted by ernielundquist at 2:34 PM on July 9, 2015 [3 favorites]

This is common dementia behavior. Whenever possible, do not confront. Has the DMV removed his license? You could show him the letter. I would probably stick with the car is broken, will be fixed on X day.

You can and should contact his doctor (a geriatric neuropsych if he has such) about medication to assist during this transition.

If he does go off walking, do call the police. You can even call ahead to alert them and give a description as a protective measure. If he is violent with them, he may be taken to a geriatric psych unit, which sounds awful, but in some cases it is the only way to get a person proper attention and medication to help control aggressive behavior.
posted by Riverine at 2:37 PM on July 9, 2015 [4 favorites]

The problem with using reason, logic, and honesty in these circumstances is that dementia robs people of their reason and logic. You won't be able to reliably make him understand that he needs not to drive for safety reasons; even if he "gets it" one day, he will likely be back at square one the next day. Just say "huh, I don't know why the car won't start" and then "take it to the shop" or have it get "stolen" or something.
posted by KathrynT at 2:39 PM on July 9, 2015 [16 favorites]

Does the Senior Center have a day care option? Could they work with you to create one for FIL until his room opens up? They're obviously aware of his great eagerness to be there and it's clear that no one wants him driving. Maybe they'd be willing to work with you on making this an option? Or, maybe they know of an elder day care facility that could be an option?

His doctor should also be able to contact the DMV and let them know that his license needs to be suspended for medical reasons. The local police may also know how to help you do this if the doctor can't help.

In the meantime, can your wife take him out for a coffee or slice of pie while you reconnect the battery and go park the car somewhere so that you can tell him that you tried to jump the car and then had it towed to the mechanic because it wouldn't start?
posted by quince at 2:43 PM on July 9, 2015 [3 favorites]

My mother ran into this same issue with her mother. As others have pointed out, reason and logic where not much help in this case. The only thing that worked were emotional in nature. In the end the solution that made everyone happy was permanently loaning the car to a grandchild. It was a lie. He did not need the car, but helping out a family member allowed her to part with the car on her terms rather then have it taken away.

I guess what I'm trying to say is, is there a way that things can be presented such that FIL is making the decision - even if deep down everyone knows it's kind of a put on?
posted by phil at 3:38 PM on July 9, 2015 [10 favorites]

Response by poster: Wow, great and quick responses! The unanimity is clear. I will probably go with the idea of having the car towed, while we wait for the DMV letter.

Wish me luck!
posted by Don_K at 3:40 PM on July 9, 2015 [6 favorites]

Chiming in to add that we did phil's ruse with my grandmother. She was much more amenable to giving up her car to her grandson than just not driving it.
posted by bedhead at 3:46 PM on July 9, 2015 [3 favorites]

Can you set him up with a nice xbox or PC , dual/tri screens, driving games and a wheel/pedals? There can even be a social aspect to it if he is racing against others.
posted by Sophont at 3:54 PM on July 9, 2015 [4 favorites]

It is unbelievably difficult for people to lose the ability to drive. It tears them up, it tears them down. My brother told my father that "Hey, I'm just going to pull the car around back, through the back gate; it's not going anywhere, it's going to be right here." The next morning -- early the next morning -- the car was parked back in the driveway. My father just did *not* want to let go the keys. To so many of us US citizens, cars are freedom, not to mention pleasure. We forget that it's a privilege granted, and not a right that is for all.

He was stopped at a red light, looked straight at a car coming from the left maybe 45 MPH, pulled directly in front of them. They didn't even have a beginning of a chance of not smacking into his car. A married couple, two kids, all okay, though their car was a total loss. They hit my fathers car at an angle directly were he was seated (seat belt on -- do wear your seat belts, gang), my father did not have even a scratch but oh my god was he ever sore, as was my mother, both in their early 80s.

He probably had Alzheimer's -- all of his sibs did -- but we found out after the accident that he also had a tumor in his brain, not malignant, might have been there for years, growing slowly. But the wreck jangled everything, and he was now *really* lost. He still wanted, of course, to drive. If you can believe it, he found an insurance company to put a policy on him. (Phoenix Arizona is not about to buck older people.) But we dropped the hammer. Sorry Dad -- no car.

