Asking for a friend (should she stop driving?)

FriendinCalifornia

(first post, here) Hello everyone,

The partner of my good friend was diagnosed with EOAD about a year ago. She, the PWD, is in her mid-fifties and seems to be solidly in Stage 4, maybe dipping into Stage 5. My friend is in his late fifties.

Ideally, he should be the one composing this post and seeking advice, but he seems to be too busy lunging from one crisis to another to step back and reach out to others who are in a similar position. So I decided to step in and ask some questions on his behalf. If some of you are kind enough to reply, I'll pass the responses onto him and it might just be the kick in the pants he needs.  He's still working full-time (at a demanding job, no less), and while he has been good about taking care of legal/financials, and getting her to appointments, and preparing nutritious meals with her condition in mind, he has not addressed other things that I think could be dangerous at this point, and frankly, I'm getting a little scared. Also, I live in another state or I would be doing more to help, because it's my opinion that he needs a lot more help.

So here are my questions:

1) Should he insist that she stop driving? Currently she drives herself to an exercise class and a support group. She has gotten lost on familiar routs recently. For some reason, her doctors have not made this an issue. Maybe because she is so young.

2) Should she continue to stay home unsupervised during the day while he works? Sometimes a neighbor will drop in to check on her, but there's no formal arrangement. She no longer cooks or uses the stove, but I fear that she could cause an accident with some household appliance. She is flummoxed by her smartphone. I'm not sure if she could be counted on to call 911.

I've been following this forum for a while, and I have great respect for what all of you spouses/partners are going through, and for how much you are helping each other. It is my sincere hope that my friend will see the benefit of joining such a knowledgeable and supportive community!

1962ART

Hello and welcome to this discussion board.  

Please understand that this is just my interpretation of your situation as a friend of someone with EOAD.  

First, you are concerned and somewhat frustrated by your good friend's partner.  You list the positives of the partner's decisions first, which is great.  But, you are very concerned with your friend's driving and her being alone during the day.  You want to give the partner a good, factual metaphoric kick in the butt.  You say he should be on this forum, not you, because he is just not understanding the next steps he needs to be doing.  You can't do anything because you live in another state. 

Your concerns are very real.  I cannot say why the doctor has not suggested she stop driving.  Could he possibly suggested it, but the partner cannot take that step?  Are there senior services that would give her transportation to her appointments?  As far as her daytimes go, are there adult care centers in her area?  Is there someone who can be hired to be with her during the day?  Maybe you could help by researching the opportunities available to her and passing them on to her partner.

My husband and I give a member of our exercise class a ride home.  She was able to ask us to do this, and we were glad to make her acquaintance.  Your good friend may need your help to attend the class and support group with her to scout out the opportunities for a ride.

I think your friend's partner is doing a great job.  He must be overwhelmed.  He needs to join a support group for partners in his area, and connect with adult services.  (In our state, this is organized by the county government.)

Stay connected with us.  Let us know how it goes.  You are a very caring friend.

M1

Hi friend, you are right to be concerned and hope you can help. Yes, she should stop driving. Asap. It's not easy, but hugely important, they could get sued for everything they have , not to even mention hurting or killing someone. A formal driving assessment may help take the monkey of the family's back, but my partner (similar stage) agrees and then refuses. I'm hiding the keys and locking the gate, which she's forgotten how to open.

But needing a companion to drive her around might be a great way to get a caregiver in the home. That day is coming, and if she can't use a cell phone, it may be closer than he wants to admit. It is typical for those of us close to a pwd to want to minimize their issues and think it's not as bad as it really is. Very hard to stay objective.

You are being a good friend. Good luck.

CStrope

I agree, there are so many things to think about, and I think it's awesome that you're stepping up and doing what you can to help.  The friends that continue to check in on me and offer advice or just and ear, are very precious and important to me.

Is it possible that your friend has more information than he's letting on?  Regardless, here are my 2 cents.

• communication with the doctor is key.  Often times it is necessary to do that by email or through the EPIC/medical record web site so that frank conversations can be had without upsetting the PWD
• Driving is like so many other things, its a difficult thing to take away.  It's easier if you can find a way to just slowly remove the ability!  In my case, that meant buying a new car that my DH doesn't know how to start (new push button start)
• There are ways to keep an eye on a LO without making them feel "watched".  Small nanny cams in the house, tracker on the phone, random friends and neighbors dropping in to say hello.

