A small vicotry

concerned_sister

@harshedbuzz

In another discussion you had posted, "It is not unusual for PWD to recall information that has a strong emotional content. Dad couldn't recall what he'd had for breakfast or the state in which he was living, but he absolutely could remember vividly being told by his neurologist that he could no longer drive until about 2 months before he died. For context, he wasn't sure whether my sister was sick or had died, but driving? That stuck."

I'm feeling pretty good about how something went this morning. The agreement was I'd meet DB at his home, drop off my PC for things we were to do later, go out to breakfast, and then go to this pharmacy to resolve an issue picking up his Aricept. I drop off the PC in his garage. When I was reminding him to close the garage, he seemed to be a little confused, but went in to his vehicle where the remote was and turned the vehicle on as he shut the garage. I pulled up next to his vehicle window and reminded him we agreed to go together with me driving. He firmly said NO. I told him he was changing our agreement. He said No. Then he drove off to the agreed restraunt. I figured to be taken seriously in the future I had to stand my ground. So I just parked in front of his home. After a few minutes he called, I stated he changed our agreement, and he said he was heading to the pharmacy. He then texts me several times in a mischosen group that included the YDB. He insisted he would still drive while still legal. He said he wouldn't break a law or hurt anyone. (Mentioned the DMV test was still pending.) I told him, it's the others on the road. If anything happened they'd sue him for everything he had. [I was committed to not arguing the point, and to not critisizing his driving.] I called YDB and asked him not to reply to the text and not to undermine me. Though he said he wouldn't do that, I reminded him he already did by his actions. (It had been arranged the two brothers would car pool but YDB was letting DB drive some days,) I reminded him of the liability situation and he agreed and didn't deny he had been taking the path of least resistance with DB. It so happened that YDB went to the store with the pharmacy where DB was. When they bumped in to each other in one of the aisles DB groused about me. YDB told him I was not wrong. Told him if his reaction time was off by just a second something bad could happen.

When DB came home, I greeted him. We talked about the meds he picked up. And he told me he was going to ask YDB to drive everyday for the next two weeks. He was hoping the meds would start to help with clarity in that time. He wants to go do the DMV test after the two weeks on meds.

YES! There were no angry words and no disrespect. I told him, gently, that I though he made the wrong decision, but I don't know that I'd make a better one in his shoes. I understand how it must look through his eyes. He said it's hard to give something up you're afraid you won't get back for the rest of your life. I showed him empathy. He looked emotionally drained. We cancelled the plans we had for today, but confirmed various tasks he and his wife were asking for help with on Wednesday. Though there was a tough stretch, all in all it was a good outcome.

Hope5757

Indeed a victory and you showed compassion and resolve. The two aren’t easily melded.

Good for you and I'd give you multiple thumbs up emojis if the site allowed!

concerned_sister

Thank you. And DB just invited me over for dinner tomorrow night (steaks). Definitely no bitter feelings over such a hard subject.

M1

I still get the feeling that you and your family are still unprepared for the amount of resistance you're going to encounter from him and are not willing to take the steps that will likely be necessary. I guess it's a victory, but today he was still on the road, which is extremely scary. You do realize that it's very unrealistic to expect the Aricept to have any effect in two weeks, right? The likelihood is that it won't have any effect at all.

II know you're trying your darndest to bring everyone along, including your DB, but I'm worried that it's going to blow up in your face-or your sister in law's- at some point. Not sure what I would suggest you do differently. I'm sorry it's so difficult. Honestly it sounds like you would be better off holding the POA than his wife.

concerned_sister

Re the aricept, I don't think it would make enough difference for him to pass, but this is how he frames it. If I were dictator he would not be driving, but I'm not. I have not driven with him or even agreed to meet him anywhere he drove himself since the Dr said he had dementia. Thanks for warning me about resistance to come. We'll see what we face after the DMV test. Thanks for your faith in me re POA, but I have to respect my role. I expect some "interesting" discussions with DB and SIL in preparation for meeting with the CELA. And not long after that I'll need to step back for a bit to tend to SO and his surgery. We'll throw in grandson moving out (of my home) before summer starts. Like others I'll be working with the push and pull of various situations.

Iris L.

CS, Why have you not driven with him?

Regarding: "how he frames it", meaning the driving test. Even if he were to pass the driving test on one day, on the very next day he could hit a pedestrian. You all are putting a lot of faith and emphasis on the test center. The test centers were developed for post-stroke patients, who might actually return to good driving capability. A PWD has declining capabilities and declining dexterity by definition.

