My dad walks...not wanders, walks. Any advice?

Dementia diagnosis comes with more than memory loss and not finding your way home. As it progresses they get fears, or hallucinations, invasive thoughts, aggression etc. that comes out of nowhere with no warning.
One day to the next you never know what disconnect will occur. I
After dad walked off the curb in a split second, into oncoming traffic, I realized his dementia has progressed. He has no fear.
So, four years ago when he first came to live with us, I trusted him enough to leave the room to throw a load in the wash or use the restroom as I did when my child was five years old. Now, no way! He is as unpredictable as a one year old first learning to walk. He is never left unattended. I would not let my children walk the neighborhood alone. Safety is the issue here.
Remember, once a man, twice a child.

I didn't think they "just met up with him", thought they "came to the door", which, though, now makes me wonder how did they know which door to come to, if the neighbor didn't know, and if they did, then why did they call? the police got involved with my dad when he was coming home from having driven himself to church for the evening service, got to his road to turn in - a left turn - and mistook the street light for the headlights of an oncoming car; which, thankfully, he at least didn't turn in front of, like his neighbor up the road did - but instead just would never turn, backing traffic up, not sure exactly what happened but seemingly he finally decided to go on up to the next road - past the car? and then turned, then turned again - his road was a cut-through road, just like that what, so he could come in from the other way, but then he seemingly didn't, went on down to the main road, made a left turn, and then either apparently a right one or possibly pulled off before, not sure if police were behind or possibly had been for some time, possibly why didn't make his turn, though, thinking nowhere to actually pull off, but then thought about the church with its big parking lot, but his met early but their may not have so may have still been full, so not sure exactly, but thinking probably trying to find somewhere to pull off, but believe wound up at his bank with police then pulling in behind him, with him then telling him his version of what was going on and I believe them telling him what had really been going on and telling him to "just"? not drive out at night anymore, so he quit going to evening service; believe they still ran two police to a car so one of them, I think, drove him home, not just they followed him, with the other one following, but they didn't call anybody else at that point, even under those circumstances, so would you say he was exhibiting "moderate cognitive loss due to aging?" they drove him home; I believe somebody in that line had called them, because believe they knew the situation, don't think they just happened to have come behind him, because don't think they knew where he lived and that he didn't turn on his road like - what - they thought he should have? he couldn't go to town? of course maybe they might wonder where he'd been coming from out of town, which - though would they know - he normally had no reason to be? though there was a restaurant down that way he used to go to - or could it have been him pulling into the bank on a Sunday night? or course, there was an ATM there, not that he had an ATM card, but they wouldn't know that, would they? of course did he pull up to it, or just pull in the parking lot? no, I think they were called, like, in this case, though, they weren't just called - they were called and reported for "wandering", now, what made them think he was "wandering" and not just "walking" - we had a similar situation in our town with an "elderly"; I put it in quotes, because scary, he wasn't much older than me, if as old, but he wasn't from here; he'd just come from India to help his son and dil with taking care of his grandson while they worked, but...now this is the part I'm somewhat confused about because apparently assuming they hadn't gone back to work yet, or at least I hope not, because I hope he wasn't leaving the child home by himself and I don't think he was since nothing said about it but he was out walking the neighborhood and was reported, but said he was going up to people's garages and looking in, which I could understand; however, there was some question about that, so what exactly was the situation here? was there more to it than what was said? like in this case, the neighborhood, in spite of that one couple living there, was definitely not a mixed-race place - sorry

like in this situation, was he doing anything actually illegal? was he even a danger to himself, or is that even what their concern was, or were they, or at least saying they felt he was a threat to them? is it possible the police were just trying to protect themselves, like turned out to be the big issue in this local case?

DD you said "I am really disappointed that so many can't get that there is a difference between a person who has always walked and can't reliably find their way home, and someone who wanders because they have Alzheimers disease."

Could you explain what that difference is? For example, how would a police officer decide which is which and get APS involved?

I take it that when APS met up with your dad, he was exhibiting some of his moderate cognitive loss due to aging (dementia). If he had seemed perfectly normal they would have had no reason to bring him home, right? If someone reported me "wandering" around my neighborhood and the police or APS came, they wouldn't think that was dangerous just because I'm an old lady, would they? So what made them think your dad shouldn't be out alone?

It is not against the law for elderly people to be out walking on their own. The problem only arises when they appear to be a danger to themselves. Why did the people who responded to the report of your dad think he might be at risk?

