My 74-year old friend was diagnosed sometime in Jan-Feb 2009 with early stage Alzheimer's. She was then moved into an assisted living facility near her home. She was very unhappy at the facility, saying she wasn't "as bad off" as most of the other residents and "wasn't there yet." After several months, her grown kids agreed to let her move back to her house if she started taking Aricept and Prozac and gave up her car keys. She says she would have agreed to anything to get out of the facility, so she signed a document prepared by a family friend stipulating these and other terms. My friend made and continues to make remarkable progress as a result of the medications she started taking in May-June. Everybody seems to acknowledge this.

Now she wants her car back so she can drive to the grocery store and attend an exercise class. She currently walks the half-mile to the grocery store during the day (all her kids work during the day). Her children do not want her to drive -- I certainly understand their fears -- but they also don't seem to want her driving skills and abilities professionally evaluated (Spaulding Rehab). A family friend told me she was sure my friend couldn't pass the written test anyway (the one given at the DMV) -- and that the family is probably not keen to foot the bill for costly Spaulding Rehab tests. During my research into this matter, one or two counselors wondered aloud if the restrictions imposed on my friend are in the vein of "too much, too soon."

I realize there's a delicate and ever-moving line between helping the person with AD retain as much independence as possible while providing for the safety of that person and others. The question I have today is not whether my friend should or should not drive, but whether she should have her driving abilities re-evaluated? Then the other question can be addressed.

Could you please describe your own experiences with keeping -- or losing -- or being obliged to give up driving. And also, how you handled or are handling that experience. Thank you very much.

Hello Colorado_Friend,, my name is Tom and I want to WELCOME you to this board that is designed for people like you and I! I’m sorry to hear about your friends' problem. The state revoked my driving privliges almost a year ago. My thoughts about the issue are not easy for me to type. After being the head of the family and providing for so many years, it is hard. I also realize that I have good days and bad days also. On a good day nobody can tell that I'm disabled. On the few bad days, I could easily not see or misjudge the distance to a child and hurt them. I'm relieved that a professional ratted me out and they pulled my licence. Relaxing and not driving has its privilages and I also feel that I might have improved with the Aricept and other drugs. It is very important to keep a positive attitude!
My story,
I’m not a professional in this area. I’m a person with AD that serves as a volunteer on the message board. In June of 2008 (age 58) I was diagnosed with Alzheimer’s related dementia. I began visiting this message board in August 2008 and the people have become important to me. I’m sure that you will find a number of supporters here for you.

I will attach a link to a site that will lead you to your local Alzheimer’s Association
Chapter. Those people will be able to assist you with local resources and thoughts to improve your life:
http://www.alz.org/apps/findus.asp

Please call the 24/7 Helpline at
1-800-272-3900 if you have any pressing issues!

Power of Attorney info
http://www.alznyc.org/caregivers/legalplanning.asp

The Alzheimer’s library
http://alzheimers.boomja.com/C...rst-Steps-61311.html

Caregiving
https://www.carerunner.com/welcome
http://www.alzstore.com/

You mighjt find additional support by addessing the Caregivers forum. I hope this information helps you to resolve your issues. Best of luck to you. Please come on back to visit us soon!

Serenity Prayer
God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.

You've asked a lose-lose question. If you keep her from driving when she's fine to drive, that's unfair to her.

If she shouldn't drive, but drives anyway, it's a matter of time till there's an accident. That's unfair to whoever she may hurt.

You say she's been diagnosed by an appropriate medical professional? And, she's already adapted to not having a car? I'd not renew her driving.

I'm an early age, early stage guy. I've almost quit driving, as we've phased in my wife being the driver full-time. It's inconvenient at times, but workable. I'll still go have coffee with a buddy a time or two a week, but it's close by, and I've driven that course for almost 15 years.

If you're still wavering, think about where her deficits are. E.g., does she have significant visual-spatial problems? That would indicate unsafe driving.