IMHO, you all are discussing and bargaining too much. Just above are posts about bad feelings and arguing because the PWD kept messing things up in the home, for years. This is the nature of early dementia. Family members hope that the PWD is just having a bad day, and will be better (smarter) the next day. No, the PWD will not get better. The PWD will continue to mess things up. The aim is to maneuver things so that the PWD doesn't get a chance to mess thing up, too much. The PWD is going to try to hold onto his old life as long as possible. It's never going to work. The old life is gone. Forever.

Iris

Iris L.

You mention DB stops speaking in the middle of a sentence. Suppose he stops driving in the middle of the road?

Iris

concerned_sister

Iris,

Your points are valid, but I have to look at it in terms of what tools do I have to accomplish the goal. I think I got full buy in from YDB to no longer let him drive when they car pool.

My sense of the consensus here is DB will not give up driving easily. My understanding is it goes better if this comes from an authority figure to be the bad guy. To me that's DMV. The only support from the neurologist is to agree to send the letter to DMV so that they will contact him.

Why have I not driven with him? So that my words and actions are aligned.

Thank you for pushing this. If I thought I saw a path that was more likely to succeed I'd take it.

harshedbuzz

It sounds like you applied a validation technique speaking to his feelings rather than attempting to reason which is kinder, I think. So glad it defused the situation for you. Saying you're sorry about something doesn't mean accepting guilt— just that you feel badly because something is unfair and painful for someone you love.

The goal is to stop him driving by whatever means it takes. If DYB carpools him to work and DW drives him the rest of the time, you've succeeded for now. I suspect the Aricept won't make a difference but if it allows him to get to the test without driving that's a positive. Baby steps.

That said, I can appreciate Iris's point. You are placing a lot of faith in the DMV to recognize his deficits and revoke his license. My dad didn't drive often before he was diagnosed and never if I was around. I did drive with my mom (no dementia, just vision issues) at least monthly to get a sense of how she was doing and would sometimes tail her. She was a pretty good sport, but careful as I was, I didn't pick up evidence of her poor depth perception even after asking her 2 different eye specialists about driving and was told she'd be fine. She wasn't fine. She caused 2 rear end collisions in a 60-day period totaling 5 vehicles and resulting in a lawsuit which took almost 2 years before it was settled.

FTR, at the suggestion of her eye doctors, she was to limit her driving to local and familiar roads and daylight driving. In both cases, she was on a familiar road (38 years) the main road the runs between our homes which are about 8 miles apart.

HB

concerned_sister

Thanks, HB. Sorry to hear about your mom's experience.

I wish this was as easy as the Star Trek Next Generation command, "Make it so."

I even made your point about accidents on familiar roads when YDB gave me an "it's only a short distance". When, a few weeks ago, he was saying he wasn't concerned if DB drove to his house for the carpooling.

Another tiny milestone yesterday was in the midst of our "standoff", he stated he "needs" his medicine. Knowing him as I do, this is him accepting he is not thinking clearly. It was mentioned above that the family doesn't seem to accept the situation going forward. I've been looking at the ALZ website for info directed at the newly diagnosed. DB is out walking with friends (normal Sunday routine for years). I'll wait til he gets home to send him a link. I've been sending links and PDF's a couple of times a week to other family members. The information is there. I'll be going to DB's house later to go over somethings I think we need for the upcoming CELA appointment. None of this is easy, but I keep trying to make progress where I can.

Again, thank you for pushing the driving issue. It may be back to the drawing board after DMV, but even YDB concedes in his eyes there will be issues with DB passing.

Iris L.

CS, please don't think I am criticizing, I am not. I see your point about not driving with him and I understand your dilemma, being the sister, and also caring for your own LO.

I have another story. For a while I attended a brain injury support group, comprised mostly of post-stroke patients and head trauma patients. They couldn't drive, but they were aware of their deficits. The problem with PWDs is that they are not aware of their deficits, hence they keep fighting to maintain their old lives. You are right, he won't readily give up driving.

Here is another story relating to HB's point about the doctor saying her mom was okay to drive on familiar roads and in daylight. Doctors have no idea about the real world. Here is my proof. As a pediatrician, I often prescribed a medication for an ill child and sent the child home for the parent to care for. I was always confident in my diagnosis and treatment, but I had no idea how the parent would worry. I had an opportunity to be a camp doctor, and prescribed Tylenol for a child's headache, after my examination. I had the child sleep in the dispensary for the night. But then, I was awake half the night, wondering if the child would be okay with my treatment. In the morning, the child was fine. But this experience made me aware that my view of the illness is different from the family's view of the illness. I say all of this to say that the doctor has no idea about what's actually going on in the home of the patient.

