Are Reminder Notes Enough for the Alzheimer’s Patient to Live Alone?

Are reminder notes enough to let the person with dementia live alone or drive a car

Are reminder notes enough so that if you knew you were going to lose your car keys tomorrow, you could you put them in a “special” place tonight and prevent their loss altogether?

I have a friend, recently diagnosed with Alzheimer’s, who has been telling me about just such a plan she has put into action to save her memory. Every day she writes notes about “forgetting”– so she won’t forget things tomorrow. Post-it notes paper her walls, doors, fridge, calendar and table-top.

Louise, in the early stages of Alzheimer’s, lives alone and is fairing well enough to retain her driving privileges. Her neighborhood shopping center is only a few blocks away so she manages quite well driving that short distance. At least, that’s what she tells me.

Louise plans ahead every evening, and writes notes about all the things she may forget tomorrow. Her own way of postponing the “forgetting” of Alzheimer’s.  It sounds like a good idea to me and I’m thinking–“what could it hurt?”

Actually, Louise had handled Alzheimer’s much better than I thought she would. And I readily agreed to join her for a quick trip to the corner grocer. As we settled into the car, I noticed that she was struggling a little more than usual with the gear shift, but I stayed silent and allowed her to handle it. Some issues had nothing to do with memory, I reminded myself. And I shouldn’t be a pest, always trying to take care of her.

As Louise worked with the stubborn gear shift, I noticed the collection of Post-it notes along the dash of her car. ‘Louise, saving her memory again,’ I smiled. Then I felt compelled to ask about one peculiar “post-it note” taped to the dash. “What’s this, Louise?” I asked and pointed to the words in Bold red letters,”Turn Key.”

Louise had begun to perspire in her struggle with the gear shift, unable to move it into Drive. When she glanced where my finger pointed, she fairly shouted. “Oh my goodness! How could I forget?” She reached across and grabbed my hand. “Thank you, thank you.” Then she turned the key and started the car and the gear shift slid smoothly into Drive.

I was stunned. As Louise would tell me later, many weeks earlier she had tried to drive her car but could not get it to move. After many attempts in a single day, she finally remembered. She needed to turn the key to start the car. To be certain it never happened again, she taped the Post-it note to the dash. TURN KEY to start the car before attempting to drive it.

Louise had a good idea. The post-it notes are helpful– to a point.
They are not helpful for major things such as driving a car, operating machinery or a sewing machine, babysitting young children, using weapons of any kind.

The problem with Louise’s theory is–

  • She forgot the car had to be started by turning the key before it would GO
  • She forgot there was a note telling her how to start the car
  • She thought something was wrong with the gear shift, though there is much more to driving a car than the gear shift
  • What if during her next drive, she forgets what a red-light means, or a stop sign, or yield for children, or school crossing, or railroad crossing
  • What if she knows what a Stop sign means, but doesn’t remember how you stop a car

The “what-if’s” are endless. Where Alzheimer’s is concerned, there is no way to plan ahead, or know what you will forget tomorrow, or an hour from now, or a minute from now. There is no sequence to the forgetting that can be planned for or adjusted to ahead of time. My Mom’s home was covered with post-it notes but she never remembered to read them.

Reminder notes have their place, but they can not be used to drive a car, or operate machinery, or use a weapon, or take medication, or babysit young children, or make doctor’s appointments–  Family members, Other loved ones or Care-givers must take the responsibility for the person with Alzheimer’s or Dementia when it comes to life and death decisions. 

Reminder notes are not enough to make major life decisions.

Here are a few items that may help if you are caring for an elderly loved one!

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The Eldercare Handbook: Difficult Choices, Compassionate SolutionsPersonal Safety Alarm for Women/Joggers/Elderly Security key chains Panic device Protection Product Gadget Saves your Loved One’s LifeInnoGear® Wireless One Remote Two Call Button Caregiver Pager Alarm Massage Therapists Beeper Nurse Call Alert With 2 Modes – One Year WarrantyElders Living Alone: Frailty and the Perception of Choice (Modern Applications of Social Work)Generic Rm B690 Mother’s & Father’s Day Gift Multi-functional Nail Clipper with Magnifier for the Elderly

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Comments

  1. says

    I read all of the comments in addition to your posting to see what your thoughts were before posting. Thankfully, I found we are in sync as I remember similar issues dealing with my Dad and our journey. He wasn’t very good at using the phone and we were concerned, since Mom wanted/needed to keep him home for as long as possible, he’d have to call for help one day. I created a magnetic list of phone numbers and names of each of us along with “911” and put it boldly on the refrigerator right next to the phone stand. I explained to Dad, who everyone was and why their phone numbers were important to him and Mom. I can’t tell you how many times he asked Mom “what’s this?”. She’d explain, “It’s in case we need to call for help and can’t remember who to call. We might need help someday.” Dad couldn’t imagine what kind of help that list could be. The list is gone now as is Dad. We certainly try to do everything we can to postpone the “forgetting” of Alzheimer’s don’t we?.
    I really like what you have created here and hope you’ll consider following me as well at lyndaconverse.wordpress.com
    My book is titled, “His Name Was Merle, Our Journey through Alzheimer’s Disease”.

