My DH was diagnosed with MCI in 2010 and has continued to slowly but steadily decline, but flatly refuses to follow-up on his condition. He’s decided he will never see the doctor and that way he can never be told he has Alzheimer’s. A month ago he started talking about going in for a physical, having forgotten his pledge. Unfortunately the talk never translated into actually making an appointment. So I suggested that he make an appointment for a physical and ask for an AMYVID Pet scan, now that they are reduced in price. That did not go over well. So I suppose now he has renewed his vow to never visit a doctor – and I am sure by now he’s set it up as a daily reminder on his I-Phone – “DO NOT SEE DOCTOR”.
I wish I could just say, as our PCP does, “Oh well, if it’s Alzheimer’s at some point there will be no doubt.” I could – if not for the fact that he is still driving and probably shouldn’t be. We (my teenage son and I) do all the driving when we are present, and DH does not argue about that. But there are occasions when DH drives, for instance once a month or so he will drive to his company headquarters which is about an hour away, and each Monday night he drives to bowling. I know it does not matter how many times or how far –it only takes one time – and he could kill a child 50 feet from our driveway.
I absolutely cannot figure a solution to this. There is no reasoning with him, so that is not an option. I lay awake at night with my brain running in circles over this, but I get nowhere. Without an Alzheimer’s diagnosis, I have no power of this. And I cannot force him to get a diagnosis.
I’ve decided I am going to develop a sudden interest in his bowling league and go with him to drive there. But, it would seem that this can only be completely resolved over time. Eventually he will lose his job (and from what I can tell that’s probably going to happen sooner rather than later) and then he will never have an occasion to drive.
Am I right? Or am I missing something?
I know there are lots of threads on the driving issue – but I am too sleep-deprived to wade through them all. If anyone has a magic solution, please let me know.
Mary, I don't have a magic solution, but when does his license expire? Could/would the doctor who DX'd MCI contact the appropriate department for your state to request a driving assessment or whatever they are called? Does he have to take any tests to renew his license? Have you contacted your auto insurance company to see what their policy is on persons DX'd with MCI - if they have one? Just ideas running through my mind. I would suspect though, that even if he loses his job - if he wants to drive - he will, unless something else is done to prevent it.
This is a very difficult situation. My suggestion would be for you to go see his dr. and tell him your story and ask for his suggestions (if he has any) on some possible way to get him into the dr.'s office. Maybe the dr. could send him a notice that he needs to come into see him for insurance approval, some shot he might need, or something else. Could it be that he doesn't want to live like he is and so the hell with it all?
Maybe your older children and talk with him when you are not there and tell him how unfair he is being to the entire family and that they love him and want him to get treatment. They could also tell him they don't want him to keep getting worse when there could be medications that would help him and by waiting until he gets worse the medications might not help. And/or you might ask his boss to help with this or his best friend, etc.
Or...as a last resort...tell him you can't live like this and you love him but you are going to have to move out and leave him to fend for himself...that he is not being fair to his family, his co-workers, the company...etc.
Contact the doctor. Perhaps the doctor can go ahead and contact the DMV about his condition and that he needs to be tested for driving. MCI, despite the name, is anything but mild. This way you are not the bad guy, blame the doctor or the DMV.
Contact your insurance company. Tell them your husband's dx and if they care. On hearing MCI they might refuse to insure him. If he was in an accident, even if it was someone else's fault, he could be sued for a lot of money and your insurance company could refuse to pay since they didn't know about his condition. Policies vary by insurance company and state. If they say they will cover your husband get it in writing. It not, take way your husband's keys.
Find out if in your state you can report your husband to the DMV but do it anonymously.
Get his keys when he's asleep, file down one of the notches, that way the key won't work, do it today. You'll end up having to do all his driving, bowling, etc. Start lying about getting it fixed, tell the garage, if it goes that far, to tell him they're waiting for parts, whatever. I don't blame you for putting off the inevitable fights this may start, but it is one more responsibility we have as caregivers for someone with dementia/AD. In many states the doc has the responsibility of telling the DMV about dementia of any type, but it is your responsibility, not the doc, not the insurance company, not the state, it doesn't depend on a test, you already know he is not a responsible driver anymore. It doesn't matter what you tell him, he'll either dismiss what you say or soon forget, he doesn't understand fair, he'll drive without a license. He cannot reason, but you can. I wish it were otherwise, we all do, but it is what it is. Good luck, I know it's not easy.