He tanked, and fast. Everything sortof shifted into warp speed, headed downward, I'd guess he was gone in a year, slipped and fell in an assisted living place for his type of troubles, broke his hip, and you know the rest of that story. As much as I loved/love him, it was merciful, a goodness that he got out so fast.

Make a plea to the people at that assisted living place. Say please. Ask if there is anything to be done to move the calendar faster. My father began drifting outside at night, we had to hide *those* keys, too -- the whole thing was a mess.

Don't let him near that car. Tow it. Burn it to the ground. Just tell him straight up. Whatever. My sibs and I would not ever have forgive ourselves if he'd killed any of the people in that wreck he was in. This one is on you. You've got to do the deal.

Wishing you support from Austin on a sunny Thursday evening.
posted by dancestoblue at 4:32 PM on July 9, 2015 [13 favorites]

Yes, with dementia the goal is typically to defer, defer, defer, through misdirection if necessary. Being confronted can be very distressing and agitating; putting them off or redirecting them is much kinder. You can even buy software that creates fake "bank accounts" and trading accounts on the computer so they can't sign in and do stupid things with their money, but you don't have to fight with them every six hours about how they can't get to their own money! Senior homes sometimes put fake bus stops outside the home so that wanderers can be found waiting for the bus that never comes. It is often extremely distressing for seniors with dementia to be reminded of the dementia, and to be so consistently thwarted in acting out their desires and their normal life; play-acting an alternative, normal situation (like where the car won't start!) is much, much kinder. Perhaps it will feel less-gross if you remember that his desire isn't so much to drive his car specifically, but to have a normal life. Helping him do that by play-acting the broken down or stolen car is a kindness.
posted by Eyebrows McGee at 4:59 PM on July 9, 2015 [20 favorites]

We did the same with my FIL who was living with us. He was REALLY REALLY angry for a while and the anger returned anytime he returned to the thought of going anywhere which was often. He would become absolutely obsessed with returning to the DMV after they failed him and he would talk about it for literally hours and hours on end. You are getting to a place in his dementia where you need to learn how to distract. All of the above is great for the car part. You seem well and convinced that he can't be driving, so no need to drive that home.

Your sanity and your partners is going to depend on finding things that can distract him. If he likes the senior home, is there a day hab in the area you could try? There are also respite care providers who will take him out and drive him to whatever errands, or activities he would like to attend. Music, we have always found helpful and not to make the TV his baby sitter, but a John Wayne movie or Errol Flynn pic always gets his attention, at least for an hour or two.

Also, my favorite suggestion - read the 36 Hour Day. You're going to need it.

I'm totally open to chatting via memail or even on the phone if you have direct questions.
posted by Sophie1 at 6:16 PM on July 9, 2015 [3 favorites]

Just chiming in to join the chorus - one of the characteristics of dementia is that you lose insight. Confronting him with the truth will be unlikely to work, as he won't be able to take on the appropriateness of your concerns, and even if it does, it is unlikely he will continue to remember that, so you'd be set up for a series of unpleasant confrontations. It feels disrespectful to lie to him, but it's probably the path that will cause all of you the least distress.

(I love the lateral thinking of the suggestion to set up an x-box driving game, but I think it's unlikely to work.)
posted by Cheese Monster at 8:08 PM on July 9, 2015 [2 favorites]

One of the things that helped my husband feel better about "lying" to his dad was to realize that his dad was not in the same world anymore. And trying to make his dad understand how things were going in the real world made him frustrated and angry--and he didn't remember that he shouldn't do X thing half an hour later, but oh boy did he retain the anger.

It helped to view it as playing along with the world his father was in. Rather than try to force his dad to face facts from a world he had left, he found ways to describe facts to fit the world his father *thought* he was in. This is immensely kinder. Accommodating a dementia patient keeps them from accumulating that extra frustration, over and above the fear/anger/frustration of having your mind turn on you.