    • ~ Sandy says

      Hi Lynda and congratulations on your Book! Writing is hard work, but remembering does become a pleasure.

      I’ve noticed the farther I get from Mom’s passing (5 years in a couple months) the less I remember Alzheimer’s and the more I remember my mother. You’re right, many times things happen that were as bad as it got yet laughter would overtake me and Mom.

      I remember those times, often. I’m more than happy to link to your blog and have others enjoy your experiences too.

      Thank you for visiting, Your dad was lucky to have you–

      ~Sandy

    • says

      Sandy, thanks so much for your reply. It’s good to know the memories remain as the devastation of Alzheimer’s wains at least a little. I remember, with great fondness, intimate moments I was privileged to experience with Mom and Dad as I occasionally spent an overnight or two with them to help Mom. Dad often referred to me as “that friend of yours” to Mom. I liked that as we were often times more best friends than mother/daughter throughout this journey.
      Your Mother was obviously very blessed to have you and we are all blessed that you continue to be a voice for so many and a listening ear to even more.
      Sorry to repeat myself but I had intended to get your permission to share your article about the “notes” at my speaking engagements as is appropriate. Would that be OK? I would certainly credit your blog as my source for the article.
      Thanks again and I look forward to staying connected.
      Lynda

    • ~ Sandy says

      By all means, Lynda. You can certainly quote anything you read here. A link back or credit is icing on the cake.

      I certainly understand. My Mom use to call me on the phone and new exactly who I was, but when I went to see her an hour later — she would introduce me as the nice lady who took care of her. My voice didn’t age, but my face did and she no longer recognized me. After awhile…being “the nice lady who take care of her,” was enough.

      Best,
      ~Sandy

  2. says

    If the person has family members who help out, or an employed aide, Memo can help. Caregivers can post messages, update the calendar, add audio alerts, etc., remotely, from home, school, or travel – wherever they have interest access, whenever they want. The updated items are displayed on a ten-inch tablet in the person’s home, usually next to their favorite chair, where they will see it frequently during the day. It always displays the correct day, date, and time. Many of our customers and their families use it several times a day to reduce confusion and frustration of elders with dementia – and to reduce their own frustration and repetitions!

  3. says

    I love this article! As family members (and I’m speaking for both sides of our family), we made excuses, made allowances and just plain avoided the driving issue. My father-in-law recognized 17 of 18 road signs on a driving evaluation after being diagnosed with Alzheimer’s disease. One year later, he recognized 1 of 18. He was still driving in the intervening time. I hope if I am diagnosed, I have enough presence of mind to give the keys away. If I don’t, my family members need to take them from me, for my own safety and for that of everyone else.

    If you don’t want to confront your loved one (and really, who does?), get the eye doctor or medical doctor involved, letting them know that the goal is to take away the keys from an unsafe driver. The eye exam often will solve the issues, given the prevalence of cataracts and macular degeneration in the elderly. Otherwise, the doctor can order a driving evaluation by a physical therapist, which provides objective evidence that the person should not be driving. Also, you can try to get the people at the driver’s license bureau involved. The laws are different in every state, but many states require a re-examination of drivers over a certain age to renew their license. This may disqualify your loved one. If all else fails, disconnect the battery to the car, sell the car, or give it to a younger family member (appealing to the person’s desire to “help the younger generation”). There are too many drivers with various kinds of dementia who stay behind the wheel long after they should have given up driving, often with tragic results.

  4. says

    I spotted the same problem you did. Cute idea but not sufficient for driving a car. A person who isn’t quick enough to remember to turn on the car, shouldn’t be driving the car. The notes are providing a false sense of security.

    There won’t be time to read a note when she is struggling to remember which pedal is the brake. Or even that there is a brake.

    Mind you, I admire her GREATLY. What a wonderful woman. How sad for her to lose some more functions.

    • ~ Sandy says

      That’s exactly what I thought. How often do we hear or read about a car crashing through a store, theater, school yard because they confused the gas for the brake. It’s just too sad.

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