Mary22033, this is a very dangerous situation for all of you and you could lose everything you have, including your husband. My DH denied anything was wrong with him and since I had no experience with anyone with memory loss/dementia I just thought it was a midlife crisis. One night he drove to see a college basketball playoff...I stayed home. At 4:30 am the next day I received a call from a policeman in a neighboring STATE about 65 miles from home advising me that thay had my husband and I needed to come pick him up because they impounded his car. He had run out of gasoline on a very cold January night in the middle of a remote back road. Thank God a good samaritan stopped and called the police otherwise he would have frozen to death. In retrospect he couldn't find his way home and ran out of gas. Thank God he didn't get into an accident, hurt others or himself or God forbid, kill someone. I didn't take the keys away but I really should have. It took a second incident which was much more serious (gone for 14+ hours and apparently drove about 300 miles trying to find his way home from the grocery store). Police stopped him while he was going through a tollboth the wrong way again over 75 miles away. Told his dr who wrote to the state dmv saying he was no longer competent to drive. I got rid of his car and told him it was my turn to drive him since he had driven me most of our married lives. He never gave me a hard time about not driving and when his license was expiring I got him a state id, not a license. He doesn't know the difference and I didn't want to be responsible if he had a license and was in an accident.
Mary22033--- The above advice is good. You say, "But how do I..."
Here's a suggestion.
You call the Dr.'s Ofice. Give them a short explanation why he needs to be seen. Make the appointment for as soon as you can. Send a note of your questioins and concerns ahead of time., Tell them he is resistant to testing but has been declining. Put it on the calendar. If you DH notices, just tell him the Dr.'s Office needs to update his records (or whatever excuse you decide) No discussion. If he doesn't notice, just remind him of the appointment shortly beforehand, like it's been set up for a while,. Take him to the appointment. Sit in on the appointment or be clear that you must speak to the Dr. while you're there. You cannot rely on your husband to remember what's said, instructions, ---nothing.
You have to take over, however you can manage it---fiblets are wonderful. As soon as possible, you need to get a Durable Power of Attorney, and Medical POA also. Explanation to him is that if hewas injured badly, you need to be able to take care of things. These require his signature, otherwise you'll have problems because Medical people aren't authorized to talk to you, and you can't take care of money matters in his name.
I know this is a lot to digest but these things must be done for both your sakes.
i agree with all of the above. it means you have to take over and drive them everywhere. no fun. and have to do it when/where they want to go. but its the only way to solve the issue if you cant get him to not drive. its only a matter of time he gets lost or worse. we know this for sure. the duty is on the caregiver to make it work and get our spouses under 'control'. just because they are closing a blind eye to the problems we know exist solves nothing and only increases over time. not being cooperative is not a legitimate excuse. we must take measures to ensure others on the road are safe first and primarily.it adds to our own anxiety as well. we must be proactive and take the reins and become their safety, personal care, and health care advocate. they are no longer the person pre AD and do not have the benefit of sound choices anymore. its harsh to say that we must lay down the law but its the only way to get things under control. we well know things will spiral out of control sooner than later. i wish you the best, try the dr first and see what he suggests. divvi
Get the car keys away. My DH did really loose his keys several times in the house and I kept finding them is strange places. Finally found them but did not return them to him, so he no longer had them. He ranted and raved for a few weeks but finally accepted me doing all the driving.
I thought of one more way today how you might handle this big problem you have. Do you know his boss and would you feel free talking to him. His boss must be aware of his decline if his business he does at home has greatly declined as you pointed out in an earlier e-mail. Ask his boss to tell your dh that he wants a dr's report concerning his condition. That he doesn't want your husband declining and if he isn't taking any medication then he will probably decline faster. This may not be something that you can do...but, it is a suggestion.
Another thing...did you say your dh has an appt. with his boss and it is like an hour drive away? Are you going to be driving him?? You might want to insist that you do drive him.
I recently went though this same situation. I could see my husband's driving progressively declining. I was in the postion that I had to get the medical neurologist to take this on and my husband would not accept my opinion. Patients with AD or FTD don't realize that their motor skills, visiual, reflexes, and judgement are impaired and reasoning with them will only cause you more frustration. Contact your doctor IMMEDIATELY because his safetly and others are at risk. Doctors will not contact Motor Vehicle useless their truly believe that there is no questionable doubt that their patients are at risk behind the wheel. Doctors will also side with the benefit of the patient driving if it's questionable because they realize this is a very serious "privelege" to loss. Contact your husband's doctor IMMEDIATELY...fax him your concerns and document for future legal issues. Hiding the keys is not the answer...you must get to the root of the problem and deal head-on and directly with it. Good luck and God Bless you.