Whatever you do, you'll worry. Good luck.

Hello Colorado_Friend,

Welcome to the AD Message Boards. I'm sorry to hear about your friend but I'm glad you've found us.

What does her doctor think? If he thinks she's improved and capable of driving then I think she should be tested. If she passes, to be allowed to drive.

One problem. We all have good days and bad days. Can she still tell them apart? If she can, then she'll know when it's safe to drive.

Please, come back and let us know what happens.

My wife said my driving was screwy for 2 years. I finally went with her to the Doctor. He teamed up with my wife and said "don't drive!" To prove them wrong I took the simulated driving test (not the driving test)and flunked it miserably.

Omygod!

I could not see a thing wrong with my driving. When I then took the Neuro Psychometric Exam, doing so twice 3 years apart, it validated the findings of the driving test. My visual spatial deficits were prominently displayed.

I offer this to the thread: Sometimes right as it may seem to me, that is not always right as it really is. I should have listened to my wife a long time before I did.

Hi, Colorado. I hope you don't mind if I butt in -- my husband is the one with AD, not me.

The very first sign I ever had that there was a problem was with his driving, and that was at least three years prior to his diagnosis. He had been an excellent driver. However, on occasion, he would now come up too quickly on the car in front of him, and have to brake sharply to avoid a collision, or misjudge where cars were from what he saw in the mirror.

A new study confirms that visuospatial skills may decline years prior to clinical diagnosis, or to any detection of memory problems:

http://pubs.ama-assn.org/media/2009a/1012.dtl#3

My husband was an accident waiting to happen.

The big (HUGE) problem with having your friend's ADLO evaluated is that the problems are not consistent -- they come and go. The majority of the time, my husband drove with the flow of traffic without a problem.

If the ADLO is having a good day, she may pass with flying colors ... but not all days are good.

Lisa asked whether the ADLO can still tell her good and bad days apart. Very few AD patients have the self-awareness of the wonderful people on this forum. My husband, to this day, genuinely does not realize there is anything wrong with him, and he is stage 5/6.

And symptoms can come and go very quickly -- it's not just good and bad days, it's good and bad hours, good and bad minutes.

The symptoms of many (most? all?) ADLOs are sensitive to stress -- when under stress, capabilities can disappear in the blink of an eye. While he was still driving, before I realized what was going on, my husband was in three situations where other drivers did something potentially dangerous ... and my husband panicked, where he never would have panicked before, and was not able to respond appropriately. I am very lucky we're both still alive.

Would testing pick up on that?

It is a fine line, true. It is a difficult decision.

But what, exactly, is wrong with walking half a mile to the grocery store? Exercise is very good for her, and will help delay the progression of the disease. She should be walking more, not less. We walk two miles, every day.

Hey all need some advice.
I stopped driving almost two years ago at the request of my wife, just after starting on meds.
I live in the country and town is 6 miles away there is no social contact with people during the day.
I think I weant to start to drive again,having said that I understand the ramifacations of that statement.
You speak of tests that a person can take ,how do I find out where to go for them?I am smart enoughj to realize that if I fail I will not contest it but if I pass I think I deserve the opportunity to drive again.
Your input as always is valued .

My advice is this Sven:

Read the email immediately preceding yours. Do take note of it.

Read mine that preceded that last one. I had no idea of how my perception skills had diminished.

Taking the test and having that confirmed was one very rude awakening.

What kind of a test?

It was at Abbot Northwestern in the Sr Kinny Institute. It consisted of four different driving simulations.

The first was a video of driving with quick emergencies. I did fairly well with this.

The second was at a steering wheel with a driving view simulated in front of me the apparent motion of which was controlled by me. I did fairly with my wife sitting behind me white knuckling the entire time. She said she felt as if she were riding with me.

The third I have forgotten as it was nearly four years ago.