FWIW, dementia sufferers want to GO. They want to go home (even if they are home), they want to go out, they want to go to work... Where they are--mentally--is uncomfortable, and so they seize on the idea that they would be more comfortable someplace else. They will keep trying to go if they do not have their own car. FIL used to call everyone he knew asking for rides home. He would try to call taxis. He talked about calling the police to come take him away from this place where he was being kept against his will (the police were aware that he was suffering dementia, but precautions were taken to keep him from calling most numbers.)

He would try to leave on foot if he could not get a ride. Our Sheriff's Office has a program where they strap a locator on people with dementia in case of wandering off. A sheriff's office representative (in plain clothes; don't scare the guy who is already afraid and doesn't know why) came by--monthly? I think--to change the battery and check in. SO helpful.

It was good to know he could be found if he left, but it was still important to keep him from getting into traffic or otherwise endangering himself. So the locks were changed to double key locks. You had to have a key to open any exterior door from the inside as well as the outside AND the doors were kept locked. Of course the keys were not left in the locks, too. (It was enough in his case to keep them on a table/windowsill by the door. He never checked.)

Some of this may seem a bit much to arrange since your FIL won't be with you long term, but it may help to come up with *something* to keep him from leaving when no one is watching, for as long as he is with you. Sometimes just an extra lock on the door is enough to confound someone with dementia--a bolt a the top of the door holding the door shut, etc. Somewhere they're not accustomed to looking. Some people have had success with a dark contrasting rug in front of the door, that the dementia patient avoids as if it were a hole...

There are all sorts of ways to discourage someone obliquely without outright telling them they can't go out (or drive, or go see a deceased friend, or anything else they just can't remember that they can't do). Again, not making it a source of anger/frustration. Just deflection.

My FIL went on long walks with various people, which sometimes helped.
posted by galadriel at 10:41 PM on July 9, 2015 [22 favorites]

Thank you for your thoughtful and informative comment, galadriel -- really great. Flagged as fantastic.
posted by dancestoblue at 11:44 PM on July 9, 2015 [1 favorite]

So the locks were changed to double key locks. You had to have a key to open any exterior door from the inside as well as the outside AND the doors were kept locked. Of course the keys were not left in the locks, too. (It was enough in his case to keep them on a table/windowsill by the door. He never checked.)
posted by galadriel at 12:41 AM on July 10

Yes on the double key locks. But my father would absolutely have found the key(s) if they were not carefully hidden; as you so thoughtfully noted, he wanted *out*

I've never seen it worded as you have, it expresses exactly what my father wanted: Out.
posted by dancestoblue at 11:58 PM on July 9, 2015 [1 favorite]

If you're in the US, dialing 211 will get you in touch with people who can give you referrals to mental health support. There might be a crisis team in the area you could speak to about setting up a case manager for him while he's in the community and putting in a plan for what to do if he wanders off or becomes aggressive. A lot of areas have day programs as well, and you may be able to take him out every day to someplace with people and activities which would distract him.

They may also have resources for support groups for the two of you. Dealing with a parent who is needing to be parented is a challenge on a number of levels, and it will be hardest for your wife. Having people who are local and are going through similar things can help a lot, and they would be another source of information for local resources.

Remember that in order to take care of others, we need to be taken care of. As much as you can, step up the number of nice things you do for your wife and yourself. Try to focus on finding 1-2 things to complement each other on every day. If you meditate, or exercise, or like to go to the park, schedule time to do it. It's easy to neglect yourself and your partner when there is a crisis, but over the long term it's critical to take care of yourself and each other.
posted by Deoridhe at 1:33 AM on July 10, 2015 [2 favorites]

KCRW's Unfictional just had a podcast telling a story about just such a ruse with an elderly dad with dementia.

The relevant story starts at about 10:34 minutes in. It takes a light-ish tone, but it's funny and sad and I'm sorry your family is going through this. It is really difficult.
posted by vitabellosi at 4:35 AM on July 10, 2015 [1 favorite]

Response by poster: Thanks again for all of your ideas, thoughts, and kind words. The stories are quite enlightening. We had originally planned on selling our house and moving all of us into his house. His recent behavior made us rethink that. We started thinking that the novelty of being back in his own house would wear off rather quickly, and he would still want company of peers and to drive. After reading these comments, it appears we were correct.