I really appreciate your repsonses, and believe me, I do appreciate the importance of this.
I will start with our doctor - see if there is anyway he can trick DH into coming in. I like the idea of saying a physical is required at least once every 2 years (it's been almost 2 years since my husband's been in).
Bettyhere*, I had to laugh when I read to file down one of the notches on the car key. Desperate times do call for desperate measures!!! God, we can be innovative!
If you can get hold of his car keys to file...why wouldn't it be best just to take the keys and hide them instead of filing them down? You might get some residue from the filings in the key slot which could be amother real problem for you. You can always tell him a fiblet that he must have hidden his keys and forgot where he put them or just tell him you have no idea what happened to his keys.
The major thing to keep in mind would be the result to you financially if he had an accident and your insurance refused to pay. This I believe should be first in your considerations of what you do.
Sonny was always misplacing his truck keys,so I just hid them where he would never think of looking,end of driving.I had just gotten a new vehicle and he didn't like driving it,so after that I did all the driving.After several months he agreed I could sell his truck.He never mentioned driving again.
I don't know what your health insurance is, but if your husband is the one who carries insurance on both of you through his employer, once his work gets sloppy, you might want him on disability (with insurance) instead of letting this go and him getting fired. That could cost you every cent in savings to take care of him without insurance. If you have to, you could also apply this tactic to getting him to the doctor. I didn't tell my husband ahead of time. He was always eager to go anywhere, and I just drove him to the doctor. After we got there, I told him it was for his annual physical, and he went in.
Giving up driving is the very hardest battle everyone fights. We have all been through it and they have given you the best advice. Also, I had the doctor tell my husband that he couldn't drive, and in front of me. From that day forward he let me drive him everywhere........except for the one time I left my daughter's car keys in a bowl on the kitchen counter, and he found them and drove three blocks to Krogers to shop (without a penny to his name and without a credit card!) I had a Chaperone phone for him and it buzzed me to let me know he had left the house and where he was. I called him and asked him if he was at Krogers, and he said yes. I said stay right there, I'll come and get you (I was at work - 15 minutes away). I got him, paid for his purchases, ran another errand before heading home and he pointed to the Kroger parking lot and said Debbie, and THAT is when I realized he had taken her car! I thought he had walked!!!! I didn't make the mistake of leaving ANY keys out after that!!!!
You have to put on your big girl pants and realize that even with temper tantrums of teenage boys (which is what he really is now) you have to take control, by love, and fiblets and hiding and with the doctor's help and friends and family to help you. This is a very hard thing you are about to do, and we're here for you!
I was convinced I was losing my pass to Heaven with all the fiblets I told my late husband. Do NOT keep asking him if he wants to do this or that. Trust me, he'll always say NO. IF you haven't, go through Joan's... and order "Speaking Alzheimer's" and read what they say about 'asking if they want to do this or that." Instead, ask, shall we have lunch before the doctor's appointment or after".
It's so hard to get the keys. In our case, we sold his new van, and planned to buy him a new car., ... but... ummmm, we just never got around to it. After a few months, he more or less forgot about it.
Or instead of asking, it is easier all around if you just announce: 'Lunch is ready' or 'We'll have lunch after the doctor visit.' Sometimes they have a difficult time deciding between choices. But yes, sometimes you just never get around to doing something, like buying a new car. putting things off often works. Nancy, I think you are more likely to get into Heaven for keeping things calm for your husband than always being direct and honest--that only leads to chaos when someone has AD.
Last I knew three states require physicians to report dementia diagnosis to the DMV regardless of how high functioning they still are: Oregon, NJ, CA. Even though my husband went to a neurologist in Oregon, since we are Washington residents she did not have to report the diagnosis. If we had been Oregon residents, the DMV would have been notified and he would have had to go through testing. I would think any state you can anonymously report his diagnosis, even MCI.
I visited our doctor and told him dh wasn't safe driving and then took dh in for his appt. The doctor just casually told him that it would be better if someone else drove for him. He never said dh couldn't drive so he just accepted the doctor's advice and we didn't have any problems for awhile. In his late stage he was set on going to work - we had been retired over 15 yrs. He wanted keys so I gave him keys that didn't go to anything we still owned. He did try those out in the middle of the night once when he got up, dressed, ate cereal and was going to drive to work. He never did even ask why the keys didn't work. I was sure thankful they didn't. Getting a doctor's assistance with not driving is best if you can. Also our insurance would not have been good if he had an accident. I had checked with the agent. Hard thing to do but then nothing about this disease was easy.