Cynbar

Please tell your friend that there are serious liability concerns if his partner continues to drive. If she has any kind of accident --- even if not her fault --- there is the potential for lawsuits that could wipe them out financially. Plus, insurance may refuse to pay. If there is any kind of a trail, such as doctor's diagnosis of cognitive impairment or her attendance at an Alzheimers support group, the lawyers will be all over it. I believe there was also a recent post by a person who is going on trial for letting an impaired PWD drive and cause an accident, so that is a possibility too. That will likely get his attention.

As far as her being home alone, that doesn't sound like the best idea but can be hard to get around. He may want to consider a nanny cam or two in the house which would pair with his phone. He can keep an eye on things at home, and can talk to her if he gets one with a two way talk system. I have one by Ring that I got from Amazon, very easy to set up and use. That way he can call for help if something isn't right.

JoseyWales

Becoming part of a support group is hard. I still struggle with it, and push myself to be involved. 

I still work at a demanding job (teaching special education - if you don't think that's demanding you've never spent the day with 5-9 year olds!!!)  Financially, I don't have a choice, since we're in our 50s.  DH was alone until later in stage 5, with people checking on him. It was a slow process bringing in full-time help. It's not like hiring a babysitter. 

Be available to listen to your friend. But unless you're living in their home and see what happens day in and day out, you really don't understand the situation. Not trying to be nasty, just trying to give you some perspective.  

ButterflyWings

What a great friend you are! If he is willing, guide him to this forum. My DH neuropsych directed me here on diagnosis and it was the best move ever. He can read posts anonymously and get as much information as he needs to realize that if she it stage 4-5, this can be the most dangerous time. 

Usually the first advice shared here is, "get your (their) affairs in order". That is, see a certified elder lawyer and secure DPOA for finances/property and healthcare. Driving needs to stop like yesterday, I agree. And financials are a huge issue area for the PWD to (mis)manage, often with terrible consequences.

Some questions that jumped our at me: you said he was all set on the legal/financial side. I'm wondering what that means, since you described their relationship as "partners". Are they married? Common-law? Are there legal documents spelling out what the plans and agreements are? Her will? His?  (Not that she can necessarily agree much longer or it may already be too late for that depending on her level of cognitive decline, evaluated by a certified elder law attorney, with medical input possibly).  

I ask because there is a need to look out for our PWD LOs best interest and if his time is taken up by a demanding career to help ensure their support (kudos to him, that is important!), maybe he needs additional eyes or another trusted care partner to at least help monitor her progression and also ensure the financial planning is specifically geared to get your dear friend through the tough EOAD journey with all the companion care, medical care and physical support for ADLs, etc. that she may need, while also ensuring her financial security should something happen to him first. It could. 

ElaineD

Here is a link to the National Institute of Health (NIH) on Dementia and Driving:

https://www.nia.nih.gov/health/driving-safety-and-alzheimers-disease

Exerpt:

Safety First

People with moderate to severe Alzheimer’s disease should never get behind the wheel. People with very mild Alzheimer’s may be able to drive safely in certain conditions.

Regards, Elaine

Tdrinker46

I reported my mother to the State of California (I lived in NM at the time).  They sent her letter and appeal form.  It takes guts to do this but Mom was a danger on the road.

FriendinCalifornia

Oh my gosh, thank you everyone, for all the very helpful info and advice! I'll be talking to my friend in the next day or two, and will pass it on to him if he's receptive. I think he will be.

Thank you all, especially, for the very concrete recommendations on safety and driving. And you're right, CStrope, it is possible that he has more information than he's letting on, just as JoseyWales is right that I'm not seeing the day-to-day, making it impossible to really understand the situation. That's why it was heartening to hear that there are some things I can do from afar (like researching support groups or just being a good listener). Also, the fact that some of you have experienced the specific challenge of continuing in demanding careers while caring for a PWD will resonate with him.

I'll keep you posted.

Quilting brings calm

It’s possible that the partner of your friend is having a problem with denial.  He may not be truly registering how bad she is actually doing.  Do you know if he is actually in the exam room for her appointments or just providing transport?  Is it possible she’s refused for certain information to be passed to him? He needs to be on her HIPPA form and to have medical power of attorney. If she gives him the patient portal user id  and password, he could read the doctors notes.  Might be informative. 

Has he done some research on his own?  Read books such as ‘the 36 hour day’ or articles such as ‘Understanding the Dementia Experience’  

Now a question for people reading this thread.  The PWD is attending a support group.  Would the facilitator in that group have the right and/or responsibility to have mentioned driving issues to someone that is driving herself to a support group for people with dementia?  Would the facilitator have the right and/or responsibility to discuss that issue with the partner of  the person with dementia?  I am asking because I don’t know anything about support groups for people with dementia