Washington
DC
Over the last several weeks, I’ve written about three episodes
of confusion:
- when I was following directions to put a cabinet together with my son,
- when I was finding my seat in the train, and
- when I was figuring out what happened to the laundry.
It’s starting to sink in that these episodes are,
indeed, getting more frequent. I’m
beginning to get some sense now of what it might be like to be confused much of
the time and, even more difficult, not be able to snap out of it on my
own.
I have a baseline level of mild impairment that I’m
used to: I lose things constantly. I
frequently can’t find the right word. I
not only forget to keep appointments but, when reminded, forget I ever made
them. That baseline level of impairment
is slowly increasing certainly but very slowly and only over a period of
months.
The episodes of confusion are completely different:
One minute I’m at baseline, the next minute I’m bewildered by what’s happening
around me; and five minutes later I’ll be just fine again, even curious about
what just happened to me. The episodes always
seem sudden; they come out of the blue with no precipitating events. I’ve never noticed myself sliding gradually into
one. By the time I notice, the confusion
is full-blown. Returning from the deeper
confusion to baseline, however, seems to take a bit longer, perhaps a few minutes.
I’m getting used to these spells and they haven’t bothered
me much so far. But as they get worse, I
wonder if it won’t be much more difficult for my family, friends or caregivers
who will have to relate to me and respond to me without being sure of my level
of confusion. This variability in symptoms
is a hallmark of Alzheimer’s. So if you were
to experience me during one of my episodes, you’d have a tendency to relate to
me the next time as if I’m always so confused. On the other hand, if you experience me only
at my good, baseline times, can you be prepared for my cognitive level suddenly
dropping through the floor? Can you trust
me to handle money or the finances or to take the vacuum cleaner apart to fix
it? The underlying question will be: Do
you treat me and trust me as if I were at my day-to-day level and, if so, how do
you factor in the fact that I may become suddenly more confused? Life together may be a real roller coaster.
In this context, think of the decision about when to
stop driving; it may be the most difficult one in the entire illness,
especially for men. Right now, I’m a
competent driver; people are comfortable riding with me and no one would think
to suggest giving up my driver’s license.
But what if I’m in the middle of traffic going 70 mph on the Interstate
when I have an episode of confusion and I don’t know quite how to handle
it? Should I be evaluating my driving
ability on the basis of my baseline impairment or on the basis of how I am at
my most confused? All logic tells me to
that I should evaluate myself for driving as if I were at my worst.
That’s a scary thought!! But maybe I need to face it without flinching.
Do you experience any confusion with money?
ReplyDeleteNo, I’ve been lucky enough so far not to have had any confusion about money. I do wonder why so few have so much of it while so many so many suffer from the lack of it.
DeleteThe wakeup call for me concerning the driving issue occurred when I overheard a conversation by a son who had convinced his mother to stop driving. He had imagined a scenario where he had to confront the parents of a child who’d been killed in an accident that was his mother’s fault. He imagined the parents saying to him, “Why did you let her continue to drive?” and knew he couldn’t answer that question.
ReplyDeleteI convinced my husband to stop driving until he could take a test. He took a computerized driving simulation test, and scored within 3 points of failing. He accepted his doctor’s advice that it was time to stop.
One of my greatest challenges is knowing when to help, when to insist, and when to step back and let him figure it out. It is a balancing act, like standing up on a roller coaster.
The balancing act can, indeed, be challenging. From my side as the person with the impairment, the challenge is to acknowledge how impossible it is for Marja to get it right every time. Given how my symptoms, too, ride the roller coaster, I can’t expect her to guess my inner state accurately every time. It takes a lot of mutual understanding and forgiveness. (I wrote about my own experience of this on Nov 25, 2012.)
DeletePre-emptive strikes:
ReplyDeleteThere are two parts of "making mistakes"--one, is that the mistake tells us what we have problems with--the state of our brainpower. This is, naturally, frustrating. The second part is to ensure that one doesn't make future mistakes: I call it creating "pre-emptive strikes".
In anticipating "what could go wrong" although it hasn't gone wrong yet, I've found the following helpful:
• Analyse each potential issue before doing it: e.g., before getting on an airplane, putting all required paperwork in one of those passport holders and putting it around my neck, under my clothes.
• When paying by credit card, put the credit card away in its usual place BEFORE stepping away from the counter, even if holds a few people up for less than 30 seconds.
• Only take one credit card with me when I'm 'out and about'.
• Forego "putting things together" and let someone else do it. It may be possible, but why stress oneself out? [We've gotten used to people doing our lawns or winter driveways--just add another few things to the list without frustration or embarrassment.]
• For financial things, reduce the number and type of transactions, e.g., put all items on automatic bank payments to avoid writing checks (checking bank records when they come, of course.) Handwrite the check numbers into the check record, rather than automating them with Excel--it helps to remember if one has done it. [Some computer usage is good--some isn't, depending on what one is doing.]
