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I Have Alzheimer’s or Another Dementia
To CG's Who Had & Will Have To Take The Keys...
Reposting this here, was a response in another thread...
To CG's Who Had & Will Have To Take The Keys...
I am never really sure what to say...and there is much to say.
One is ((hugs)). Another is, please know that we DO get it...it is a tough situation in which their is little guidance and the one way we have to do it, doesn't make anyone happy. Still another is, please forgive yourselves. You did your best and it is over and past now.
And yet, still another thing is this...please do understand that we are ALL in agreement that no one who has demonstrated that they are unsafe driving should be allowed to drive. Let's please stop arguing this point, we all agree.
The trouble is, many ARE still safe driving...and will be safe driving for some time after dx (now that we are dx'ing earlier). What applied to you, in your situation in later stages, does not apply to everyone or in all situations, or in earlier stages. Please be mindful of that.
The only thing that is true with dementia is that there will come a day when driving must stop. For some it has come. For some it is a long way off. And for some, we are approaching that time.
BEFORE that day comes, what can we do to support people? Because right now, little to no support is offered, thought about, or often discussed. People with young onset are hungry for ideas. Can we please at least start thinking about it, because not everyone being cared for is stage 6+.
AS THAT DAY IS APPROACHING, and like this poster asked, how can we know...what should we look for? I personally think dings on the car is too late...can we come up with earlier signs?
WHEN that day comes, how can we best go about it? I do not believe that it "has to" make people unhappy, I do believe that we can work together and find a better way for everyone involved.
AFTER that day comes...what kinds of things can we substitute so as not to evoke learned helplessness?
Asking questions...working towards better solutions...trying to find ways to bridge this very serious issue...are things that everyone wants. They are not judgments, but rather sympathy...we all get it, we really do...no matter which side of the fence we sit on. Let's start realizing that we are all people here...dx did not suddenly make someone no longer human. We are the same human we were before, but with an added dx.
Please, lets start working together.
I wanted to add many thanks.
I have cared for my mom for the last 10 years, through my own health issues and was recently dx'd with Alz/dementia...and now face some of my own dilemmas to sort through. Unlike many on here, who have caregivers, for all intents and purposes, I am my own caregiver as well...and am facing much of these issues on my own. Not an easy task when you struggle to get your brain to work.
Please know that I didn't stop being human when I was dx'd. Never once did I stop being me...nor did I suddenly sprout the ability to drop all the vital tasks around here that keep our lives going. I have no choice but to struggle through them all. In some ways this is a blessing...but it is always a process, and it happens slowly over time.
The second biggest dilemma I have, is sorting out how to give up driving. Mind you, I am still a very safe driver and have no issues driving. It is just becoming increasingly stressful for me. Being a passenger is not a piece of cake either, and indeed it is even more stressful. But I don't care much for stress in my life.
I do not like the "they will hate it, but take their keys anyways" approach...which you might have to do when someone becomes unsafe. But this approach is not appropriate in my situation either...since I am still safe.
My challenge comes in, and what I cannot really sort out (yet)...is how to make medical transport safe for someone (like me) with dementia?
I have no way to make this writing pretty or palatable...this is the issue/s exactly as it transpires in my mind.
* I only have so much cognitive reserve (yes, I write well on here, rested and at home with almost no sensory input, but out in the world it is a different story)...this presides over everything and must be taken into account. Plus, I will need a fair amount of my cognitive reserve for the doctor's appointment, as they are pretty intensive for me.
* I am prone to getting overwhelmed and disoriented even in places as familiar as my doctor's office. I am also now prone to agitation that in its experience makes me want to get out of places. This must be considered.
* Despite my now having shared the Medical Transport issue with a number of people who work with me, I have yet to have anyone tell me *what* happens to me, IF, I fail at this...as in literally what happens. It scares me, and I need to have a plan for what to do if it doesn't go as planned.
How Medical Transport goes now, is:
- they pick you up early for appointments which is nice, but it leaves you a 30-45 minutes to wait before your appointment;
- you have your appointment (I am usually toast afterwards); and
- then you call them, and within 30-60 minutes they pick you up...and you have to be able to recognize them.
My concern...in the downtime, especially afterwards...beyond overriding the auto-pilot to leave; beyond the emotion and energy coming off people to leave (which is a huge clue and guide when you have dementia, and I rely heavily on it); beyond creating a new pattern, like sitting in a chair and waiting...
...how do I keep from getting confused, overwhelmed...especially if people look at me and smile and say hi...and leaving??? And what happens to me if I leave??
And no, it is not always possible for me to have someone with me at these appointments...there are too many appointments, and not enough worker hours.
Those are the issues that I face as I begin the transition to no longer driving. They are highly scary and stressful to me. When people flippantly think, "well just stop driving," the above is evoked in me.
I say it, but people don't really get it when I say, "I would like to, but..."
And I reasonably suspect that I am not the only person on my own with this dx...or who lack proper supports at home.
Passenger-ing with my daughter is like the worst roller coaster ride ever, and I am exhausted and complete brain mush after...and would result in me never again understanding my doctors.
I try really hard to take all parts of this: i.e. what CG's often express feeling (re taking keys); my CG'ing of my mom; my daughter's actual abilities...and balance that with what I need and with what is reasonable. But often I cannot hold all these concepts together at once, so the process is painfully slow...and my need often surpasses my ability to process it.
Please know, that I am still a safe driver and that I will likely be able to stay a safe driver (albeit with increasing amounts of stress) for about 6 more months...and I am actively trying to make the transition.
I am open to constructive thoughts and ideas...any help greatly appreciated.