DD, does your dad have a GPS device or a tracking device for you? to know where he is? my mom fell and broke her hip as well, but 4 mos.? I went and stayed with her for 6 wks. but I don't really understand; I mean, I can understand him not wanting to have 24 hr. help in the house but if not doing so meant her not being there - and he was there by himself? I'm surprised he wouldn't then consent; actually I'm somewhat surprised your mom consent to stay with you without him; not sure my mom would have; I'm trying to think if she ever did, when she did come stay with me later, pretty sure he always came and when he'd want to go home, pretty sure she'd insist on going to, of course not entirely sure he was driving the trip himself, think I was, she sure wasn't; they'd never been separated much, either, in their 62 yrs. and while we were dealing with her dad had lost his specialist for his condition and with his PA handling his case, she was monitoring him much more closely than his doc ever had so called with some very specific instructions regarding his meds that he couldn't deal with himself so I had to take care of that as well as mom on top of her having just gotten out of the hospital with the hip and him staying with her as well there with him unknowingly, we think, anyway, don't think he deliberately intended to put her away, signing papers for her to be placed, we think, possibly from the stress of going through that with her especially since we'd already been dealing with an eye issue with her, leading to him falling at the pharmacy/grocery store and messing his head all up, bleeding all over, while they were already down here being evacuees from an ice storm where they'd ended up going to a shelter because he wouldn't go anywhere else so was practically forced to leave home where they had no power and/or heat, and we couldn't get to them or even contact them, all after mom having just been told they couldn't do anything for her eye there, but having just found out they could here so had been able to get her into the eye doc while they were here but it had all been very stressful for dad and it only got worse from there with him being willing to do surgery and mom insisting on it, while I think dad would have been at that point to have everything stopped, but it wasn't his sight, but hers, although turned out, but that's a whole other issue, but then again, might be something maybe to think about - I just did - how's your dad's sight?

Point of fact, this is not true: "And there really aren't "treatable" dementias"...

Here is a list from the Alzheimer Society of Canada:

Common causes of reversible dementias:

Depression
Medication (side effects, drug interactions, drug overdose
Alcohol abuse
Drug abuse
Dietary, vitamin and mineral deficiencies (A, C, B-12 and folate)
Traumas (due to falls, concussions or contusions to the head)
Hormonal dysfunction (thyroid problems)
Metabolic disorders (dehydration, kidney failure, COPD)
Infections
Heart disease
Brain disease (tumours)
Environmental toxins

Please see your doctor if you are concerned about memory loss or any other symptoms of these conditions.

Yes, dementia is a symptom, not a disease. And there really aren't "treatable" dementias, although there are lots of things a person can do to slow the process considerably, such as exercise, controlling general health factors such as hypertension, diet, neutraceuticals etc. There is no evidence that the medications delay progression more than a few months. Two years ago, my dad was driving, shopping, cooking, gardening, walking with, and taking care of my mom, who has small vessel disease dementia due to hypertension. When my mom tripped and broke her hip, she had to be out of the house for 4 months, as she needed 24 hour care and my dad wouldn't consent to 24 hour caregivers in their house. He was sure he could take care of her, even in her condition. they have just been independent like that. So she was at my house while she recouped enough to get around and just need daytime care. They hadn't been separated for more than 6 weeks total in 65 years. It was an incredibly stressful period, where all the family attention was focused on getting mom well, and dad just lost it. Stress causes brain inflammation and brain inflammation causes eventually dementia. During that time while she was gone, he voluntarily gave up driving, and quit doing many of the things he had always done. When she returned home, having caregivers take over his other chores shopping and cooking and cleaning was also very stressful and I am sure contributed to his current state of dementia. They both seem to be at pretty much a steady state right now, although I don't really know what the 14 hour having someone looking over your shoulder every second caregiving experience is going to result in. I personally couldn't stand that kind of attention!

I'm very sad that you can't recognize that if dad can't navigate via his own GPS device and get home, then he needs more oversight than is currently being provided for him.

Read Atul Gawande On Being Mortal. You clearly are trying to keep dad happy-- an admirable goal. Just understand that it may not line up with keeping him safe as well.

Many of us here say " My parent could never be happy with....." and then they end up in that situation and thrive. Something to think about.

"Now he has moderate cognitive loss due to aging (dementia) and cannot remember how to get home."

It sounds like you think this is normal aging and not a disease process? Not being able to find his way home in a familiar neighborhood is not normal aging. Don't be afraid of having a neuro exam. If it is Alzheimer's-type dementia, there are medications that can delay the progression of symptoms and allow him to keep walking for as long as possible. Walking is a wonderful exercise for dementia patients.

Your Dad has "moderate dementia" but "doesn't have Alzheimer's or LBD." What type of dementia does he have? Has he had a neuro workup to rule out all treatable diseases that cause dementia? Dementia is a symptom, not a disease.

