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Volume 2, Issue 1
January 8, 1999

Forgive me for being late with this issue. As caregivers you know that stuff happens and it has definitely been happening here. It took a year for us to have a late issue and hopefully it'll be another year before there's another.

Another year has come upon us. We like the fact that we have such a strong community of friends who support each other through the roller coaster of caring for our loved ones. Our wish though, is that maybe this will be the year that a cure is found for Alzheimer's Disease. As much as we love and care for each and everyone of you, we'd love to see our group get smaller due to a cure.

We hope each of you will continue to do all you can to make that cure possible. Continue to write to your Congressmen, Senators, and President. Without funding, there is no research to discover that one necessary link that will bring the cure together.

Spread the word, so that our children or grandchildren do not have to endure what we are dealing with.

One of the hardest things we have to do is stop our loved ones from driving. Our articles today will deal with that topic.

Coping with Alzheimer's

When driving becomes an issue

The freedom to slide behind the wheel of a vehicle, turn the key and drive away symbolizes many things: independence, convenience and competence. So its understandable that most of us want to be able to drive as long as possible. Although advancing age may bring a decrease in vision and hearing and a slowing of reflexes, most people learn to compensate for such diminishing abilities. For example, an older person may decide to drive fewer miles, more slowly and not at night. Even though its never an easy choice, most people determine for themselves when its time to limit or stop driving.

When to stop

For a person with Alzheimer's disease, the decision to stop driving is often not voluntary. Just how long someone with Alzheimer's should be permitted to drive (if at all) is an issue that stirs the emotions of those with the disease, their caregivers and the general public. Although some states, such as California, require that people with Alzheimer's disease be reported by their physicians to the state health department and the department of motor vehicles, most states don't have such requirements.

Increased risk

The risk of being involved in a traffic accident increases with a drivers age. Even older adult drivers without Alzheimer's disease are more than twice as likely to be involved in fatal traffic accidents as are middle-age drivers. According to a study published in the December 1988 issue of the Annals of Neurology, per mile, people with Alzheimer's disease are 19 times more likely to have an accident than an older adult without the disease. Despite this increased risk, people with Alzheimer's on average drive 2.5 years after their diagnosis - even though they may have significant cognitive impairment and have been advised by a caregiver to stop.

Surveys indicate the general public prefers that physicians help keep unfit drivers off the road. However, health care professionals have conflicting opinions on the subject of when to take away the keys from people with Alzheimer's. Because the disease progresses differently in each person, its nearly impossible to generalize about when people with Alzheimer's lose their ability to safely handle a motor vehicle. What makes it even more imprecise is that some people in the early stages of the disease are still able to pass a driving test.

Psychological tests can help determine whether someone with Alzheimer's has the memory, perception and coordination needed to drive safely. But there are no definitive, quantifiable, standardized tests to pinpoint when driving should be discouraged or stopped. As a result, caregivers remain responsible for continually reassessing the driving abilities of a person with Alzheimer's. As the person becomes more impaired, the caregiver must balance loss of independence and dignity against the risk to self and others in making the decision.

When safety becomes an issue

Knowledge of the rules of the road, good judgment and adequate eyesight, hearing and coordination are all needed for safe driving. Some experts say that over the years, the ability to drive is so ingrained that it becomes somewhat "automatic." Driving skills seem to be well-preserved into old age in most people.

Most experts agree that even if a person has good coordination and reasonably sharp senses, when judgment is compromised, driving becomes unsafe. "Most people with Alzheimer's disease think they're safe and skillful drivers," says Dr. Jonathan M. Evans, a specialist in internal medicine and geriatrics at Mayo Clinic, Rochester, Minn. "What's interesting is that people with the disease forget that they can't remember how to make good judgments," Dr. Evans says. "They lack the insight to voluntarily stop driving."

