I'm making progress with my brother's diagnosis

elainechem

I found out today that he is scheduled to see a neuropsychologist on two days in August. Yay! This will mean two trips up there that month, but I'm going to do it. I emailed them a copy of the signed HIPAA form so that they can talk freely with me. We're on the way!

elainechem

I texted my brother yesterday and told him when his first appointment is. He responded, "Ok." His PCP sent the referral over in April. I'm fairly certain that they scheduled the appointments and notified him, but this was all news to him. He's much worse off than he thinks he is. At the second appointment, the doctor will go over the results with us. I wonder what might happen if she tells us that he shouldn't be living alone anymore, or that he shouldn't be driving anymore? I'm praying that he will take the news better than my late husband did.

H1235

This is a staging tool used a lot here. It’s very helpful.
https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

If they don’t mention driving I would ask, I would also ask about his ability to live alone. If there is some way to get the questions to the doctor through an online portal that might be even better. I would guess that you even asking the question ps will be upsetting. Sometimes the person with dementia will take the news better from a doctor (my mom did). Even if he still gets upset, at least you will know how things stand and won’t have to wonder.

elainechem

https://alzconnected.org/discussion/comment/213330#Comment_213330

Thank you for this info. I already know much more about dementia than I ever wanted to since my poor husband died of early onset Alzheimer's disease in 2020.

JDancer

Based on your previous posts, it sounds like your brother shouldn't be driving.

If someone forgets what they're doing, how does this translate to driving? Doe he forget where he's going? What to do at a stop light? Who has the right of way? This sounds worrisome.

I understand how difficult this is, but please do what you can to keep him and others on the road safe. I'm sorry you have to deal with this. Dementia sucks.

elainechem

https://alzconnected.org/discussion/comment/213463#Comment_213463

I understand what you're saying, but he lives in another state and isn't even diagnosed yet. After we get the results of his testing in August, I'll know more about what needs to be done. At this point, I think he'll actually listen to the doctor.

By the way, I've seen him drive holding up his cell phone for navigation.

H1235

https://alzconnected.org/discussion/comment/213330#Comment_213330

If you look at the bottom of stage 4 driving is mentioned.

elainechem

https://alzconnected.org/discussion/comment/213520#Comment_213520

I understand your concerns. However, I am not in a position to help him yet. I live 6 hours away. He lives alone and has no family or friends nearby who can drive him places. I have to wait until he undergoes testing before I can start taking steps, depending on what the neuropsychologist says.

It was difficult to get my late hubby to stop driving because he had anosognosia and was uncooperative and argumentative. But the process was made easier by the fact that I was available to drive him wherever he wanted to go. I would really need to convince my brother to move closer to me before I can enforce the no driving rule. It's always hard to take away a man's independence. If you aren't in a position to assist him, it's almost impossible. I'm reluctant to get the law involved at this stage.

concerned_sister

elainechem I'm sorry you're going through this (again) with your brother. Being so distant sure complicates things. With my DB I became the contact with all his doctors, the scheduler of his appointments, and the one to provide transportation. I imagine I would be in distress if I couldn't do those things but saw the need. Good for you helping your brother as best you can as you pursue a diagnosis. Though I've always said, you have the disease long before you have the diagnosis. (I developed this philosophy in part because it makes naming it less scary.) Best of luck to the both of you.

JDancer

https://alzconnected.org/discussion/comment/213526#Comment_213526

Is there public transportation where he lives? Services like Red Cross for rides to medical appointments? Ride share apps? None of it is easy, or inexpensive, but it could save a life or every penny he has if he has an accident driving.

Driving impaired can kill.

elainechem

https://alzconnected.org/discussion/comment/213539#Comment_213539

At this point, I have no proof that he is impaired.

elainechem

Look, I only became aware that he was having this much trouble last November. His wife knew about it for years. Her solution was to divorce him and move to Florida. I stepped up because there isn't anyone else. His step-daughter appealed to me to help, so I am. I'm really doing all that I can do under the circumstances. I am also the legal guardian of my son who has autism.

JDancer

I know you're doing a lot. I know how hard this disease is. Your brother and son are lucky to have you.

I preach about not driving because I, too, lost a family member to an impaired driver. I don't want others to experience that, nor do I want others to feel guilty if they didn't stop a PWD from driving after an accident. I apologize for coming on so strong.

Perhaps other family members could help.

elainechem

There aren't any other family members near enough to help. We have one other brother who lives in Europe. His step-daughter lives in Florida and is pregnant with her second child. I have four children who live in the states, but three of them are working and the one has autism. We're not close to our various cousins. I'm pretty much it. If I wasn't around, he would be totally alone and unable to help himself.