The fourth was my "Come to Jesus" experience! It had me standing before a four foot sq board with little red lights embedded on it. I was charged with selecting each one as it randomly came on and blinked off. I did OK with the center ones, but those on the orbit of my view I just missed.

This blew me away. I tried 4 times and flunked it miserably each time.

This validated my need not to drive

We had suspected things were wrong with my mom for a few years. We were familiar with the signs, her mom, twin sister and probably family members before them had/has AD.

She had to have a complete required physical from the school board. During that physical, one of the doctors noticed something peculiar and set up an appointment with a neuro. It was a question answer memory test. And as I sat there listening, I realized even I couldn't remember some of that stuff, but this was the first real indication that something was going horribly wrong with her mind. This happened in 1995 and she continued driving, but was declining in other areas.

In 1998 I received a frantic call from my dad that he could no longer handle or control my mom and he was losing it himself. I called my brothers and we scheduled a family reunion and at the same time another test with the Alz Assoc. in our area. They did more extensive testing and concluded she did have AD and should have at least full time observation, meds and no longer drive.

I knew my dad would not be able to do this on his own and seein as I was the only one available, being single and no kids, I moved to thier house.

She was pretty content most of the time with us driving her everywhere, but as we all know there are those times when they get a particular frame of mind that they are fine and without using the bad language here, told us she was going to drive.

One evening I was out on the back porch doin laundry and she locked me out of the house. Before I realized it she was out the front door and down the road in her car. I immediately called my older brother two hours away, thinking she might head that way and also her sister forty minutes the other direction. We all were in a panic, but waited to see if she was going to show up, but didn't. Just as we had all decided to call the police and put out a watch on her, she drove back in the driveway.

I told my dad to just stay cool and see what she had to say about this. She walked in the door just as pretty as you please, as if nothing had happened. She said she had driven over to the coast, walked on the beach, had something to eat and came home. Which was impossible, as the coast is an hour and a half away and she hadn't been gone that long. But by the look on her face and her wet pants, she had wet herself, she must have been terrified.

After that it was all fun and games. Having to lie to her. We disabled the car when not in use by us, gave her fake keys that wouldn't work, locked the car in the garage, all the regular tricks you have to do with an AD person. Horrible.

Anyway, come to find out, the doc had not notified the DMV. Next thing we know she gets a notice in the mail that she needs to renew her license and needs to come in for the written part of the test. As with everything, they remember what you want them to forget and forget what you want them to remember.

So really, out of curiosity and to appease her, we took her for the test. She failed it three times, insisting the test had to be wrong, that her answers were right. The poor clerk even tried to help her get the right answers, but she couldn't, insisting the right answers were not on the test. Oh Brother!!

She still insisted on driving, but slowly and surely, she got passed that stage. She would still go sit in the car on the drivers side for long periods of time, trying to put the fake key in. It kept her busy for awhile, but it was just another very sad time.

Sorry this is so long. I guess I needed to tell a story today.

Point being though, as Alan has said and to save you problems like mine down the road, if she's somewhat excepted the idea of not driving, probably best to stay with that way of thinking and not open that can of worms.

This road is a hard and sad one on all who are involved, but we try to make the best of it.

Best wishes for strength and endurance.

Thank you all very much for sharing your experiences with having to limit or give up driving entirely. Your stories, insights and advice are helping me "park" some thoughts and uncertainties. Prior to these, I was relying solely on subject research, brochures and phone conversations with those wonderful AA volunteers.

Yes, Ttom, I will visit the Caregivers board in time, but honestly, I first wanted to hear what your experiences were in the past or are currently. I hope it was okay that I posed my question on your site. Thanks for the websites and words of support. My friend and I will start attending EOAD seminars ("Early Stage Strategy Series") together this Monday in Denver.

