Early Onset Alzheimer's: Driving and staying home alone

Posted by jodeej @jodeej, Jan 5 2:30pm

Hi,
My husband was recently diagnosed with Early Onset Alzheimer’s. He is still able to drive and be home alone, thankfully. I’m just wondering, how do you know when to take away the keys or transition to having someone with them without having a major event make it happen?
We do have an appointment with a neurologist this week to establish care locally. (He got his diagnosis at Mayo, but it’s a 5-6 hour drive and I wanted someone closer for routine care.) I’m hoping to broach some of these questions with him, too.

Thank you and blessings
JoDee

Hi @jodeej,
Ah, these are really good questions and something many caregivers have had to ask and judge when is it time for someone to no longer drive. When should they not be left alone. I think you'll be interested in these discussions and blog posts:

– Alzheimers: When should someone not be left alone? https://connect.mayoclinic.org/discussion/alzheimers-1/
– What's a Driving Evaluation and Why Should I Take One? https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/whats-a-driving-evaluation-and-why-should-i-take-one/

I'm tagging fellow members @debbraw @janeejane @IndianaScott @suerc @leeandpat @rmftucker and @rafaeln27 as they have all faced these stages and challenges. Jodee, It is great that you can have these discussions with your husband. Is there a better time of day to broach the subject of independence? What signs do you look for to know when it is a good time to talk?

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In our case, I requested that my mom's neurologist send a doctor's request to the DMV to have a behind-the-wheel evaluation. Mom received an official DMV notice in the mail and she asked if I could help her get to the special facility where the test was to take place. Because I felt sure that she should not continue to drive, I told her that she would have to take care of the details herself and that I was unable to help her. She was upset but she attempted to get there herself. She got lost on her way there and missed the appointment. All other appointments were overlooked and her licensed expired. At that point, thankfully, she was fairly compliant about losing her freedom to drive and we didn't have wars about her driving. Because we lived together she didn't seem to mind me driving her if we needed to go somewhere.

I understand that others have a much more difficult time relinquishing their freedom, but in this case, I think it helped may have helped my mom to know that "officials" (in this case, doctors or the DMV) were the ones who helped confront the issue of driving.

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My husband had been driving until he had a Dr's appointment and I mentioned he had had a few spells that we attributed to heat as it was in the summer. He would black out for just a minute or so and then after resting seemed to be okay again. She called me aside and In addition to having him consult a cardiologist, she said he really should't be driving any more. I asked her to tell him that and he never tried to drive again. We were very concerned within the family on how to get him to give up driving, but that did it. He still had his license and would tell everyone that he could still drive, but he never attempted to. By that time he was no longer staying alone. so someone was always with him.

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This is such a tricky subject because driving is so key to feeling independent. We just went through this same issue with my mother-in-law, who lives with us. She has a condition that causes dementia but also has days where she seems fine, so it was hard for her to understand why she can't drive anymore. She is a fiercely independent person and her doctor didn't want to take away her driving privileges despite multiple physical conditions that make her less capable to drive. The mental impairment was kind of the final straw. We relied on the advice of medical providers rather than telling her that we had decided she was not allowed to drive. She was still pretty angry with us because she would forget and we had to remind her. For several months she asked every medical person that she saw if she could start driving again. She seems to have accepted it now and is okay as long as we give her rides when she needs them.

For your husband, his reaction could vary a lot based on personality, temperament and where in the brain the impairment comes from. In my MIL's case, one of her key challenges is lack of impulse control, which made it harder. If your husband is more laid-back or perhaps realizes that he could be a danger to others, he may give it up more willingly.

Good luck to you. This is a challenging issue to navigate. In the end, we made safety our guiding principle and while she didn't like it, she did eventually get used to it.

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Hi JoDee. The subject of driving is a tough one. Everyone figures out different ways to handle it, but it needs to be addressed before something bad happens. I wrote a blog on the subject and called it, "It Was Driving Me Crazy". It might help you. Here is the link: https://anewpathformom.com/it-was-driving-me-crazy/. Good luck and I wish you well! Virginia

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We were referred to a rehabilitation center for a driving evaluation that involved a set of cognitive tests and a driving test. We received a written set of suggestions including: drive only in familiar areas, drive during the day during non-rush hours. My husband gets satisfaction from driving to his exercise classes, the grocery and hardware stores and to our son's house and seems pretty confident and safe.

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@jodeej Hi JoDee, You mentioned Mayo, so that makes me think you may be in Minnesota. We faced this situation with my mother, whose impairment was left-side neglect caused by a stroke. None of my siblings wanted to be the "bad guy" taking the keys, so it was left to me. Know how strong-willed she was, and that leaving the car disabled would not work forever, I had her physician tell her she needed a driving assessment to get her keys back. Than I scheduled it at the Courage Center in Golden Valley. After hours of testing, including a behind-the-wheel session, the assessor very gently explained to her that the damage was so severe that she could never safely drive again. He provided the same in a simply-worded letter that we could show her whenever the issue arose, and in the letter he stressed the matter of her safety and that of people around her.
She was very angry at me, but mainly at the assessor, but we accomplished our goal. In calmer moments she was able to acknowledge that she didn't want to endanger others.
If you are not near the Twin Cities, you can check with your Department of Motor Vehicles, AAA, or his physician for the name of a testing person in your area.
If your husband's impairment is mild at this point, is he willing and able to discuss this very touchy issue with you or the doctor?
Looking into the future, we had a friend a few years back who hired a retired friend of her husband be on-call to give him rides when the mood struck and he wanted to get out without her. The friend was aware of his impairment, but handled it beautifully and it gave Dick a safe way to have a little independence.

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@80now

We were referred to a rehabilitation center for a driving evaluation that involved a set of cognitive tests and a driving test. We received a written set of suggestions including: drive only in familiar areas, drive during the day during non-rush hours. My husband gets satisfaction from driving to his exercise classes, the grocery and hardware stores and to our son's house and seems pretty confident and safe.

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Welcome to Connect, @80now. As both you and @sueinmn state, non-family assessment in both verbal and written forms are really helpful. I'm glad that your husband is still able to drive in familiar areas. Does he have to return for regular driving evaluations now?

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