New here. DW is having issues.

AzAstro

Hi everyone. I joined some time ago but haven't looked around much or posted at all. I'm posting now because my DW had an incident a couple weeks ago, a story you've no doubt heard before but is new to me. She was diagnosed with ES about 18 months ago, along with Parkinson's. Our silver anniversary is this Wednesday, 10/2.

I took my car in to the shop for an oil change and asked her to bring the truck to pick me up. We had planned on going on an errand while the car was being serviced. I thought she'd be right behind me. I soon discovered I'd left my phone at home. (This will figure in later.) I waited at the shop for a while, wondering how long she'd take to do "her chores", (eat, feed the cats and dogs and the bird). After about 40 minutes, I noticed the car was in being serviced and no DW. After an hour, I saw them drive the car out and still no DW. I used the shop's phone to call her, but it went right to voicemail. I thought, maybe she hasn't turned it on yet, or left the house. I took the car home, hoping she'd be there or her phone was just turned off. Got home, no DW, no phone, no truck.

I waited another half hour or so and went looking for her. Back to the shop, around the grocery store etc. No sign of her. Went home and looked online for how to submit a Silver Alert. It's now 3 hours later, and she's been to the shop many times before. Silver alert requires someone to contact local, county and then state authorities, so i called the local police. They put me in touch with the county Sheriff and the search began.

The sheriff and city PD kept me informed of license reader hits for another couple hours. Seems she was driving up and down one road, about a block south of the shop, just back and forth. Finally, they got a hit on her driving toward home. They caught up with her and escorted her home, but she'd been lost for nearly 5 hours.

When she pulled up, she said she was "Fine", but I wasn't. I stayed calm while the search was on, but after she made it home, my heart sank. Though I put up a strong front, the implications hit me pretty hard. We talked about adding some "rules" to her driving after, but not with much of the gravity of it. Or the fear.

I had a conversation with our PCP, who says she shouldn't drive any more. This isn't really possible. We live in a rural area, 12 miles from the nearest store of any kind, 17 miles to a real grocery store. I'm still working , 40 miles away, during the day with one of the vehicles. I plan to speak with a different neurologist because I don't trust the one who made the diagnosis. His staff helps her with the answers to the cognitive test she takes each visit, and he seems to think she's doing fine. I see her slide back every day.

I know that some hard choices are to be made going forward, but I'm not really equipped to address them at the moment. So, here we are. Any thoughts , suggestions or just positive messages would be great.

Thanks for listening.

WIGO23

Really sorry this happened. You must have gone through so many difficult thoughts as to what happened while she was missing.

I know the following is hard to hear but I offer it in caring, compassion for what you are facing.

As to her continuing to drive, you have to ask “what if she gets in an accident and injures herself or others?” What if she gets so lost she ends up driving into a parked car or building or in a body of water?

Finally, if there are medical records indicating her diminished capacity, it is my understanding you could face civil or (worse) liabilities if she injures someone —even if the accident was not strictly her fault.

I hope you can find a solution no matter how hard it is. It sounds like the officer is right—she should not be driving any longer.

SDianeL

So sorry about your wife’s diagnosis and sorry you went through the scare. A book that will help is “The 36 Hour Day” which was recommended by a nurse. I agree that you should get a new Neurologist. They should not be helping her during the test. I agree that she should no longer be driving. She will be in great danger. With her diagnosis on record if she has an accident, even if it’s not her fault, you could be sued and lose everything. I also don’t think she should be left alone. She could start a fire and wouldn’t know what to do. (A nurse confirmed that with me about my husband). I don’t mean to alarm you, but although each person is different and progression varies, this terrible disease can progress quickly. You need a plan now. Please don’t wait any longer. Get your legal affairs in order. Get a DPOA and Medical POA. Start looking into memory care facilities. I did get a DPOA right away and am glad I did because 6 months later my DH could no longer read & understand documents or sign his name. I didn’t listen when people said to make other plans. I thought I had time. He was diagnosed in 2021 and I had to place him in memory care in January. Please keep us posted. This is the place for info and support.

Dio

So sorry you have to be here but you're at the right place. Read as many previous posts as you can cuz there's a wealth of experience and knowledge here. Just search on a particular question or key word(s). Learn all you can about dementia, not just Alzheimer's.

She may not necessarily have to stop driving immediately, but if she gets lost again, think of the consequences. IMHO, if she gets lost she can be found. It's the decisive response requiring judgment in case of unforeseen road incidents that is of concern. You're at the beginning where many of us have been. Take a deep breath. One step at a time. Good to see another neurologist for 2nd opinion.