Alan In Colorado, your " lose-lose" characterization is spot on, only now it appears to be "lose-lose-lose." That long-time family friend, speaking for herself and my EOAD friend's grown kids, all see me now as rocking the boat over something that was settled last spring -- and interfering in an area that's none of my business and in which I have no standing. The 3rd "lose" may well be my friendship with the family friend and the grown kids, as most recently, there's increasingly angry feedback from that long-time family friend. No, my EO friend has not fully adapted to not being permitted to drive. She would probably drive only short distances (2-3 miles) if she had her car. And yes, she does have cataracts.

Lisa 248, my friend says her doctor declines to say one way or the other whether she should drive. However, the family friend
disagrees almost always with my EO friend's recollection/account of who-said-what and is becoming angrier (even disgusted) with me for being "taken in." Self aware about good days and bad? She never indicates how it's going in those terms. My hunch is she's still in some denial about her declining organizational and retention abilities. For these reasons, plus the family's decision not to open the doors to a new round of unpleasantness, I don't see testing evaluations on her driving skills as ever happening.

Thanks, Mike Donohue, for the "no holds barred" telling of the hard part of your story -- that is, coming to grips with the reality of one's declining driving ability. And to JAB as well, for the very informative tutorial on the ebb and flow of symptoms, which can be sometimes parsed down to good minutes and bad minutes. I wasn't aware that visual-spatial problems could start several years before an EOAD diagnosis.

I wish you well, Sven 64, and empathize with your desire to drive again. And that's quite a story, BECKYP. Thanks, too, for taking the time to put it on the board.

I hope you are okay with my returning to this board again to seek your input. Other issues are bound to come up, and I'd like to support/advocate for my friend without causing trouble.

quote:

I hope you are okay with my returning to this board again to seek your input. Other issues are bound to come up, and I'd like to support/advocate for my friend without causing trouble.

You are more than welcome

Other issues will arise

We are all well honed sages who have opinions about most anything.

Mike Donohue

My Blog: My Alzheimer’s Afterthoughts http://im-mike.blogspot.com/
My Book: FROM AA TO AD, A Wistful Travelogue http://icmike.blogspot.com/

VERY unfortunately, dissension, anomosity, amongst family members and close friends, can be one of the worst side effects of dealing with the disease and the loved one, and often times results in alienation.

It takes a lot of skills to keep communication open, listen to what others say and suggest and make the best decision you think is right for our own situation. Sometimes the results are good and other times not.

Some acquaintances will just disassociate themselves from just being uncomfortable with the situation and decline. Not knowing what to do.

There is a lot of information on these boards that have helped me through some bad times. Continue to read, research and learn what to expect down the road. But most of all please don't give up on your friendship. She needs that right now more than ever.

The family has the right to make the final decisions on care for her, but she also needs concern, love, comfort and companionship away from the immediate family.

Do the best you can.

Colorado, if you're not familiar with the symptom "anosognosia", you might want to read:

http://alzheimers.boomja.com/A...osognosia-32271.html

Your friend is not "in denial" about her declining abilities. She genuinely does not know her abilities are declining. It's a concept that's very difficult to get your head around ... how can my husband possibly think his mind is fine when he can't figure out how to button his shirt, or use the microwave? But he does.

Almost every AD patient has anosognosia to some degree, and most of them have a high degree of it. In fact, doctors used to make a diagnosis of AD based on the person's beliefs about his cognitive function differing from the opinions of family and friends.

That's why I said the people on this forum are more self aware than most. They actually recognize they're having problems. That's unusual.

And when there is a "blank spot" in your friend's memory about what was said or done, she fills it in with something plausible, pulled from another spot in her brain. She isn't lying -- she genuinely thinks that what she's saying is true. This is another symptom, called "confabulation" and is also discussed a little bit in that article. My husband can carry on a conversation about events in his life that anyone listening to would believe ... except I know that not all of it is true. On good days, only bits and pieces are wrong, on bad days, the entire conversation may be untrue.