Iris

concerned_sister

Iris,

We're good. The insistance that this has to happen strengthens my resolve when dealing with the rest of the family. Wow, I missed prior mention of you being a pediatrician. I made mental note of M1 having a medical background, but I didn't realize it was true of you as well.

Thank you for your insights re doctors vs families. I'm sure what I see as sister is very different from SIL. Re my brother's set of doctors, there's not much offered in the way of "now what?" Hopefully I can send DB a helpful link.

Jeanne C.

I hate to pile on, but I need to comment about the DMV. When I took my husband with severe dementia to get his state ID, even though I was clear about his condition, requested a state ID,and my husband could not even answer questions like eye color without turning to me, they issued him a license. I know this is rude, but many of the dmv employees simply don't care. Your diligence and determination may still be needed.

Iris L.

Doctors have no idea about what it means to have dementia. A PCP told me, "there's nothing you can do about it so why worry about it?" his exact words. Well, there may not be a cure, but there is a lot to be done about it, beginning with ruling out dementia mimics and then planning for the future and enabling safety and general care for PWD and family.

This is why this message board and the website are so important. Most families just wander around, many not even getting a diagnosis, but struggling with the effects of dementia. More has to be done to bring awareness of the totality of the dementias and the effect on families and on our society in general. Glen Campbell and his family made a documentary about his journey (l'll Be Me). Even though they had funds and people who loved him to help, it was a difficult journey. Imagine how much harder it is for people without funds and with no support. Or who don't have the benefits of the members here.

Iris (off my soapbox)

H1235

I found this helpful. Maybe it is something you and your family could use.

IMG_0308.jpeg

concerned_sister

https://alzconnected.org/discussion/comment/204870#Comment_204870

Jeane C.,

You also provided helpful information in a discussion Tyrone started. I almost answered there but started to feel guilty monopolizing his discussion. Here is what I saved that I almost posted there:

Jeane C., Just to say thank you again - I had copied the heart of your post above in to an email to DB and SIL. I was in their home for dinner, and I touched on aspects of the above an encouraged them to read it to prepare for the CELA. And at few different opportunites I told DB, I need to go over this with you ahead of time in case you get tongue tied during the meeting and I need to speak for you. With that framing there were a lot of things I was able to cover with them in our conversation.

Regarding DMV, I appreciate you guys having my back and pushing me forward. I would generalize an aspect of our (siblings) personalities as rule followers. DB spent a good chunk of time in the military. I think DMV failing him is the path that is most likely to be successful. But I have to plant the seeds for plan B. Tonight we went over his medical directives filling in everything but the signature which he will do in front of the notary. We spoke of him authorizing his wife to make certain decisions and what his preferences were. And he ex'ed the box that he is giving her the authority to make certain care decisions for him immediately.

When discussing certain scenarios we discussed the inevitabilty of his disease progressing, and at some point a doctor is going to tell him he can no longer drive. I had his wife acknowledge that she would need to be taking over driving (the scenario was future tense, but I needed to start there to keep DB calm.) She talked of being scared to be driving to some of the local bigger cities. I talked to her, that this is something she needed to do, unless they opt for uber or another solution. DB (yes, PWD) backed this up and agreed she needs to be ready to do this. We talked about his DPOA. He talked about, that she as his wife would already be able to do certain things. I gave him the example of his vehicle, that was in his name only. He would be giving her the authority to sell his vehicle. I gave the example that when he no longer drives, they will need to sell a vehicle and only pay for one insurance policy. He agreed to this. He did somewhat stare off after this, this is not a scenario he wants to think through, but in front of his wife he acknowledged the inevitability of this. She comes from a culture where being deferrential to her husband is drilled in. I think having him acknowledge these things to her will help. (HE may forget or deny this conversation, but she won't.) So we've got the paper work in the works. We'll address DMV in the near future, talk with neurologist by the end of the month. And I guess plan c is to get the PCP (where I'm a patient also) to tell him he can't drive. The PCP has know DB for over 20 years. I think he's my ace in the hole if I need it. I want it all to happen faster, but SIL will have to be the enforcer hiding keys and selling vehicles so these are baby steps in the right direction.

concerned_sister

Thanks, Chug.

I saved that in an email to myself. I'll forward that to SIL and siblings in the near future. I like to space out such things. I appreciate you offering that to me.

For me, today, the have a plan was really valuable. With all the encouragement here to address the driving issue, I knew I'd have to be looking for opportunities for getting buy in from SIL. As I said, ultimately, she's the one who lives with him and will have to be the enforcer.