It is better to go by the thought "if you see something say something" ON THE RARE EVENT THAT YOU MAY SAVE SOMEONE'S LIFE. Case in point-recently I witnessed something VERY alarming-an elderly woman crossing a 6-lane highway, AT NIGHT, NOT ON A CROSSWALK, ON A CANE. I called 9-1-1 immediately. A woman had recently been struck and killed close to this area where I saw the woman!

and my mom doesn't need 24/7 care. She needs help with dressing and bathing and preparing meals.

looking back, I haven't responded to some caring people who asked. The person who called has seen my dad walk by probably every day for the last two years. He lives on the next block. I went by to ask him not to call again, and explain my dad's situation and he lives in a house with a No Solicitors sign on the door, an alarm company posted and two signs saying you are being video surveilled. He was a little off when I spoke to him and slammed the door on me three times. I couldn't really get to the point where I could ask him not to call on my dad because we have safeguards in place.

Thank you for your suggestions about organized activities. My dad just isn't the going with the group kind of guy. He has always been independent. Backpacked across the Sierras by himself at 42. For the rest, I am worried about a country where people think that cats should be kept indoors 24/7 and elderly people too. Anybody out there remember what it feels like to have sun on your face and a breeze on your skin? My dad does and he raised me like that also. You all assume that I don't know what my dad can and cannot do. My brothers and I take regular walks with him. He is very careful about streets. He is more observant than we are, both in terms of being cautious and in seeing beauty. If he is put in a home where he can't walk he will just die. I am really disappointed that so many can't get that there is a difference between a person who has always walked and can't reliably find their way home, and someone who wanders because they have Alzheimers disease. My dad has neither Alzheimers nor Lewy body dementia. I am a health care provider actively involved in brain injury rehabilitation and I know a "bit" about brains and ADLs. My brothers and I all agree that he is at no more risk walking with not one, but two gps devices, and having caregivers come get him at 30 minutes, than he is getting into a car and riding along. People get in car accidents all the time. We don't protect ourselves from those car accidents by not getting in our cars. There is risk for everyone stepping outside the door. You have different experiences and it makes me sad for what you have had to go through. But why don't we all "get what we want" until we cannot tell the difference, if we have worked hard, been frugal and made our wishes clear? I thought perhaps I would get some sort of legal thoughts on it the subject. What I have found out is why the "authorities" can do what they do. It is because the populace in this country has not come up with humane solutions as they have in other countries for our elderly. What I am hearing is that a safe life in jail is preferable to a free life with reasonable risks. We aren't going to allow that. He has human rights, if not legal rights. Might let you know when I figure it out. Thank you for your thoughts.
Decriminalize Dementia

Jeanne, this man has been walking the same route and distance for 27 yrs.

debdaughter, when I'm walking in my own neighborhood, perhaps a dozen people would recognize me. More would say, "I've seen her before. I think she must live around here." I wear an ID bracelet, in case of an accident.

I know as many people as my small town cousin does, but they are scattered over a 7-county area. It isn't realistic to assume someone will know a person who wanders some distance from his immediate neighbors.

countrymouse, did the person who called not know him?

Caregiver is in the bathroom with Mom. Dad decides to go for walk. Out he goes. Not because he is uncooperative, but because his memory is faulty. Even if he understands and agrees with the plan to wait for companions, that doesn't necessarily keep him home.

Caregiver comes out of bathroom, gets Mom settled, and realizes Dad is not home. Now what? She calls police to pick him up? She leaves Mom alone and goes after him herself? Taking care of someone with physical needs and keeping an eye on someone with cognition problems is challenging to say the least, and most likely not in her job description.

If his walking companion is scheduled for 1:30, and Dad wants to go out at 11:15, how about this: "Oh, Joe is coming at 1:30 to go out with you. He will be sooooo disappointed if you're not here. How about you help entertain Mom for a while"--or help fix lunch, or vacuum the living room.

It doesn't sound as if Dad is uncooperative at this point, and maybe he even understands the concerns of the community and will agree to scheduled times with companions.
The future may bring more needs and changes, of course.
Maybe Mom will soon be able to go out in a wheel chair, and she (and her care-giver if necessary) can go with him to help with directions.

Another thought...could a LifeAlert or something like that work also? It could be a literal lifesaver if he falls, has chest pain, etc.

He should have a walking partner.

I'm very sympathetic to your parents' wish to stay in their own home. Many people feel that way. To make that possible may require more in-home help. What can your parents afford? Can family supplement that by taking some shifts of being with them?