I don't correct him -- there's no point, and it would only upset and confuse him. But it can cause problems if other people are involved in the conversation and aren't aware that what he said isn't right. And it can be difficult to find ways to make them aware, without saying anything in front of my husband that would bother him.

JAB: Wow, the site on anosognosia and your comments about confabulation are soooo helpful. The word I used (denial) slid unthinkingly into my description. It is obviously a word I accepted without any understanding -- because I'D HEARD IT USED SO OFTEN and so NON-CHALANTLY by the family members of my EOAD friend. It's a word that should be challenged every time someone uses it, especially and above all in conjunction with AA.

I am so glad to stand corrected. And better informed. Thank you.

Dear Colorado_Friend,

Glad we could help. I hope you will continue your friendship with your friend with AD. We ALL need our friends.

Yes, JAB is fabulous on just about anything you want to know about AD. I think she's a genius with all the research she does!

Hang in there!

Colorado Friend--I applaud you in making the effort to educate yourself about Alzheimer's disease and dementia. Many doctors and "counselors" are unfamiliar with any except late stage dementia when the patient is virtually non-communicative. They extrapolate late stage impressions onto the early and mid-stage patients.

People on these message boards are highly educated about AD and other dementias. The best thing you can do is continue to read these boards and the links of the articles that JAB pointed out.

I'd like to encourage you to stay in contact with your friend. I'm sure she appreciates you. Even if our intellectual abilities decline, we still crave friendship.

Iris L.

Colorado, you'll find the word "denial" sprinkled very liberally throughout these forums, too.

We do challenge it, but anosognosia is so hard to understand that, even after hearing about it, many caregivers/family/friends reject the concept. Which is sad, because they keep thinking they can eventually convince their ADLOs of their illness, and get them to "behave" and be more "cooperative" -- which only ends up frustrating everyone involved.

In the past, it was believed that the AD patient had to be "oriented", both with respect to the fact that their abilities were declining and with respect to "reality" -- the world's reality, not the ADLO's. Caregivers were taught to be brutally honest with the ADLO, correcting them any time they said anything "wrong" and reminding them of painful events they no longer remember. This can trigger the onset of serious behavioral problems -- anxiety, agitation, anger, rage.

Then Naomi Feil developed the concept of "validation therapy." It was strongly resisted by healthcare professionals for many, many years. But, gradually, more and more people became persuaded that she was onto something really good, and now the best (in my opinion) healthcare professionals embrace and espouse her principles. And as a result, far fewer ADLOs develop severe behavioral problems.

(Some ADLOs still do, of course, even when validation techniques are used, because of the type and location and severity of the damage that is being done to the brain. And some of the dementias you'll read about on these forums -- such as frontotemporal dementia (FTD) and Lewy body dementia -- are much more likely to cause that kind of damage than AD.)

Validation therapy is all about finding out what reality is from the ADLO's perspective, and recognizing and honoring that reality as being just as valid as our own. That's why you'll also see the recommendation to never argue with an ADLO sprinkled just as liberally throughout these forums. What's real to our ADLOs is real to them, and arguing won't change that. If their reality isn't hurting anyone, accept it. If it might be harmful, for one reason or another, find a way to help them focus on another, safer, reality that you both can live with.

By the way, this doesn't mean that I don't discuss my reality with my husband when it differs from his. I simply don't insist on my reality, when it's clear that my reality is too difficult or foreign or upsetting for him to grasp. We have some very lively arguments about subjects that don't endanger the way he feels about himself, and I think these are very good for him, the type of "brain exercise" that is known to benefit our ADLOs (and ourselves!)

Anyway, if nobody has recommended Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience", to you yet, that's a must-read for friends and family:

http://alzheimers.boomja.com/A...xperience-59731.html

She doesn't really refer to it as "validation therapy" per se, but that's what her recommendations are all about.

Thank you JAB for the explanation of validation therapy. I never heard it expressed so clearly before.

Why don't other people know this? (rhetorical question)

Iris L.