Your comment regarding Mandatory Reporting in Oregon is not quite correct. I pasted below from Oregon DMV's website Mandatory Reporting FAQ page.
"My patient has just been diagnosed with early Alzheimer’s disease. Am I required to report? The mandatory medical reporting law does not require that a person be reported to DMV solely on the basis of a medical diagnosis, but on how cognitive and functional impairments affect driving ability. Many people with early Alzheimer's disease are still safe drivers. A doctor is only required to report a cognitive impairment that is severe and uncontrollable. However, now may be a good time to begin a dialogue with the patient and/or family members regarding eventual retirement from driving.
Referring the patient to an Occupational Therapist or Driver Rehab Specialist will allow the person to remain driving as long as it is safe to do so. At the point cognitive and/or functional impairments become severe and uncontrollable, and you are acting in the role of the primary care provider, you are required to report the person to DMV."
Flo, I did basically the same as you did. I called Chuck's Dr. prior to his regular Dr. appt. Once his Dr. told Chuck he should stop driving, Chuck willing stopped. Chuck thus far, has been pretty reasonable, so I am fortunate.
well there is the rub friends, when to know 'severe and uncontrollable' is present. sometimes we dont get a second chance. we know they can go from driving ok then getting lost driving the wrong way. sometimes its not a gradual loss of impairment but quite impaired quickly. you can be sure an insurance company would try to lay the blame on the caregivers for not reporting it sooner to the DMV. my opinion only. 'cognitive and functional impairments that affect driving'??. what a quagmire if a dementia diagnosis is on the horizon. exactly when they pass from driving 'ok' from diagnosis to not is the question and if we will have notice in time.
When my DH was first diagnosed, the doctor told him he could still drive but someone had to be with him. He decided if I had to be with him, he might as well let me drive. He knew he was having problems. I told him what a good driver he was and still is but with his memory problems, he may not be able to find his way around and back home. He was sad about not being able to drive himself whenever he wanted but accepted it without getting angry. Occasionally he would start his old truck up, run it for a little bit and then turn it off. I never had to hide the keys or anything. Guess I'm one of the lucky ones.
I think doctors should be required to report to the DMV anyone who has been diagnosed with MCI, after neuropsych testing. I don’t think a dementia diagnosis should be required, because in many cases (as with my DH), they refuse to go back after the MCI is diagnosed.
The state should place these people under mandatory review for driving privileges. They should be required to annually pass the written test and at least a simulated road test.
It should be the law of the land, and not vary from state to state. If a state wants their federal highway dollars they should have to comply. A federal law would remove the burden from the caregiver and the doctor, and put it on the state where it belongs. They are, after all, the ones who issue the licenses.
The problem with that is how would a spouse get them to go just because their is a new law which would require them to go if a person can't get them to do what is best for them and their family without a new law?
It is really unfortunate that the AD person won't go...That is why many of us had to take the driving issue in our own hands and take their keys away, do something to the car so it could not be driven, go to the dr. and explain the situation...etc. This driving issue is probably one of the hardest things to get done in a timely way before something terrible happens...but, there are ways. My dh was mad at me for months and I finally sold his truck since we were both on the title. My next step was going to be to take his license out of his wallet and then call the police and ask if they would stop him for driving without a license...I dont know if that would have worked or not, but I was going to try.
1) How are their mechanics? My wife's control of the car was very good, but she had to stop driving.
2) If stopped by a police officer, would they be able to communicate? This has resulted in people having to stop driving. I know one person who didn't realize he was supposed to stop when the police lights came on behind him, or when the siren went off. He was followed home and didn't obey the police officer's instructions (he couldn't understand them). If his wife wasn't at home at that time he would have been tasseled. The officer had no idea what he was doing but he was making threatening gestures (which were not intended to be threatening, he didn't know how to react). That was it for driving for him.
3) Can they drive without getting lost? Some people are fine if they stay in the same area. But then we hear stories of the person who couldn't find their way home from the store a few blocks away and drive for hundreds of miles.
4) Can they read signs, including ones that we know more by shape than by words?
5) Can they multitask? My wife also had a one car accident because she *had* to adjust the heating and this distracted her enough to almost hit the curb (I intervened). If they can't react to an emergency situation or concentrate in all conditions driving is a bad idea.
6) Do they show poor judgement? My wife would get angry and drive really fast (not angry about driving, but about how her day went). I found out about this from my son a year after she stopped driving.
When it came for my husband to stop driving, I simply got up one morning and called the insurance company and took him off the policy. He was standing by as I made the phone call. It actually went very well. Trying to reason with them is useless.