What is your mother's prognosis? Is she expected to recover from her hip surgery and no longer need a caregiver herself? Presumably then they could get by with one caregiver, for Dad.

Dad has "moderate cognitive loss due to aging (dementia)." Sometimes Mild Cognitive Impairment does not get worse. But dementia always does, and MCI often transitions into dementia. I think it would be a good idea to discuss your father's prognosis with his doctor, so you can be realistic as you plan ahead.

I'd comply with what APS instructed. I get where the caretakers are coming from. With your mom needing care, what happens if your dad just walks out the door. Does the caretaker go off to supervise dad or stay behind to assist your mom, who's recovering from a broken hip? And like others have said, what happens if dad forgets about his walking buddy and just takes off walking alone? Your post says that neighbors report that he s walking all the time. I'd find out if that is true and discuss it with his doctor to see if he's overly anxious. Sometimes, incessant movement is a symptom of dementia.

I love the idea of walking companions. But if the walk is scheduled for 1:30 and Dad decides to go for a walk at 11:15, what is going to stop him from wandering on his own?

In my local news there is a story every week about a senior who went for their usual walk and is missing. This week there are two such stories.

We had a family member who walked just to the end of the block every day, yup, she got 'lost', even on the walk she had done for a decade. Luckily someone stopped when they say her looking agitated and she was only able to remember her daughters first name and occupation. Sally was a school teacher and a call to all the local schools found her and she left work to get her mother.

Tracking devices do not stop a person from wandering into traffic, construction, a water course (a huge issue where I live, lakes, rivers, streams and ocean all close by).

Your father needs a walking companion, either provided by the care agency, or by a family, friend or community member. You do not want your father in the news.

If your parents have a faith community, perhaps volunteers to walk with dad could be found there. I know that I'd be pleased to do it 2 or 3 times a week, and would gladly organize a group of volunteers.
Perhaps check with your local Area on Aging. They usually have exercise programs and volunteers to help other elderly folks. They might love to get a walking program going.

We have a Memory Care facility in our neighborhood which (unfortunate planning) is right on one of the busiest streets in the city. The "able bodied" folks there are frustrated with being stuck indoors. I will admit that they are very much in the minority--most patients completely bedbound.

There's one gent who routinely slipped out whenever there's a group of people that leave. There is a "doorbell" that rings pretty loudly when the door is open--but staff ignore it when a group is there...I've watched this man just slip in amongst the "group" and pow! he's gone. I grabbed a staff member and said "You've got a walker!" and they go retrieve him. HOWEVER...for every time I have caught him (3) I wonder how many times he wandered aimlessly for hours? He was quickly moved to a more secure place, I've heard.

Grandpa also 'wandered' when his dementia got really bad. All the houses on his street were the exact same floor plan, he'd choose one and walk in--sweet neighbors returned him home. By that point, Grandma had to put him in a NH, she simply couldn't keep him safe. He was pretty non verbal and she just couldn't keep 24/7 track of him (in 1979--so not a lot available, help wise!).

A walking buddy or five would be great. No one person would be exhausted by the chore and it's great exercise. APS can be very scary to deal with-they're not always really gentle. Funny, you can't usually get them to even listen to you....

I expect through an abundance of caution on the part of a public-spirited member of the community, who thought "if in doubt, call" and called. The response from APS could have gone better, alas; but all the same doing that is better than the public being so afraid of interfering that they helplessly stand there and watch some poor old soul wander under a bus.

why was he reported in the first place?

D... when our parents first exhibit signs of dementia , but are mostly competent, it's hard to separate what they can and cannot do; so I understand you are sort of feeling the need for hanging back. There are a lot of great suggestions here I would also throw out to you that my mom volunteered at the local hospital for a long time and all the other volunteers were seniors so if you come up with any dead ends in the other recommendations you could approach the volunteer office at local hospitals or organizations just to see if you could post a help wanted situation.. My mom had to stop volunteering because she was getting lost in the hospital ... And her volunteer job was to transport patients from one side of the hospital to the other... but at that point, she still was okay to perform her other daily activities... and the other volunteers would plan coffee meetups so that she didn't feel cut off and she was still allowed to go to any Hospital volunteer events. I realize dramatically different than your dad walking, but maybe another source of contacts. best of luck

The risk will become worse if your father starts to lose his grip on where it is and isn't safe to walk, is the trouble.

I like the idea of enlisting neighbours or finding him a walking group. The exercise is brilliant for him, and it would be such a pity for him to lose it.

Or, does he always go out at the roughly the same time? Would it be hugely expensive to hire a "walking caregiver" or companion for just those couple of hours?