Jeanne C.

https://alzconnected.org/discussion/comment/204896#Comment_204896

Hang in there. It's great that you are helping your brother and SIL with all of this. It's overwhelming for everyone, but your SIL would have really struggled with both medical and legal jargon when English is not her first language. Strength to you and your family.

concerned_sister

Thank you, Jeane. And thank you for the reminder on perspective. It's been a lot of activity, helping them identify what's ahead, figuring out a todo list, research how to do some of this, actually doing some of this, and constantly trying to move forward, set appointments, stay on schedule. Life's been good to me and I'm retired. As challenging as this all is, it plays to some of my strengths. For SIL to do all this despite cultural and communication issues, plus dealing with the impact of knowing the changes instore for herself and her life partner, I could imagine would be overwhelming. I'm glad I'm in a position to help.

H1235

when we started to question moms driving the pcp referred her to a place that tested people’s ability to drive using a simulator. Since the doctor did a referral I assume it might be associated with the hospital some how. I got the impression they would test response time etc and make a recommendation regarding someone’s ability to drive. Sounded way more involved than the DMV. We never followed through with this since the neurologist just flat out said she shouldn’t drive before the appointment. Maybe there is someplace like this near you.

MN Chickadee

You are really a good advocate and he and his wife are lucky to have you. Sounds like you are moving in the right direction, just wanted to pile on to have back up plans to put a stop to driving. It's not the same as having a higher tolerance for risk with walking alone, cooking etc because he could be endangering others. The DMV may not do anything but that doesn't mean he is safe on the road, it just means he had a good day and managed to pass a test created by people who have no clue about dementia. Early, early on in the disease my mother started getting lost while driving and walking. She was driving our little neighborhood that she had lived in for 50 years and knew like the back of her hand, but she still got lost. Didn't know her way home, left the car in random places and apparently walked until she found home. Could have been very dangerous in the winter or if she ran into a shady person. Twice we had to drive around looking for the car because she didn't know where she left it. A person who lives near her let me know that she was out walking and stopped to talk to mom who didn't know how to get home. It was really alarming because she was otherwise pretty functional at the time. Around this time she put a couple dents in the car (one was a minor fender bender and one was with a lamp post.) We put a stop to driving then without telling her that, just through fibs. Your window of him being cooperative and saying he gets it and will listen to authority may be very short. The anosognosia comes on pretty suddenly at a certain point and then all reasoning is out the window. Big changes like driving and if they do have to move to a different house are best done early if possible, because once they don't have the capacity to understand the "why" of a big change it makes it sooooo much harder on the caregivers.

concerned_sister

Hello Chug and MN chickadee. Thanks for your input. I'm tired this morning and not processing much. I'll re-read and respond later.

In another thread someone recommend "This is us", season 5-6 per a character dealing with first signs of dementia and that person's journey. I had only watched a few season one episodes. I decided to pickup in season 4, episode unhinged. This storyline started not long after that. So I've been binging. Tuesday was spent with DB in the last steps of cleaning a financial mess. Wednesday was spent with SIL in a matter she requested help with. Over lunch break she asked questions about what was to come with DB. That led to pulling out the PC when we got back and going over the Tam Cummings stages. I detailed which of the behaviors I noted and my assessment of stage 4. We went over what was the come and DB's care needs. This and other things we did sets up next week's CELA appointment. This afternoon I'll meet DB and ensure he gets his healthcare directive and DPOA notarized. (He has goal of completing will by end of month.). Keep moving forward.

concerned_sister

OK, deep breaths. I called the neurologist office to make sure the process had begun for DB to be tested. Front desk stated she didn't see that in the files. I was asked if I was concerned. I stated I was concerned about his decision making per him freezing up. She said the process was that they would contact public health who would revoke his license and he would have to prove through testing he deserves to get it back. Do I want to do it? I started to waffle saying I would rather it come from the Dr. We discussed having it come up at the Apr 30 appointment. Then it was as if she was reading from the script in the messages here. You realize if he gets in an accident between now and then they can sue him for everything he owns. Deep breath. Yes, go ahead and ask the dr to report to public health.

M1

Right decision. It will come from them one way or the other. If he gets the letter before the April 30 appointment, he can ask the doctor about it then and you get to sympathize with him for how it's been handled. If he doesn't get the letter, then it can be discussed at the April 30 appointment anyway and he'll be hearing it from them. The trick for you and your SIL and your other brother is going to be NOT to help him set up to be tested. Defer, delay. He probably won't have the wherewithal to set it up himself.

concerned_sister

Thanks.

Phoenix1966

That was a really brave thing you did, @concerned_sister . Keep reminding yourself that you are doing this out of love for your DB. It is the disease that is stealing things from him.

concerned_sister

The neurologist called and confirmed what was about to happen and why. It's the right thing. Phoenix thanks for your supportive words.