JDancer

You must stop her driving. Is running an errand on her own more important than her safety and the safety of others? Disable the car, hire help, call Ubers, or make sure she stays home when you're at work. Is she safe at home alone? I know how overwhelming it is, but safety should be your first concern. I'm sorry you have to deal with this, I know its hard. My 65 year old spouse has shown signs of dementia for 6 years and is now in stage 6. He rarely leaves the house and I care for him 24/7

M1

welcome to the forum, you have come to a good place for advice and support.

I also live in a rural area, 13 miles to the nearest grocery store and 30 miles to the city where my partner is now in memory care. I understand how dependent rural life is on vehicular transportation.

However much it’s going to disrupt your life, the other posters are right. She is not safe to drive, period, end of story. If her doctor has put it in the medical record that she should not be driving, you could in fact be sued for everything you have—and that’s beyond the grief you would feel if she hurt herself or someone else.

So it sounds like you are at a huge crossroads that includes your being able to continue to work and whether you can live in your current circumstances. Again, I am so, so very sorry, but in the long run it will be better to face the music than to put your head in the sand. This is a “hair on fire” situation and you are fortunate there was a safe outcome. A second neurology opinion is not going to change that.

Iris L.

A PWD went missing from a museum while her DH was in the restroom. She was seen on surveillance cameras walking down the street. Many people searched for her. Her body was found miles away. The primary concern for PWDs is safety. In addition to their diminished mental capacity, they have anosognosia and are unaware of just how impaired they are. Thus, they will not stop and ask for directions or other help. People who are up to no good readily glom onto an older adult who appears to be confused. In the home, especially in the country, there are all sorts of areas for injury where a normal adult would avoid or know what to do. Suppose she cut herself making a sandwich? A diagnosis of dementia is a life-changing diagnosis. There are a lot of steps to be taken and changes to be made. Everything will be hard. But the members are here to help, guide and support.

As far as the staff helping her with the memory tests, frankly, I'm less concerned with that. Those tests are screening tests, meant to point the way to further evaluation. You already know that your DW is impaired. It's more important how the PWD functions at home. Read about the stages of AD. Read about instrumental ADLs. Read a lot of threads.

Iris

Rosanne77

https://alzconnected.org/discussion/70774/new-here-dw-is-having-issues

An almost identical thing happened to me and my DH. I was waiting for him to pick me up while I left my car to be inspected and get the oil changed. We literally live 5 min from the garage. 20 minutes went by and he never showed up. I walked up to the main street, where he would need to turn in, and he drove past me at least 6 times. Even with me waving at him he didn't stop. I finally started walking towards home and somehow he recognized me and pulled over. I was so upset and he tried to play it down. I did talk him into seeing his neurologist ASAP. That was approximately 2.5 years ago. In August i placed him in Memory Care and now they have told me he needs higher level. Things can change very quickly, please don't wait to get help for your wife and get your affairs in order. Looking back there were so many signs that we blamed on anything but Alzheimers/Dementia. Medication issues, chronic pain, stress. I ended up retiring early to try to care for him at home. I wish you well, but I think no longer driving should be the #1 thing you need to address today. Maybe in home aides could help. I did that for awhile. They can transport your wife anywhere and keep her safe while you work. Good luck.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

She was diagnosed with ES about 18 months ago, along with Parkinson's. Our silver anniversary is this Wednesday, 10/2.

Congratulations on your upcoming anniversary. Given that it's 25 years and you are still working, is this a situation where your wife has Early Onset (changes noted before age 65)? Often, EO dementias progress more rapidly than in people who develop symptoms in their 70s and 80s.

Silver alert requires someone to contact local, county and then state authorities, so i called the local police. They put me in touch with the county Sheriff and the search began.

The sheriff and city PD kept me informed of license reader hits for another couple hours. Seems she was driving up and down one road, about a block south of the shop, just back and forth. Finally, they got a hit on her driving toward home. They caught up with her and escorted her home, but she'd been lost for nearly 5 hours.

When she pulled up, she said she was "Fine", but I wasn't. I stayed calm while the search was on, but after she made it home, my heart sank. Though I put up a strong front, the implications hit me pretty hard. We talked about adding some "rules" to her driving after, but not with much of the gravity of it. Or the fear.

That must've been the longest 5 hours of your life. You are fortunate to have gotten a warning from which everyone emerged unscathed.