Warning signs of unsafe driving

If you're the caregiver of someone with Alzheimer's, its up to you to assess that persons ability to drive. When any one of these signs is apparent, its time for the person to give up driving:

Inability to locate familiar places
Failure to observe and obey traffic signs and speed limits
Poor or slow decision-making in traffic
Anger, confusion or frustration while driving

"My concern is that real-life driving situations, even in familiar areas, are not predictable," says Dr. Evans. "People with Alzheimer's disease are unlikely to be able to judge or respond quickly. That means they may have difficulty reacting properly to a situation like a child crossing in front of them or a car stalled in traffic, even when it happens on a familiar stretch of road."

Dr. Evans adds that there may be no warning signs of deteriorating driving skills. He says the unpredictable course of the disease, with an inevitable decline in cognitive skills and judgment, are reason enough to advise all people with a diagnosis of Alzheimer's disease not to drive.

"My opinion is that you can either drive a day longer than you should and risk a tragedy, or you can stop a day early and avoid serious injury or death," Dr. Evans says. "As a physician, it's my responsibility to bring up this issue with the patient and family. This relieves the caregiver of that pressure."

One thing is certain. Eventually the physical limitations of the disease stop everyone with it from driving.

Putting the Brakes on Driving:

Individuals with Dementia Shouldn't Drive, But How Can You Stop Them?

Driving is a complex activity which necessitates quick reactions, clear sensory abilities, and split-second decisions. For the person with Alzheimer's disease, driving becomes a safety issue. While he or she may not recognize that changes in cognitive and sensory skills impair driving abilities, you and other family members will need to be firm in your efforts to prevent the person from driving.

Because driving is a learned skill, a confused person can still appear to be driving well when he/she is not really a safe driver. Driving requires a highly complex interaction of eyes, brain and muscle and the ability to solve complicated problems quickly. A person who is still apparently driving safely may have lost the ability to respond appropriately to an unexpected problem on the road. He/she may be relying entirely on the habits of driving and may not be able to change quickly from a habitual response to a new response when the situation demands it.

Considering the person's feeling of loss of independence can aid families in their actions to help the person understand why he/she can no longer drive safely. Assisting the person with dementia to make the decision to stop driving can be useful in helping to maintain a positive sense of self-esteem.

Study results

To better understand the effects of Alzheimer's on driving, research is focusing on people with Alzheimer's disease. Results from studies conducted at Johns Hopkins University and at the National Institute on Aging (NIA) support the belief that people should not be allowed to drive after a diagnosis of Alzheimer's disease.

In the Hopkins study, more than 40% of patients studied had been in an accident after a diagnosis of the disease. In addition, 11% had caused accidents; 44% had gotten lost routinely; and 75% continually drove below the speed limit.

In California, preliminary road and laboratory studies (at Sepulveda VA and UCLA) indicate that even persons with early Alzheimer's have markedly eroded driving skills.

In another study of Alzheimer's patients still driving, common mistakes included:

Incomplete stop at stop sign
Not utilizing turn signals
Failure to check blind spots
Not looking side-to-side (scanning)
Not keeping the car in proper lane
Driving too fast for existing conditions
Making wide right turns
Improperly using the gas and brake pedals

Action Steps

As a caregiver of a person with AD, you are in a difficult position. You need to balance two important considerations: keeping the AD person as independent as possible, and the need to protect everyone's safety.

It is important that you take time to evaluate the person's driving ability and be aware of methods you can use to discourage the person from driving.

Assess the person's ability to drive

Look for the following behaviors:

Gets lost while driving in familiar locations
Drives at inappropriate speeds
Fails to observe traffic signs and signals
Makes slow or poor decisions in traffic
Becomes angry, frustrated or confused when driving
Has been involved in or caused an accident

One or more of these behaviors may mean it's time for the AD person to limit or stop driving.

Strongly discourage driving if the person with dementia cannot drive safely

If you believe the person can no longer drive safely, you have several options. You may have to try more than one to be successful. First, be sensitive to what a great loss giving up driving represents. If possible, formulate a "driving" plan early on and seek help from family, friends and the AD person's health care providers.

Encourage the person to voluntarily stop driving

You may be more successful in this if you plan ahead and can reassure the person that a ride will be available when they need to go somewhere.