I didn't mention that we are also dealing with an uncompromising, callous, and manipulative co-trustee. So, my wife is under extreme stress, between missing work, dealing with verbal abuse from her father, and trying to move forward with her sibling blocking every choice that would result in money being spent from the trust. We will most likely need to spend a large amount of our own money to have our attorney push though an emergency hearing just so we can get her father into the senior living facility that he wants to be in when a room in memory care becomes available in the next week or two. We don't want to miss this opportunity, because there aren't many rooms in that department and it would be a long while before another one became available.

The good news in all of this is that we actually have this viable option in senior living: close to home (by pure chance), highly rated, caring staff (particularly the fellow that works in memory care, who makes you believe that humanity is not doomed), and my father in law has already stayed there long enough for them to know him and for him to make some friends!

Now the waiting game begins.

Oh, here's a legal question that our lawyer and the trust lawyer don't seem to want to answer: if things do not go well with the co-trustee and a room becomes available, we have considered a desperate move of just moving him in, and giving them his account information for payment. Obviously, a big violation of the trust agreement. But, with plenty of hard evidence of the sibling's manipulative behavior and lack of cooperation, could they try to recover the spent money from us? What would the ramifications truly be? We feel that the sibling's behavior has been and is completely against the best interest of the father, but a judge can only look at how the law sees it.

It pains us to see him so bored and lonely, and we really need to make him happy.
posted by Don_K at 7:21 AM on July 10, 2015 [1 favorite]

"we have considered a desperate move of just moving him in, and giving them his account information for payment."

Oh ouch. Ah. You might put the facility in the position of being sued in civil court, or even facing criminal penalties, for receiving stolen property (money). How would the facility respond? Kick your FIL out, refuse to readmit him, sue you for the money and for damages?

Is there any way to add another trustee to reduce deadlock?

A gambit that a friend's family took when getting too much grief over the care of grandma with dementia: threatened to share not just costs but also her day-to-day care, leaving her with the intransigent family member every other month. This was about quality of care, not shared expenses, but something similar might work?

...
Gosh, I was a minor party in the care of my FIL; I'm just repeating things that worked here and there, and things that I've read worked for others too. Absolutely! every case is different--so where leaving the key out worked with my FIL, it might have to not even be in the house for others, and then again some might be deflected by the dark rug/optical "hole" on the floor. Some might break a window... it's hard to know. [*]

There are some good resources for dementia; I didn't mention any but the sheriff's office because I did not remember off the top of my head--but I know the Alzheimer's Association website has lots of information, also had some free materials you could request or download. They also had a good forum, back when I happened across it looking for an answer.

Since you look to be planning an active part in your FIL's care now and when he's in the facility, probably it would help to go through their lists of important steps to prepare (durable medical power of attorney, durable power of attorney, signed well before they will be needed {because when you realize you need it, it is too late}, and more).

You might want to also sit down with a geriatrics attorney and a geriatrics doctor. They can help you with what to expect and how to make it as easy as possible for your FIL.

It miiiiight help to bring in the co-trustee for these meetings too. Let them see just what they will be responsible for, themselves, if you bow out due to the fight over the trust and the co-trustee does not have a facility ready to care for the FIL. If they make it impossible for you to care for your FIL, you might be able to accuse the co-trustee of misuse of an elder's funds, show that the co-trustee is trying to cause elder neglect, perhaps?

...
[*] Things are *never* as simple as they should be. Around the time my FIL started trying to "go" he also microwaved something with metal and started a small fire. He wasn't home alone at the time, but if he had been, he would have been unable to get out. Also it apparently did not occur to him :( There were neighbors watching the house while he was alone, but I don't think the fire risk had occurred to anyone before that. If you have friendly neighbors can they help, for the next few weeks?
posted by galadriel at 11:50 AM on July 10, 2015 [2 favorites]