I had a conversation with our PCP, who says she shouldn't drive any more. This isn't really possible. We live in a rural area, 12 miles from the nearest store of any kind, 17 miles to a real grocery store. I'm still working , 40 miles away, during the day with one of the vehicles.

I can appreciate that your wife not driving is a tremendous challenge and inconvenience, but she needs to never drive again. It is on you to make sure she doesn't. The next time she might kill someone or not be found alive.

Given that she has a diagnosis of cognitive impairment/dementia, has a Silver Alert incident on record and would be driving AMA, it is very possible your insurance would not cover her in an accident. Dad's car insurance was void as soon as he was diagnosed. You could be sued for everything you have. You might even face liability for allowing her to drive. Another piece to this, is that if you were sued, the process takes time during which your wife will continue to progress in her dementia meaning the woman called to give a deposition or testify in court will not be who she is today.

I plan to speak with a different neurologist because I don't trust the one who made the diagnosis. His staff helps her with the answers to the cognitive test she takes each visit, and he seems to think she's doing fine. I see her slide back every day.

A second opinion is not a bad idea if you aren't comfortable with the current neurologist. Perhaps a university medical center's memory clinic would be a good option.

Some of the quick screening instruments— MoCA and MMSE— have a built-in opportunity to provide the subject a "prompt" when an answer is missed. This is meant to differentiate between being able to recall information and not being able to retain it at all. All that said, you have a better idea of how your DW is doing given that you live with her. The tests can be useful, to some degree, for documenting decline but I don't put much faith in them. I saw my dad take MoCA about 6 months before he died. He scored in the range of MCI but was already in stage 6 by my estimation— fighting hygiene, incontinent at times, delusional, sundowning and confabulating. The psychiatrist remarked at how well he did and dad bragged about his "off the charts" score all the way down to the lobby where I turned in my valet ticket to get the car. When I turned around, dad was getting into a random car being driven by a very shocked little old lady. Off the charts indeed.

I know that some hard choices are to be made going forward,

The choices have been made for you.

but I'm not really equipped to address them at the moment.

I feel you on this. But the reality is that you need to act now to protect your wife. You aren't doing this to your wife— dementia is.

So, here we are. Any thoughts , suggestions or just positive messages would be great.

It's impossible to wrap up the painful and difficult steps you need to take in a positive manner. Safety, not happiness, becomes job one in dementia. It helped me somewhat to reframe the kind of steps you need to take as something you do for your wife, not to her.

HB

Jean loves wildlife

My heart goes out to you. I can't get your story out of my mind, as I am going through something similar. Please know that many people on this forum are wishing you well and you came to the right place for help and insight. This is such a hard time for you. Many good suggestions by others above. My DH is about where your DW is re driving, but we don't live in quite such a challenging (rural) area, and I am retired and can be at home with him. I basically demanded that the neurologist make a recommendation about driving so that I wouldn't have to be the bad guy. He ordered a 2-hr specialized test of driving skills ("physical, visual and mental") which is in about a week. It will be a difficult process . . .

Stan2

You say that you know some choices need to be made but you are not prepared to deal with them now. The disease is not going to wait for you to prepare for it's advance, and no one can tell you quickly or slowly the advances will come. I learn, almost daily , some bit of knowledge or skill that my DW has lost. Most people who meet my DW and some who know her fairly well are unaware she has a problem but I learned just this week that she is unable to read written directions to me while I am driving. She actually lost her place on the very first sentence. I doubt any of us are truly prepared for what is coming but we need to prepare as best we can and as soon as we can so as to insure the safety of our LO's and the people around them.

Lkrielow99

I know this is difficult, I’ve been there too. My DH was flying an airplane and driving when we got our diagnosis. 15 months later he is now in Memory Care. He doesn’t believe anything is wrong with him, his short term memory loss keeps him from realizing all the mistakes he has made. The Neurologist said no flying and no driving, well that went down like a lead balloon. He screamed at the doctor until the doctor walked out. He had an MRI and it confirmed the diagnosis.
This has been the worst 15 months of my life. I never let him fly again, but driving took a lot. I had enough one day and got strong. I disabled his truck. I had too, but it took time and planning. I live in a small town with no services here. His family and children do not help. I bumped up insurance limits and after a few accidents, he was on a high risk policy. He even ran over our neighbors dog. He cursed and screamed because I wouldn’t help him get his truck running. This disease is horrible and the hardest part is the caregivers roll to keep him safe. I felt I was living two lives and was always exhausted. I know how challenging this is. I could not leave him alone and was trapped with him. I found a couple sitters that live pretty far away and would stay with him for short periods. This sucks… read other post about driving. Take a deep breath and make a plan. Much love to you.