• So much for the moment! Best wishes, Sodium from Philly
Wonderful! These are the kind of hints, I suspect, that can be really helpful.
DeleteIf you are worried about your driving, take a test from your local motor vehicle dept. Some states have older drivers re-test regularly. Also note that if you have an actual diagnosis of cognitive impairment or organic brain syndrome (which you don't), there are a number of legal aspects you should consider if you have an accident. On the other hand, there are tons of drivers (& train operators etc), who have no such diagnosis and regularly fall asleep, zone out, & otherwise become inattentive.
ReplyDeleteAlso, since you have no medical diagnosis of impairment, perhaps I've missed a post where you have discussed why you persist in thinking you have true impairment vs. "normal" aging changes.
IMHO, you should be concentrating on what you CAN do, not wallowing in the what ifs. What a negative attitude you project. I DO have early AD and I'd be horrified at myself if I concentrated (& publicized) my shortcomings rather than all the things I can do, and do better than a lot of people.
Understanding the differences between normal aging and mild cognitive impairment (MCI) can sometimes be difficult. The Alzheimer’s Association has a helpful webpage (https://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp#signs) and I’ve posted about the differences a couple of times (see, for example, “Normal Aging vs MCI” on Nov 7, 2013). I’ve posted several times about my confusion after the normal test results (see, for instance, “What’s Going On” on Aug 4, 2013 or “Letting Go of Alzheimer’s” on Oct 30).
DeleteIt's equally difficult for women to give up driving. Make no mistake about that. Unfortunately, people associate it with giving up their independence. This does not have to be true.
ReplyDeleteWhen my mother made this decision at 85, I did the annual average cost analysis for the price of parking, insurance, maintenance and gas. For the number of times she drove the car in a week, it cost about the same to hire a driving service specifically designed for seniors. (The driver carried her groceries in for her as part of the service.)
Taxi companies also allow you to prepay (so you won't have to count change and calculate tips if you have MCI). In general, unless you drive great distances and daily, you won't pay all that much more. But taxi drivers won't carry purchases or see you safely into the building.
If you can use a phone and can look at the question from another point of view, you are as independent as you wish to be. And, you don't blemish your driving record (or worse).
In urban areas, public transit can be another option. However, it can also be a nuisance because you have to wait in the dark or bad weather. But for those who go short distances and aren't carrying much, it is also an option that can be quite satisfactory. My uncle's mother did her daily jaunt by city bus to the Legion into her 90s.
A great deal depends on the person. We have become a car culture. But we can also become acculturated to not having a car.
For practical and ecological reasons, Marja and I were able to give up our car almost ten years ago. We’re fortunate: We live in Washington DC and are still healthy enough to live close enough to walk to most of the places we need to get to; for some places further away, we ride our bikes. Washington also has good public transportation which we use frequently. Several friends seem happy to let us use their cars about once a month when it would be difficult otherwise. We haven’t needed the special services for seniors … yet, but I’m under the impression that they’re pretty good here. We’re fortunate that our circumstances allow us to undo at least some of our acculturation around the “necessity” to own a car.
DeleteDo NOT drive at this point! Period.
ReplyDeleteThree good reasons to "jump before you're pushed" into giving up your license:
ReplyDelete1--my dad passed the test with huge effort, but due to prescribed pain killers he was asked to willingly give up his license. He did, and he felt quiet pride in HIS choice.
2--my mom insisted she was fine to drive, until a police officer appeared at her door with numerous complaints about her erratic driving. Marathon session with family; tears and accusations. What an ordeal of unnecessary embarrassment and an all-too-real risk to the driving public.
3--explore transit options while you are able to learn and adapt to them, as well as voice your preferences. Good for alternate drivers to get to know YOU as well! If you wait too long, you might resist the new driver, the bus service, etc. and this places the onus of transportation on your family alone.
David, I love your posts. Keep them coming. They are so helpful just as they are. It's a gift to be able to articulate as you do and a huge blessing to those of us with loved ones with cognitive problems and/or those of us with the same issues ourselves. Thank you so much!
ReplyDeleteNow David! Giving up driving is hard on EVERYBODY EQUALLY, not just men! That was also one of the worst parts about my Mom's early disease was having to give up driving. But out of the clear blue sky, the police called my Dad from two little towns over where my Mom was stopped going down a one way street the wrong way and almost hit the police car! She was trying to get home and was about 40 miles in the other direction! One day she was fine and the next day, she was not fine. Please give it up before someone gets hurt! We got a lady to come in and spend 4 hours a day with Mom just to drive her around to her favorite haunts, clean up a little and make sure she took her meds. This proved very helpful and kept Mom out of the nursing home for about a year. It also kept her happy because she got to continue to run the roads as she always had, shop and visit with my sister at her salon (I live out of town). Thanks again for your blog and your courage to continue to look at this disease from the inside out. Cindy Cox, Monroe, LA
ReplyDelete