Instead of allowing the person to drive, tell him or her that you can drive or arrange for someone else to drive

If you don't know how to drive, investigate drivers' education courses and defensive driving programs designed for adults. For more information on these courses, contact the American Association of Retired Persons (AARP).

Solicit the support of others

Ask your physician to advise the impaired person not to drive. Involving your physician in a family conference on driving is probably more effective than trying by yourself to persuade him/her not to drive. Ask the physician to write a letter stating that the person with Alzheimer's must not drive. Or ask the physician to write a prescription that says, "No driving." You can then use the letter or prescription to tell your family member what's been decided.

Ask a respected family authority figure or your attorney to reinforce the message about not driving. Also ask your insurance agent to provide documentation that your loved one will no longer be provided with insurance coverage.

Experiment with ways to distract the person from driving

Mention that someone else should drive because you're taking a new route; because driving conditions are dangerous; because he/she is tired and needs to rest. Tell him that he/she deserves a chance to sit back and enjoy the scenery; or that you don't want him/her to drive because you're concerned about their safety.

Control access to the car keys

Designate one person who will do all the driving and give that individual exclusive access to the car keys.

Disable or move the car

If the person with Alzheimer's is insistent about driving, remove the distributor cap or the battery or starter wire. Or ask a mechanic to install a "kill wire" that will prevent the car from starting unless the switch is thrown. Or give the person a set of keys that looks like her old set, but that doesn't work to start the car. Drive the car to another block, a neighbor's driveway, a private garage or lot.

Substitute the person's driver's license with a photo identification card

Take no chances. Don't assume that taking away her driver's license will discourage driving. The person may not remember that she no longer has a license to drive, or even that she needs a license.

Consider selling the car

By selling the car, you may be able to save enough in insurance premiums, gas and oil, and maintenance cost to pay for public transportation, including taxi cab rides.

Be firm and positive about driving

Avoid arguing with the person, or giving long explanations for why he/she cannot drive. Spend your time and energy helping to preserve the person's dignity by focusing on the activities he or she can still do and enjoy.

Consider reporting the driver to authorities

The following comments were made by people with Alzheimer's or other dementia in a group for those in the very early stage in Colorado:

Talk with family and keep communication open.
I only drive to places close or that I know well.
My family told me to stop.
My family worries about me driving, so I don't do it for them.
I began to feel less secure at night first, now I only drive during the day.
I'd love to be driving but I know it's not a good idea.
It made me happy to give my car to my grandson.
It was the most difficult decision I ever made.
At first you think you will never get over it, but after awhile you get over it and it's a bit of a relief.

Lynn M. Rankin, MD, put it this way:
Which Alzheimer's patients are unsafe? Almost all!

Removing Driving Privileges

Some with Alzheimer's will give up driving as their confidence wanes, while others will stop driving at family members' urging. Still others remain in denial and may not even accept the news from a figure of authority. Here are a few suggestions to help ease the transition:

Remove driving privileges gradually.
The physician should put it in writing.
Hide the car keys.
Emphasize the safety of all concerned and be supportive.
Reduce the need for driving.
The acid test for knowing if the person with Alzheimer's is safe to drive: Would you let your grandchild in the car with them driving?

Remember: while this is a difficult, complicated problem involving the self esteem and independence of the impaired person, the safety of your loved one and others is at stake.

This article was taken from several excellent articles prepared by Chapters of the Alzheimer's Association.

How to Help a Loved One Give up the Car Keys

Telling someone that it's time to give up the keys is likely to be difficult. The person may react with anger and sadness. Here are some things you can do to aid in the decision.

Acknowledge the loss and offer reassurance

Talk about the issue of driving and the things it represents in the person's life. Reassure the person that there are alternatives, that transportation will still be available, and that this is a wise decision.

Consider having the impaired person tested

If the person with Alzheimer's has lingering questions about his or her ability to drive, seek assistance in getting the message across. There may be an agency in your state that offers testing of vision, distance, response and judgment skills. Explain your concerns and request the test results.