Quilting brings calm

I understand that you don’t want your life or hers to change. Unfortunately as others have said, the choice has been made for you. She got lost going to a known place, passing it over and over again. She cannot be allowed to drive.

Does this make for a difficult future living where you are and with you working so far away? Unfortunately yes. As other have and will tell you, living in a rural location with someone who will eventually not be able to stay home alone is not easy. It’s very hard to get paid caregivers in these locations.

Ask yourself this- what will happen if your spouse decides to take a walk in that rural area in the winter and gets lost - while you are at work?

Some people have moved to locations closer to their work or to family. That might allow for caregivers while you are at work. Some people have tried to work from home. Some people have retired. Some people have placed their spouse in AL/MC when their options above were no longer possible.

We do welcome you here- and we do want to support you. However, we are very honest here about what needs to be done for her safety and yours.

sherryandwilliam

https://alzconnected.org/discussion/70774/new-here-dw-is-having-issues

Don't let her drive anymore too dangerous. My husband hit a pole and totaled the car that was before he was officially diagnosed. We had noticed a slight decline. Luckily only the car was hurt and no other person was involved. We got lucky, but we knew then no more driving for him

AzAstro

Thanks everyone for the candid responses. I've seen this disease take its course in others close to me, so I'm familiar with the pratfalls, but it's something that always happens to "someone else". Until it happens to you.

I have to say, I didn't expect as many "tough love" responses, but it just reminds me of my DW. She was ALWAYS one to tell you what she thought, what you needed to hear, and the truth whether you wanted to hear it or not. It seemed harsh at first, but every one of you nailed it. Ready or not, it is upon me to keep her safe.

I've arranged to work from home. My employer was swift in approving it and I start this part of the adventure Monday, 10/14. It'll be a huge change for me and her. But I'll gain 2 hours per day to be with her without the commute, so it's all good.

Several scenarios from above dealing with memory have already happened to us, but no car crashes or injuries as of yet. We've been planning her Dr visits so I could attend for a couple years already, so that's not an issue. It was just a shock when she was missing for so many hours and the comedy of errors that enabled it.

Thank you all again for taking the time to respond. It means a lot.

M1

Keep us posted how it goes. This is a very supportive community and we get vested in each others' welfare. Tough love and all...

cdgbdr

How fortunate that you can work from home! My husband has exhibited the same kinds of issues but stopped to speak with the police when lost and they called me.

I have a companion with him several hours a day while I work and have cameras as well. This has all occurred in the last 6 weeks or so. He's had issues for years but quite a progression recently.

I got all the legal stuff done and have had the full geriatric and neuropsych assessment completed.

Bless you as you go through this with her.

HollyBerry

Huge hugs. I have a similar but worse story, and I'll spare you. You will never forget what it felt like to have absolutely no idea where she was and how you were going to find her; that fear is what sat with me when I wanted to give in and let her try something like driving "one more time."

Working from home is wonderful and not wonderful. To whatever extent you can, create a routine NOW and "train" her to leave you alone! My closed door was supposed to indicate that I was in a zoom meeting with the camera on, and she should wait to interrupt me. Then I hung a sign on the doorknob (in addition to the closed door) that says "in a meeting, come back later," and she still throws open the door to tell me the dog is hungry. It's great to have understanding coworkers.

CarolinaWren

I'm so sorry that happened. My husband no longer has access to any vehicle keys. He went missing for 30 hours twice, and he was also just driving up and down mostly the same road. He was so close to home but just couldn't get here. That wait to find him was horrifying.

I am glad you can work from home. I wouldn't be approved because they would consider it being home to take care of someone else.

JeriLynn66

Thinking of you today as you begin your new working arrangement. Best wishes.

CampCarol

My husband was not gone for hours, nowhere near that, but there is NOTHING more frightening then getting a call from the police a few towns over asking if I was a relative of DH. He had gone to the market, parked the car and was just wandering around the parking lot. No clue who he was, where he was, where he lived, anything. He was never the same again and gas not driven since. I was working from home at the time and was able to do so for about another 6 months. Definitely make a routine as @HollyBerry suggests, but also make a plan “B” or “C” so you’re covered should that not work out. Good luck!