Know your state regulations

Some states require that people with Alzheimer's disease be reported by their physicians to state health and motor vehicle departments. Some states automatically revoke drivers' licenses of people with Alzheimer's. Even after license revocation, the person may need to be reminded that they no longer have a license.

Ask others for support

Ask a respected family member or friend, physician, attorney or insurance agent, to reinforce messages about not driving. If your loved one insists on continuing to drive, ask his or her physician to write a note explaining that the person must not drive. Review this with your loved one.

Make the car and keys less accessible

If the person with Alzheimer's continues to insist on driving, keep the car - and the keys - out of sight. There are also devices available to disable cars so that even if the person finds the keys, the vehicle can't be started. Sometimes simply putting the car in the garage or in a neighbor's driveway will be enough to keep the person from driving.

Links

All the above articles are at these links:
Alzheimer Support Group Main Page
Coping with Alzheimer's - When driving becomes an issue
Putting the Brakes on Driving

In Passing: Those We Must Remember

From Wrkitout@aol.com

dated 12-27-98

I wanted to let you know that my mother passed away today. It had to be her final good bye, you see today was my wedding anniversary, and I figure she wanted to make sure I didn't forget her. LOL.Maybe I shouldn't be joking at a time like this to tell you the truth I don't know what I should be doing. I was with her this morning before she died, and I told her how much I loved her and had missed her already. I told her it was OK for her to go, I would let her. I told her how grateful I was she was my mom, and how I appreciated all the things she taught me. I said my good-bye, but had I known, I would have said so much more, even though she never opened her eyes, I like to think she heard me, and maybe understood me. I am relieved she is no longer struggling for breathe, that she no longer will hurt. I indeed believe she is in Heaven as a new angel, with my Daddy.

I don't know, what I will do with my time now that I can't visit her. I do feel lost. I have missed mom for a long time now, and even though we knew it was close, it still makes my heart ache. Remember us in your prayers, and pass this on to Jane in chat as well. Thanks for all your support and chat. I will be on at a later date. Take Care.

From Lucinda89@aol.com

From a friend; dated 1-2-99

On January 2, 1999, Lucinda89's mom found her peace. She was with her family. Please include Luc and her family in your prayers.

From Csober@aol.com

dated 1-5-99

HELLO MY FRIENDS,

TONIGHT WAS ONE OF THE SADDEST AND YET ONE OF THE MOST BEAUTIFUL NIGHTS OF MY LIFE...

MY DEAR PRECIOUS GLEN HAS LEFT THIS EARTH OF OURS AND GONE TO WHAT I TRULY BELIEVE TO BE HEAVEN. TO HAVE SEEN THE WAY HE OPENED HIS EYES AND LOOKED UPWARD AND THE MOST GLORIOUS LOOK ON HIS FACE, HEAVEN IS THE SIGHT THAT HE SAW WITH HIS EYES AND HEART. I WILL MISS HIM SO BUT I KNOW THAT THE PLACE THAT HE HAS GONE TO IS MUCH MUCH BETTER AND THAT HE WILL SUFFER NO MORE... HE WAS IN THE LOVING ARMS OF HIS NEPHEW LARRY AND MYSELF WITH MY DAUGHTER IN LAW AND MY BEST FRIEND CHRISTINE TO SEND HIM OFF ON HIS JOURNEY. HAD I WRITTEN A SCRIPT TO END THIS DAY IT COULD NOT HAVE BEEN BETTER...

THANK YOU ONE AND ALL FOR ALL THE HELP AND WORDS OF ENCOURAGEMENT THROUGH THESE TIMES. I HAVE BEEN BLESSED WITH MANY NEW FRIENDS.
MAY I TALK TO YOU SOON, AFTER MY OWN PEACE HAS RETURNED.

LOVE TO ALL CHARLENE

From STSWILLIE@aol.com

From a friend; dated 1-6-99

I am sorry to have to tell you that STSWIllie's Dad has passed away today. Last night in group, AC told us that Sue received a call yesterday afternoon from the nursing home. She was with him when he passed. I don't know anymore details than that. I talked briefly with her this morning and she said she would not be in group Friday but that she would be back next week...she needs our support.

Sue had begun a home page and she has written about her Dad and his struggle with AD and has included pictures. It is a touching tribute. Please keep her and her family in your prayers.

Karen

EMail Box

From Weather91@aol.com

We (PampMom and I) were thinking about making a special area for people to leave get well wishes for AlzJane. When she gets home, it would be something special for her to enjoy.

Get Well Wishes for Jane

Kevin

Editor's note: As most of you know, Alzjane198 had a heart attack Christmas night. She is still in the hospital recovering from Quadruple Bypass Heart Surgery. Her mailbox has been closed since her dear husband, Chuck, does not have the time to keep up with all your mail. Kevin was kind enough to set up this site so we could all send our wishes for Jane and her speedy recovery.

From AZMcDougal@aol.com

Hi. I am sorry I have not been in chat but mother had a heart attack and I have been a bit busy. I do wish you a blessed holiday season and a great new year. Always when I pray I pray for you and your group. God be with you. Your friend... Dee

From Bubbierg@aol.com

All best wishes to you folks and all the sharing caregivers. May I respond to NO900 who wanted to hear from spouse caregivers.

My 72 year old husband was diagnosed with AD 3 years ago, having displayed symptoms for about 18 months. He is in the moderate/severe stage now. We are both in good health otherwise and do not have real financial concerns, which certainly makes things easier.

I believe it is much, much harder for a child or grandchild to be the caregiver than the wife, and perhaps the husband too. After so many years of caring for each other and sharing intimacies, it seems natural to do toilet care, bathing, meal preparation and recreation sharing, doctor visits, and of course sleeping together. Retirement means that we are not torn in different directions while trying to support the needs of a younger family and career.

Watching goofy TV shows together doesn't deny others the pleasure of their preferred shows. Wake-up and bathing schedules aren't stressful because no one else is needing the bathroom or our attention.

Caregiver-wives I know whose loved ones are now in nursing homes have more freedom to be there to make things better and to spend time with the loved one even though they are no longer recognized.

Also, because we are older, without realizing it, we have learned to accept mortality as a natural part of a good universe. Since spouse is in many ways an extension of ourselves, acceptance comes easier to us than it does for our children. Certainly there is less guilt and sentimental anxiety.

Our friends are more supportive than young companions could be and have more free time to spend with us. All our lives, I have been making social arrangements for the two of us, so it isn't peculiar to do so now.

My best advice to any care giver is: Try to push aside feelings of guilt. Not good for patient or you and uses up energy for productive activity. Especially don't feel guilty about accepting offers of help or visits from dear friends. Once they know how to be helpful, they usually like it.

Good luck!

From ESKIMODEE@aol.com

Dear Karen and Jamie: Please ask your readers if there is anyone in New Jersey (around Union County) that is a caregiver.....would you like to meet for coffee sometime????? E-Mail me at ESKIMODEE@aol.com Thanks!

From BRAX228@aol.com

Thank you for your informative issue. I printed the coping with grief suggestions and presented them at our support meeting. How true that we are in the grief process, before the actual event.

To N0900:

I am a caregiver to my 55 year old spouse with Pick's Disease, and I agree that caring for a spouse is quite stressful. Where is the man who was to love and protect me for the rest of our lives? When he was first diagnosed 3 years ago, we attended a joint support meeting. The couples all met together where various aspects of the disease were discussed. Then we separated, and the caregivers were in one room and the patients were in another, where they were encouraged to vent their anger and frustration.

In response to the writer from Michigan who had such a bad experience with Brighton Gardens (I think it was issue #23): Marriot is opening a Brighton Gardens in Omaha, and I have been in discussion with their admission people. When I read that note, I was quite concerned, and contacted them. I forwarded them the letter, and they in turn sent it in to corporate headquarters, so "them that be" know of the situation. As of yesterday, they had no further word, but assured me that corporate knew of the posted letter.

See you all in two weeks!!!!!

Hugs and Peace,

Karen (KMenges581@aol.com)
and
Jamie (DRMOM1955@aol.com)